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PERSONAL EXPERIENCESGraphic of Climber with Telescope & Computer WITH ATRIAL FIBRILLATION

 

    The purpose of these stories is to provide hope and promote courage in the struggle to be A-Fib free. The individual stories are listed by characteristics or qualities you may be interested in.
 

bulletCured after 30 years in A-Fib
 
bullet Not Necessary To Go To Top-Name A-Fib Centers To Have Excellent Care and Good Results
 
bullet Switching from Metoprolol to nebivolol (brand name Bystolic)
 
bullet LIVING WITH A PACEMAKER/ICD
 
bullet Second Ablation at Provo, Utah by Dr. Chun Hwang 
 
bullet Ablation for Persistent (Chronic) A-Fib at Chapel, Hill by Dr. Paul Mounsey, UNC
 
bullet Ablation for V-Tach (Ventricular Tachycardia) at Mass. General by Dr. Vivek Reddy---Coping with ICD Shock
 
bullet Hopefully a Cryocor Success
 
bullet Two Different "Pill-In-The-Pocket" Approaches---Both Turn to Catheter Ablation for a Cure
 
bullet It Takes Three Ablations---Dealing with the "Paralysis of Analysis" that A-Fib Patients Often Face. Faith and A-Fib. Ablation by Dr. Calkins at Johns Hopkins.
 
bullet What It Feels Like to Have a PVI at the Un. of Pennsylvania
 
bullet Successful PVA(I) but Still on Meds
 
bullet From Nepal to Bordeaux---Treatment of Chronic A-Fib
 
bulletA-Fib Symptom Free Since 2001, Thanks to Dr. Marchlinski
 
bulletAblation at Bordeaux After Failed Mini-Maze Operation
 
bulletAblation at New Delhi, India for $5,200
 
bulletCryo Balloon Catheter Ablation at Mass. General
 
bullet Mowing the Lawn Three Days After an Ablation
 
bullet Cyclist/Triathelete with Persistent A-Fib
 
bulletWife and Husband Both with A-Fib
 
bullet 25 Years in A-Fib
 
bullet The Saltman Microwave Mini-Maze Operation for A-Fib
 
bulletInternational Traveler/Scuba Diver Dizzy and Fainting from A-Fib
 
bullet Cured at the Cleveland Clinic
 
bullet Death from Amiodarone?
 
bullet Marathon Runner
 
bullet Heavy Drinking
 
bullet Epsom Salts Cure, Magnesium and Potassium Supplements
 
bulletWater Cure
 
bullet Husband and Wife Story
 
bullet Persistent (Chronic) A-Fib (1)
 
bullet Persistent (Chronic) A-Fib (2)
 
bullet Two Ablation Procedures Necessary
 
bullet Early Focal Catheter Ablation Procedure 1998


 
bullet Cured after 30 years in A-Fib

11/21/09.  I’ll be 55 next month.  I was diagnosed with A-Fib over 30 years ago, but don’t really know how long I’d had it as I was mostly asymptomatic unless exercising during air pollution episodes (“red alert” days) and when sick.  I was in A-Fib 24/7 all that time.  We have no idea why I went into A-Fib.

My experience with cardiologists was hit and miss.  Early on I was told that they had never seen someone so young with A-Fib (at the time, I was in my mid-20’s), and some told me the best they could do was medicate me so I could walk from the bed to the window and back.  I changed doctors.  Others wanted to give me all kinds of meds, which I researched and refused to take.  I had one cardioversion which took for a few days; I didn’t try another.  In the end, I took digoxin for years (which did nothing much except minimal rate control) and then calcium channel blockers for about 10 years (which actually controlled my rate so that I could exercise moderately).  I refused to take Coumadin/warfarin (blood thinners) and took aspirin instead.  

This fall, I decided to have an ablation. I did a trek in Peru this summer and it about killed me.  I got so mad at my heart and at my cardiologist (who basically spent five minutes with me once a year and said my life was as good as it was going to get). I decided at the top of the highest pass in Peru to change cardiologists when I got back home.  
    In researching doctors in my area, I learned that ablation procedures have greatly advanced in the past few years.  I also knew that my risk of stroke was increasing with age and with the length of time I was in A-Fib (meaning I’d probably have to switch to Coumadin in the next 5 years or so).  So, I went to the new doctor (Dr. Marrouche). After doing the cardiac MRI, he felt I was a good candidate for an ablation.  Given my age and my risks with the history of A-Fib, I was willing to take this step for the possibility of no more meds in the future and an improved quality of life.  

The ablation was done by Dr. Nassir Marrouche, University of Utah Cardiovascular Center, Salt Lake City.  I’m no doctor, so don’t hold me to what was ablated — this is how I describe it in simpleton lay language:  pulmonary vein isolation, then all areas of fibrosis were scarred.  Dr. Marrouche does a cardiac MRI to identify all areas of fibrosis to determine whether you are a good candidate for ablation (i.e., too much fibrosis = not so good candidate).   

I am now 9 days post-ablation and still in NSR.  I’ve started walking in my neighborhood and am adding distance and speed with every day.  So far, I consider this procedure to be a miracle (and am keeping my fingers crossed). 

Michele Straube. Email: mstraube(at)mindspring.com (When typing this email address, substitute an "@" for the "(at)"---this substitution is necessary to prevent search engines from sending spam to this email address.)

 



 

bullet Switching from Metoprolol to nebivolol (brand name Bystolic)

     I take 5 mg tablet of Bystolic (nebivolol) from Forest Pharmaceuticals Inc. at night, because my cardiovascular nurse said people say they sleep better when they take it at night. I agree. I sleep better. I sleep more soundly. I sleep longer. It is as though I know I spend more time in deep sleep and enjoy the healing benefits of such a journey. I awake more refreshed.
    During the day, I increasingly feel more mental and emotional well being in general in all my affairs. My JOY is back!!!  Living is exciting again. My physical energy has not greatly increased which is because of the A-Fib condition, I suspect, rather than medications.
    Contrasted to Metoprolol (100 mg twice a day) which I took for 3 years, Bystolic seems like an upper booster with Metoprolol more of a dragger-down. It took a few days for me to notice my improvement because it was subtle and growing. I feel more like my upbeat self before I was diagnosed with Atrial Fibrillation. I feel more optimistic and hopeful. I love the results so far. 
    FYI I am also on Warfarin (averaging about 5 mg a day taken at night with the Bystolic), and Digoxin (0.125 mg) tablet taken in the morning. In summary and retrospect, maybe for me Metoprolol was a depressant as well as a heartbeat-slower.
    The contrast between Bystolic (5 mg once a day) and Metoprolol (100 mg twice a day) may also be because I take less medicine? Dosage?  I don't know. I did not take a lower dose of Metoprolol; I always took the same amount. 
    I really like being on Bystolic.  I feel lighter; I think my breathing is enhanced, easier.  I move with more vigor.  I even feel a bit more like exercising.  On the Metoprolol, I think I gradually became much more sedentary as time went by, little by little limiting my life more and more, even feeling less hope of ever reversing a subtly, invisibly advancing decline. Being independent and in control are most important to me.
    People who know me remark that I look better, more healthy now, even though I still have A-Fib.
    Best wishes, Rose. E-mail: rosevernier2(at)hotmail.com
    (There is currently [Oct., 2009] no low-cost generic of Bystolic.)


 
bullet

Not Necessary To Go To Top-Name A-Fib Centers To Have Excellent Care and Good Results

A DIFFICULT DECISION PAYS OFF
    I fought intermittent and chronic A-Fib through medication for ten years before finally undergoing a successful ablation in December of 2008.  For me, the decision to have the ablation procedure was a very difficult one. I have always taken great pride in my excellent physical condition and have lived a very active lifestyle, even when I was in A-Fib, except for brief periods when my ventricular rate was not yet controlled by medication.  My greatest fear in considering whether or not to have an ablation was that the ablation might leave me worse off.  It took quite a while to overcome that fear. 
    However, after the ablation I have now been free of A-Fib for nearly six months, except for a brief period I’ll explain later.  I am now off warfarin and take only 25mg per day of metoprolol just as a precautionary measure, something that I hope to completely eliminate within the next year. 
PHENOMENAL IMPROVEMENT AFTER ABLATION  
    Even though I thought I was in good physical condition before the ablation, able to do nearly any physical activity I wanted, my improvement following the ablation and change in medications has been phenomenal.  I have lifted weights as exercise for 30 years, something I continued even during A-Fib episodes, but now I find that I can lift more weight and do more repetitions than I’ve done for nearly ten years.  I’ve never been a runner, but now I feel so good that I’ve taken up running as part of my exercise routine.  I’m definitely very glad that I had the procedure done.

MY PERSONAL EXPERIENCE
    The information provided by this particular web site (A-Fib.com) was one of the biggest factors in my eventual decision to undergo ablation.  I used the web site extensively as a resource to help guide my decision-making regarding treatment options.  While I found the “Personal Experiences” section very helpful, I also began to realize that everyone is different in their experiences with A-Fib and their responses to treatment.  It was especially frustrating to me that in many cases the personal experiences did not provide enough information for me to compare my particular circumstances with others when trying to evaluate whether the path they had followed might also work for me.  Now that I have gone through a successful ablation procedure, I decided to write about my own experiences in the hope that they might provide a useful guide to others.  So that others might be able to relate my particular circumstances to their own, I have provided as much detail as possible.  I hope this will not prove too boring, but will instead allow someone to perhaps recognize similarities between our situations, and thus benefit from both my successes and failures.

FIRST A-FIB ATTACK 40 YEARS EARLIER
    I am currently 61 and will soon retire after 35 years as a university professor teaching business administration at Southern Illinois University Carbondale.  My wife, who is a nurse, and I have been married for 28 years and have an adult son.  For at least 30 years I have maintained an active lifestyle by exercising, including weightlifting, for several hours at least three times per week; but my first experience with A-Fib actually occurred nearly forty years ago when I was a graduate student.
    Although I was in my early twenties, it was a time in my life when I was under a lot of stress, both mental and physical.  When the A-Fib attack occurred, I had been studying, then got up to walk up several flights of stairs.  When I got to the top, I noticed my heart seemed to be beating unusually fast; but I attributed that to the long climb.  Although I did not realize it at the time, this pattern of A-Fib being precipitated by sudden exercise was one that would recur many times thirty years later.  In any case, when the fast heartbeat had not gone away after several hours, I went to the E.R.  They told me I had atrial fibrillation and admitted me to the hospital.
    I don’t know whether A-Fib was relatively uncommon then in the early 1970s, but I was kept in the hospital for four days. Every med student came by to listen to my heart.  On the fourth day I was told that if I did not convert to normal rhythm on my own that day, they would take me up to the O.R. and electrocardiovert me.  Fortunately, I did convert spontaneously that day, apparently while I was in the shower.  I was released to go home and was put on Inderal (propranalol) and Valium (diazepam).  Over the next several months I had no more A-Fib attacks, so was gradually weaned off both drugs.  To my knowledge, I had no other A-Fib attacks for nearly thirty years after that. 
    After college, I became more physically active, getting into a regular exercise routine that involved extensive walking, weightlifting, ballroom dancing, and an active lifestyle.  My weight and clothing sizes today are still approximately what they were in college, I think primarily due to the high level of physical activity I have maintained in spite of an occupation that is relatively sedentary.  When not in A-Fib, my resting heart rate is usually in the 50-60 range.

PVCS, THEN A-FIB
    About twelve years ago I entered another period of high stress in my life and began noticing a feeling that my heart seemed to be skipping one beat out of every three or four, except when I exercised.  These skips were eventually diagnosed as PVCs (premature ventricular contractions), and I was placed on a low dose of Calan (verapamil), which eliminated the PVCs.  To ensure that there were no structural heart problems, I underwent a treadmill stress echo, which I passed with flying colors.  There was only slight exercise-related hypertrophy, but nothing else.  After several months with no more PVCs, I was eventually taken off the Calan.
    About a year or two after that I began noticing that sometimes, when I started exercising, I would get a feeling that my heart was beating very slowly, but unusually hard.  One day as I carried a heavy load of garbage up our driveway, I noticed the sensation again.  As I reached the top of the hill, I was aware that my heart was then beating very fast.  I drove in to work, but the fast heartbeat continued.  It was then I realized this felt like the atrial fibrillation I’d had thirty years earlier as a graduate student.  An EKG later confirmed it was indeed A-Fib.  This was New Year’s Eve.  Again, I was not aware of it, but a precedent had been set. For some reason I still cannot fathom, I ended up in A-Fib for the majority of New Year’s Eves after that until the year following my ablation.  I’m aware of what’s called “holiday heart,” which is A-Fib that can be precipitated by heavy drinking; but I drink very little alcohol, even around the holidays.
    The physician who diagnosed this second A-Fib attack, who was not a cardiologist by the way, started me on digoxin. It did slow down my heart rate, although I had a low tolerance for exercise.  After several days on the digoxin, I converted back to normal sinus rhythm and stopped the digoxin.  I was given another stress echo, which I again passed, and no structural problems were identified.
PRAIRIE CARDIOVASCULAR CONSULTANTS
    After another month or so I had another attack of A-Fib, which again lasted a day or two; but I converted spontaneously.  While in A-Fib, even moderate exercise left me feeling short of breath and my heart beating very fast.  During this time I was not on any anticoagulant, although I have taken a baby aspirin every day on the advice of my primary-care physician.  My wife suggested I needed to see a cardiologist. So I went to one affiliated with Prairie Cardiovascular Consultants, a group centered in Springfield, Illinois, but with an office in Carbondale where I’m located.
    The cardiologist I saw started me on atenolol to prevent future A-Fib attacks. But it must have dropped my blood pressure too much, because after my first dose I could not get out of bed without feeling faint.  I do not remember precisely what other drugs were tried, but none of them were what I would consider true antiarrhythmics.  I believe most were either calcium channel blockers or beta blockers.  They all seemed to only moderately reduce the incidence of A-Fib, but did help me better tolerate being in A-Fib by lowering my ventricular rate during an attack.  During this time I might go several months or longer between attacks, or I might have an attack every month, but usually not more often.  Attacks usually lasted only a matter of days.

A-FIB GETS WORSE---AMIODARONE EXPERIENCE
    I eventually had an A-Fib attack that dragged on for several weeks.  My cardiologist decided to start me on Coumadin (warfarin) and a low dose of amiodarone (200 mg twice a day).  To me, amiodarone was a wonder drug.  Even though I was still in A-Fib, my heart rate eventually became nearly normal, even with exercise.  After several months, I converted back to normal rhythm and was taken off the Coumadin and amiodarone.  I was told to start the amiodarone again if I went into A-Fib.
SLOW, HARD HEARTBEATS
    I continued to have A-Fib attacks every few months. They usually lasted only a few days.  In every case, the A-Fib began when I had a sensation of a slow, hard heartbeat that was precipitated when I suddenly went from resting to exercise.  Surprisingly, exercise also often precipitated a conversion back to normal rhythm.  I started taking the amiodarone whenever an attack occurred, but then stopped it after I converted.  Because the slow, hard heartbeat always occurred at the beginning of an A-Fib attack, I questioned my cardiologist about this. He used an event recorder to identify what was happening.  He determined that when I felt the hard beating, my atria and ventricles were actually beating out of sync.  The atria were usually going about 100 beats per minute while the ventricles were beating at a much slower rate.  He thought that the reason it felt like hard beats to me was that the ventricles were trying to compensate for the lack of synchronization with the atria.  However, he never really explained why this would sometimes deteriorate into A-Fib.  In an effort to reduce the incidence of these “disassociation” attacks, I was placed on Toprol (metoprolol, 25mg/day as I recall), which did seem to help somewhat.
    During this same time I had also begun to read about some of the serious side effects of amiodarone, which concerned me greatly as I continued taking it, but only when I was in A-Fib.  Unfortunately, about this time my cardiologist left practice (to go into the ministry!).  However, the amiodarone seemed to be working. And my primary-care physician, who had firsthand experience with amiodarone and its side effects, was not very concerned due to the low dose I was taking and fact that I only took the drug when I was in A-Fib.
A-FIB ATTACK THAT LASTS SEVERAL MONTHS
    Eventually, I had an A-Fib attack that lasted several months.  I decided it was time to find another cardiologist.  My new cardiologist, who is also with Prairie Cardiovascular, questioned whether the amiodarone was really having much effect since I didn’t start it until I was in A-Fib. And most of my A-Fib attacks lasted only several days, a period he thought was too short for the amiodarone to reach a therapeutic dose.  However, I insisted that I thought the amiodarone worked and wanted to stay with it, something he agreed to.  He did decide, though, that instead of the Toprol that I had been taking on a regular basis, he wanted to switch me to sotalol, 80 mg per day.  The sotalol did seem to reduce the incidence of “hard beating” periods, and also the number of A-Fib attacks.  It also seemed to work quite well to slow my ventricular rate when I was in A-Fib.  My resting rate during an A-Fib attack would generally be 70-80, although with exercise I could get it up to 140 or higher pretty easily.  I continued on sotalol for several more years.
    Aside from changing medications, my new cardiologist also suggested that I might want to consider an ablation procedure.  I had read only briefly about this, but it seemed like it was still fairly new.  Also, I was still able to function quite well, even in A-Fib. A procedure so apparently drastic seemed unnecessary.  I decided to file it away for future reference, but continue treating the A-Fib as I had been.
    Over the next several years I continued to have A-Fib attacks precipitated by the hard beating that occurred with sudden exercise.  Although I tried to avoid sudden exercise, I found it impossible.  For example, one attack occurred when I stood up after a long airplane flight and simply picked up my carry-on bag.  Although exercise would precipitate an attack, it also frequently ended them.  In fact, many times this occurred while I was dancing, especially faster, more energetic dances.  My cardiologist and I began to joke about what we called the “cha cha conversion.”  As you can see, I tried to let the A-Fib affect my life as little as possible, staying fairly active.  The only time I really had to cut back on exercise appreciably was during the first few days of an A-Fib attack, when I usually had quite a low tolerance for any very strenuous exercise.
    Things continued like this for several years, but my A-Fib attacks gradually started to become more frequent and last longer.  I was concerned about the possibility of a stroke but really wanted to stay away from Coumadin.  Fortunately, research shows that for someone of my age with no other stroke risk factors than A-Fib, aspirin provides sufficient protection from stroke. (See in the FAQs section "Aspirin vs. warfarin [Coumadin].) With the agreement of my doctors, I increased my daily aspirin dose to one full adult aspirin.

THE ABLATION OPTION
    Because of the increased frequency and length of the A-Fib attacks, I decided I had reached a point where I needed to explore other options for dealing with the A-Fib.  I asked my primary-care physician for a recommendation to someone who might help me consider different options.  He recommended two electrophysiologists affiliated with Prairie Cardiovascular in Springfield, Illinois.  My physician indicated he had sent patients to heart centers throughout the U.S., and that he thought the two he recommended were as good as anyone in the country.  I decided to pick one (Dr. Brian Miller) who did not do ablations, so that he might be more unbiased about all the possible options.
    When I met with Dr. Miller, I explained my experience with A-Fib.  After a few minutes he said that he thought I was a perfect candidate for ablation, which I had not mentioned up to that point.  I explained my concerns about the procedure, that it was still evolving, that there could be serious (even fatal) consequences.  He eventually agreed that I was not ready mentally for the procedure, but he also indicated he thought I should stop taking the amiodarone. He counseled that even though I took a low dose, and only when I was in A-Fib, that amiodarone's effects could be cumulative, and that I had been using it for quite a while.  He indicated that, after I had been without amiodarone for long enough, he would like to start me on dofetilide (brand name Tikosyn).  As instructed, I weaned off the amiodarone.
MORE FREQUENT, LONGER (CHRONIC) A-FIB ATTACKS
    Over the next few months I began having A-Fib attacks that were extremely unusual for me.  Some started while I was asleep, which had never happened before.  Some lasted only a few minutes or hours, although my previous attacks had been for at least a day.  The attacks also became much more frequent, even several a day.  At this time I had also read more information about Tikosyn and realized I did not really like the path that drug would be taking me down if I started on it.  I decided it was time to look more seriously into the possibility of an ablation.  About this time I also had another attack of A-Fib that did not resolve, but continued for over a week.  I decided to re-start the amiodarone to see if that would stop it.  It did not, and the A-Fib attack went on for months.  I began to worry that I had gone into chronic A-Fib.  In fact, the A-Fib did not end until six months later when I was electrically cardioverted for the first time in my life during the ablation procedure.

CHOOSING AN A-FIB ABLATION DOCTOR
    I am very fortunate to have excellent health insurance that would essentially pay for me to have an ablation done anywhere I would want, so I began to consider the many options available to me.  Based on information I had obtained from this web site, I knew the major centers and many of the best-known physicians.  I talked with my primary-care physician and with my cardiologist to get their inputs.  In my mind, there are some definite advantages and disadvantages to each option.  For instance, I considered going to Bordeaux, often regarded as the top A-Fib center in the world.  I have visited France before and speak some French, so that would not be a problem.  On the other hand, my French does not include medical terms which would be a concern. And my wife, who might be called on to act on my behalf, speaks almost no French.  Furthermore, if problems occurred later, it could mean another long trip to go back there.
    Another option was to go to one of the major A-Fib centers in the U.S. While this would eliminate the language problem, it would also mean a long trip, being away from home for a period that could be quite long, and the necessity of a long return trip if problems developed later.  Also, these centers often have a long waiting list, and the well-known physicians are booked up far in advance.  Given that my A-Fib now appeared to be chronic, and knowing that ablation success rates are usually lower for chronic A-Fib, I did not want to wait any longer than necessary.  I also was told by my cardiologist that it is often difficult to get in touch with the big-name people if questions arise, because those people are just so busy with heavy demands on their time. 
    The person Dr. Miller had recommended for an ablation was Dr. Ziad Issa, who is also with Prairie Cardiovascular in Springfield, Illinois.  Springfield is about a four hour drive from where I live, so it would be a reasonable distance to travel.  Furthermore, my cardiologist, who had sent patients to some big-name people as well as to Dr. Issa, thought that the results obtained by Dr. Issa were as good as anyone else’s.  Furthermore, as luck would have it, a “friend of a friend” had recently had an ablation done by Dr. Issa.  I talked with her, and it sounded as though her A-Fib problems had been worse than mine. She had both A-Fib and A-Flutter.  She was now cured and was extremely happy with the work Dr. Issa had done.  I scheduled an appointment to meet with Dr. Issa and discuss the possibility of an ablation.
    For my appointment with Dr. Issa, I took along the list of questions from this web site, as well as other questions I had developed from my reading about ablation.  I found Dr. Issa very open, knowledgeable, and willing to spend time with me.  His answers all fit well with what this web site indicated are good answers.  He had been doing ablations for about 5 years and had done about 150 of them.  His success rate matched what I had been reading as the success rate for most large A-Fib centers.  He’d had only one problem, which was with a patient who developed pulmonary vein stenosis, and that was corrected with a stent.
    I came away from my meeting with Dr. Issa feeling very good.  I did think of a few questions afterward, so I called his office and was able to speak with his nurse, Leslie Ardebili and his medical secretary, Julie Reed, both of whom were very helpful.  One question I had was whether they ever had any patients who ended up worse off after the ablation.  The answer I got, which put my mind greatly at ease, was that as far as they knew, all of their patients felt better after the ablation. Even those who were not cured of A-Fib felt better as they were able to use drugs with fewer side effects or lower dosages of their drugs than before to control their A-Fib.  Dr. Issa had also mentioned that the procedure usually lasted 3 to 4 hours, whereas many accounts I had read of ablations talked of six hours or more.  When I asked Leslie about this difference, she indicated that as Dr. Issa and his team gained experience, they worked together more efficiently and were able to position the equipment in less time. So the procedure time was reduced.
ABLATION WITH DR. ISSA
    Based on the information I obtained, I decided to go ahead and schedule my ablation with Dr. Issa.  Although his office could have scheduled me sooner, I decided to wait until our university’s Christmas break so that I would be done teaching for the semester and would not have to miss any classes. 
TEE (TRANS-ESOPHAGEAL ECHOCARDIOGRAM)   
    I was told that I would have to start taking warfarin and that I would need to have a TEE (trans-esophageal echocardiogram) to check for blood clots in the atria, because I had been in A-Fib without being on warfarin.  Fortunately, the TEE could be done locally by my cardiologist the week before I was scheduled to travel to Springfield for the ablation.
    Once I decided to go ahead with the ablation I had no fear about that, but the TEE gave me a lot of concern.  Sometimes knowledge isn’t such a good thing, and I had read enough about the TEE procedure that I knew it wasn’t very pleasant.  Even though I knew I would be partially sedated, I was still very nervous about having a tube inserted down my throat.
    On the day of the TEE I reported to our local hospital, had my INR checked, and was given an ECG.  I was then sent down to the cath lab and prepped for the TEE.  We had to wait a while for my cardiologist to finish another procedure, and as I waited I could feel myself getting more nervous.  I was hooked up to a heart monitor, so my heart rate was displayed.  The nurse with me could see the rate kept going up. She told me to relax – something easier said than done.
    Fortunately, the cardiologist arrived, and they started injecting the Versed (midazolam) and Fentanyl for sedation.  They then sprayed my throat with something to numb it which, as they explained, made my tongue feel like it was swelling.  Again, not a comfortable feeling, but then the next thing I knew I became aware that I was trying to swallow and felt something in my throat.  The nurse told me the procedure was over and they were just removing the scope.  They hadn’t found any clots, so I was cleared to go ahead with the ablation procedure.  The TEE, or at least what I remember of it, hadn’t been as bad as I expected.
PRE-ABLATION  
    I had been told to report to the Prairie Diagnostic Center the day before I was scheduled for the ablation, so they could perform a CT scan of my heart.  The results of that CT scan would be combined with fluoroscopic images during the procedure to provide a 3-D picture that would allow Dr. Issa and his team to guide the catheters during the ablation.  They also needed to measure the diameter of my atrial veins to know what size catheter to use for the ablation.  One concern was whether there would be a problem getting a good CT scan, because I was still in A-Fib.  Fortunately, the staff indicated they had learned that they could still obtain a good CT scan, so that was not a problem.  After the scan was completed, then I went to St. John’s Hospital and the Prairie Heart Institute, where the procedure would be performed, to pre-register.  This involved more blood work and a chest X-ray.  Once finished there, I was told to report the next morning for my procedure.
THE ABLATION
    The day of my ablation I arrived at the cath lab waiting room first thing in the morning.  Because I had taken care of the pre-registration procedure the day before, I was able to go right back to a prep room where I changed into a hospital gown, had some IV needles inserted, then met with the anesthesiologist.  Although others on this site have described being awake during the ablation procedure, I was given the choice of either general anesthesia or “conscious sedation.”  I chose the latter.  I don’t think I would want to be totally conscious through the procedure, so I was glad that was not an option.
    I don’t know why it is, but hospital hallways and procedure rooms always seem exceedingly cool.  After having come in on a snowy morning with nothing to eat since the night before, I was feeling pretty chilled. But I got a pleasant surprise when they moved me onto the table for the procedure.  I was lying on a heated pad that felt absolutely heavenly.  There were people all around me, and one asked me to extend my arm.  That’s the last thing I remember until I became aware of movement and lights passing by overhead as I was being wheeled from the cath lab to the Cardiac Recovery Unit (CRU).

HEART BEATING NORMALLY!
    As the sedation gradually wore off, I remember one of my first thoughts was whether I could tell if my heart was still in A-Fib or beating normally.  I became aware of a regular beeping sound, which I assumed was a heart monitor.  It sounded fairly slow and steady, which made me very happy.  As I became more aware, I realized the sound was coming from above my head, so I craned my neck around to look and realized I could see a number that looked like 60-something.  My resting heart rate when not in A-Fib had been about 60 or less, but was in the 70-80 range with A-Fib.  I hoped this was my heart rate.  It didn’t appear to change much, but I cranked my head around every minute or so to be sure it was still in the 60 range.  It stayed there.
    Before the procedure, both my wife and I had been told that the procedure would probably take about 3-4 hours.  Just a little over an hour after they took me in for the procedure, Dr. Issa called for my wife in the waiting room.  She said she knew it was going to be either really good news or really bad news.  Fortunately, it was good news. The procedure had gone extremely well. They had stopped the A-Fib, ablated around the four pulmonary vein openings, and found no other areas with potential to generate A-Fib. So the procedure went very quickly.
CHEST PAIN
    One thing that I don’t remember other accounts of the ablation procedure mentioning, so it was something for which I was not really prepared, was the level of chest pain following the procedure.  I really felt as though a horse had kicked me square in the middle of my chest.  It was not a sharp pain, but felt like the type of pain from a really bad bruise.  Anything other than a very shallow breath was very uncomfortable because of the pain.
    Part of the various devices that were hooked up to me in the CRU must have been something that monitored how deeply I was breathing.  If I was not breathing deeply enough, apparently a cause for concern, an alarm would sound and the nurse assigned to me would yell “breathe deeply.”  This became a bit of a game as I tried to breathe just deeply enough to avoid setting off the alarm, but shallow enough to avoid much chest pain.  For some reason, I never thought to ask for anything to control the pain.  I think I was just happy to be back in normal sinus rhythm and wanted to avoid anything that might upset that.
RECOVERY IN THE HOSPITAL   
    The only problem I had was that right after my procedure my blood pressure was rather low.  They thought I might be dehydrated, so they gave me several bags of I.V. fluids.  That brought the pressure up somewhat, but still not to a normal level.  I think they eventually needed my bed in the CRU, because they decided to go ahead and move me to the cardiac telemetry unit where I knew I’d be staying overnight.  On the CRU they had been measuring my blood pressure through an arterial line that had been inserted during the procedure, but was taken out before moving me from the CRU.  On the floor, they checked my pressure with a regular cuff. It showed low normal, so the arterial line might have been inaccurate. 
    I also had a urinary catheter that had been inserted during the procedure, and that was removed on the telemetry unit, which made me a lot more comfortable since I could then move around somewhat normally.  I’m a big believer in becoming mobile as quickly as possible after any kind of surgery. So once the catheter was out and my blood pressure appeared to be stabilized, I got permission to get up and start taking short walks, which felt really good. However, the chest pain and gauze pads in my groin where the incisions had been made to insert the catheters, kept me from walking very fast.
    That night in the hospital was not exactly the best night’s sleep I’ve ever had.  Even though I was given a couple of Tylenols for pain, my chest still hurt very much, and it was difficult to find a comfortable position.  Lying on my side, I could feel my heart beat. It just about drove me crazy waiting to see whether I would go back into A-Fib.  On my back, I didn’t feel my heartbeat as much; but the pain was worse.  I eventually managed to adjust the bed into some crazy half-sitting, knees up position so I could get some sleep.
    The next day, Dr. Issa came to see me and explained that the procedure had gone very well.  They needed to do some more lab work and another chest x-ray; and if all that was okay, then his nurse would come in and discharge me.

DISCHARGED
    Upon discharge I returned home with orders to take it easy and not walk up or down stairs for a couple of days, then gradually resume my regular activities except to not lift any heavy weights for a week.  I probably overdid it a bit by going in to work the first few days, because the chest pain did get quite a bit worse when I was walking.  Fortunately, Dr. Issa’s nurse, Leslie, was always available to speak with. She told me I had probably just over-exerted and needed to actually take it easy.  The chest pain gradually went away, although it took at least several weeks.  During this time I also had frequent feelings of skipped beats and occasional, perhaps once or twice a day, feelings of A-Fib that lasted only a few seconds.  Over time these also gradually decreased.
    I reported back for a checkup about a month after the procedure and was told everything was going well.  Then, about three months after the procedure I had an attack of A-Fib on the first day of my vacation, while I was on a small boat in the Caribbean. So there wasn’t much I could do but live with it.  The attack started while I was sleeping on my left side, but then it went away some time the next afternoon, having lasted only about 12 hours.  However, this was very discouraging as I thought it might be a sign the ablation had failed, and I would begin having A-Fib attacks again.  I contacted Dr. Issa’s office immediately after returning from vacation and was told that the attack was actually a good sign because I had converted spontaneously, and that I shouldn't be concerned.  Fortunately, I have had no other attacks since then.
    I continue to feel better all the time.  I still have occasional feelings of skipped beats, but these are usually relatively infrequent.  Every few days I may have a feeling of A-Fib that lasts only a second or two.  Before I could stop taking the warfarin, I was required to wear a Holter monitor for 48 hours to ensure that I was not having any more A-Fib or A-Flutter.  During that 48 hour period I did have the feeling of a short attack of A-Fib, but the report came back that there was no sign of fibrillation or flutter. So these feelings may have been just a series of PVCs.

CLOSING ADVICE
    Now that I am apparently cured, my advice for someone with A-Fib would be to thoroughly investigate all your options and learn as much as you can.  Although the ablation procedure is still being improved, I think it has reached the point that it is the closest thing to a cure currently available.  I would also say that my experience shows it’s not necessary to go to one of the top-name A-Fib centers to have excellent care and good results.  However, it is necessary to thoroughly investigate the person who will be performing the procedure to be sure his/her skills are up to-date and that he/she has the requisite experience and knowledge to provide a high probability of success.  If anyone who reads this has any questions, please feel free to contact me.

Greg White
Email: ga2607@cba.siu.edu
 

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LIVING WITH A PACEMAKER/ICD

    (Ira David Levin shares his experience living with an ICD/Pacemaker. He had A-Fib but was cured by a Pulmonary Vein Ablation procedure. The ICD/Pacemaker is for other Ventricular heart problems.
    Ira was born in Boston and returned there after college, where he met his future wife who was visiting from Italy. They moved to Italy in 1970, because she had to return for family reasons. He taught at the American Overseas School of Rome---Geography on the middle school level and Ancient History and Archeology at the high school level--for 25 years before retiring in the mid-1900s. His two children also attended American Overseas.
    After retiring, he started a small travel company with an ex-history teacher from another American school in Rome. He loves Italy and wants to introduce Americans to the depth of beauty and extraordinary variety Italy has to offer.)

30 Years of Heart Problems
    I have been a heart patient for just short of 30 years. I began this career in 1980 with a heart attack so mild it wasn’t properly diagnosed until 4 days after the event, and I never did go to the hospital. That heart attack was preceded by more than 15 years of sedentary life augmented by indulgences in every form of coronary risk possible: poor diet, lack of exercise, alcohol consumption, smoking and, worst of all in my humble opinion, family history: my mother’s side of the family was rife with heart disease.

Swimming Therapy
    As a former competitive swimmer in college, my answer was to return to the pool with a vengeance, not so much motivated by a belief in healthy living, but more to demonstrate to myself that I was hale and hearty and not an invalid. I began with a program not much different from my college training routine and maintained it for 25 years slowing down as I aged. I went to an improved diet, although I continued drinking wine, since I have been living in Italy since 1970, and the wine here is excellent and varied. Fortunately I had given up Smoking 5-1/2 years before the first heart attack.

Heart Setbacks
    And so life went on swimmingly until 2001, when during a period of mild depression, I had another mild heart attack and drove myself to the hospital.
    I recovered and returned to my swimming and walking routine and was in excellent shape for a 68-year old. The next summer I did my usual swimming routine in an outdoor pool where the water was much cooler than usual. That resulted in my third very mild heart attack. But after the usual convalescence I returned to my swimming routine with as much determination as ever.

A-Fib
    The following year I developed atrial fibrillation of the paroxysmal type and was put on sotalol by my cardiologist. This was a new experience. I had understood heart disease as a plumbing problem, but this electrical rhythm disorder was something quite different.
    My cardiologist in Rome, who is first-rate, careful and honest, counseled against an ablation in Rome, because at that time (6 years ago) he held the success rate not good enough. I researched A-Fib on the web and, with the advice of a cardiologist friend of a close friend of mine, I had an ablation done in the town of Asti where a particular electrophysiologist had established a first-rate team. I didn't go to a much better known and more controversial EP in Milan.

Successful Pulmonary Vein Ablation
    The procedure went well, and I was one of the lucky 50% whose ablation worked on the first go. And so I didn’t have to return for a touch-up ablation, as the other 50% have to do. The hospital monitored me every 6 months for 2 full years after the ablation to see if the A-Fib had returned, and I happily reported each time that all was well.

Heart Setback (Not A-Fib)
    I returned to the pool and unwisely continued pushing the envelope until things began to turn nasty. One day in 2006 I really overdid it in the pool and set off dyspnea (labored breathing) and a tachycardia where the heart rate was so fast it seemed like a steady-state signal. It passed after a couple of minutes and I returned to the workout, but much more slowly.
    Three days later the next time I went swimming, I didn’t feel right; so I contacted my cardiologist. I now had PVCs on an irregular basis and was put on beta blockers which helped control them. Unfortunately, I couldn’t take a regular dose of beta blockers, because by nature I was slightly bradycardic with a normal pulse rate of 58-59 bpm. With beta blockers and other heart medicines such as ace inhibitors and calcium channel blockers, my rate went down into the mid 40’s and sometimes into the 30’s at night. My cardiologist mentioned the possibility of a pacemaker, but felt it wasn’t necessary at the time.

Pneumonia and Heart Tachycardia
    Then a chain of events and their cardiac impact pretty much took over my life for most of 2008. After a modest flu, I suffered a stubborn Bradycardia of 38 bpm that after 5-6 hours left me feeling quite weak. I went to the emergency room. After bringing my rhythm back to normal, they admitted me not to the cardiology ward which had no room, but to another department where there was an available bed. Two days later I had pains in my back, which turned out to be a pneumonia caught in the hospital.
    This naturally put a strain on the metabolism in general and the heart in particular and set off a tachycardia of something like 220 bpm. I felt very strange and did not understand what was happening. It felt like an extreme state of nervousness, so strong that it seemed palpably physical. I was convinced it was a nervous reaction to the news the doctor had just given me of the positive result of a chest X-ray I had done earlier that day. I didn’t react to the tachycardia for close to 5 minutes and then started down the hall to ask the doctor for a tranquilizer.
    Fortunately, the doctor and 2 nurses were in the corridor and saw me weaving as I walked and immediately understood the gravity of the situation, which I still didn’t. They slammed a wheelchair under me and brought me back to my room, set me on a monitor and administered a massive dose of amiodarone intravenously, which brought the pulse rate from 220 to 80 in short order. I had been panting uncontrollably trying to get the oxygen that wasn’t arriving from the blood my heart wasn’t pumping, and I heard a nurse inform the doctor that she couldn’t find any sign of my minimum blood pressure. But despite these obvious signs, I still didn’t understand the seriousness of my situation.
     They then put me out and did a conversion on me. When they left me, I was fatigued, but quite relaxed, and I thanked them for their efforts. The next day the doctor returned to see how I was doing and made the statement that the only reason I survived the previous night  was because I had a very strong heart, which I ascribe entirely to the 25 years of serious swimming. I also began to realize the seriousness of what I had been through the night before.

ICD and Pacemaker
    I was transferred to the cardiology department, and a few days later I was on the table in the electrophysiology lab where they sought to recreate the crisis I had experienced, so they could map the point of origin for future reference in case a ventricular ablation became necessary. With his catheters the electrophysiologist went into the left ventricle where the PVCs originated, expecting to find the starting point of the tachycardia there. After 45 minutes without success they switched to the right ventricle, & within 5 minutes they found the sensitive point at the juncture of the ventricle and pulmonary artery. They installed an ICD and set the maximum at 120 bpm and the minimum at 50.

Pacemaker Leads Infected
    5 months later during a trip to the States, the pacemaker turned out to be infected at the end of the leads in the heart. That meant the ICD had to come out, followed by 6 weeks of intravenous treatment with vancomycin in a rehab hospital, after which I got a new ICD implanted before returning to Italy. I would love to have a ventricular ablation in addition to the ICD, but I have a feeling that a ventricular ablation is trickier than an atrial one and that fewer people know how to do it as well as an atrial one. (Editor's Note: See Ablation for V-Tach.)  

Living with an ICD/Pacemaker
    I am able to live a more normal life with this problem than I was with my A-Fib, although I am now 5 years older and about to turn 75. So now I swim more for muscle tone than for aerobic value. I hope to stay out of hospitals for a while except for outpatient tests and to visit friends, who may be unfortunate enough to have to be admitted.
    In the 14 months since I had the pacemaker implanted, I haven't had a single shock. But I have had several pacer signals which interrupted tachycardia runs after 13 or 14 beats, and one or two where the heart interrupted the run by itself after 7 or 8 beats. I didn't feel these signals and only learned about them later during a routine check of the pacemaker, when they download all the data.    
    During my stay at the rehab hospital, I didn't have a pacemaker and had a run of 7 beats of tachycardia which showed up on the hospital telemetry. The alarm sounded, and the nurse rushed frantically into the room expecting the worst only to find me calmly sitting in the armchair next to my bed reading. My heart had interrupted the run by itself and was totally asymptomatic.
    My pacemaker limits are set at 50 and 120, since my normal heart rate without medicines is 58-59. With medicines I sometimes go down to 45, which the pacemaker easily keeps at 50, and I feel nothing. But there are occasions when the Bradycardia wants to go lower, such as 30 bpm (one beat felt & one skipped) or 38 bpm. On those occasions I can feel a tug of war between the Bradycardia and the pacemaker. I will have the Bradycardia for 30 seconds to a minute or two. Then the pacemaker will give me regular beats for a minute or so before the cycle begins again. Had I not had the pacemaker, the Bradycardia would have stayed  steady for hours and hours leaving me incapacitated. 

Pericarditis
    My personal case history also includes 4 episodes of Pericarditis, one after each of the last 2 heart attacks, one after the ablation and one in 2006 apparently unrelated to any event. As I understand it, Pericarditis is not life-threatening if treated promptly, but it causes the most unspeakable pain with each heart beat and another equally nasty pain with each breath. The worst one I had lasted about 15 hours and was utter agony, unresponsive even to several doses of morphine. Lesser versions lasted longer (up to 2-3 days), but were only slightly less painful and unpleasant.

Cardiac Asthma
    My cardiac career also includes cardiac asthma as the result of an immune reaction where a mild flu was mistaken by the immune system as an allergy. After 2 weeks of asthma where the usual medicine had no effect, I ended up in the hospital with a near edema due to the eventual weakening of the ventricular function, which was quickly taken care of by the staff once I was in the hospital.

Importance of Exercise
    Even though my enthusiasm for swimming has got me into trouble, it is great for the heart, for muscles and for my psyche. I will do it as long as I can. I plan on swimming into my 80's, God and good health willing.
    I am enjoying a really good period right now pretty much free of PVCs. I now have the wisdom not to overdo it with a good thing, swimming. Swimming is an excellent form of exercise, because it exercises a vast array of muscles throughout the body, and because it rids the body of some of the annoying pains that come with old age. But for those people for whom swimming doesn’t come naturally, there are other forms of exercise that give similar benefits. Cycling, walking up long hills, and fast or even moderately paced walking on a level surface all have beneficial effects on the heart. Moreover, exercise is an excellent bulwark against depression.

Ira David Levin
Email: illit@lcnet.it


 

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Second Ablation at Provo, Utah by Dr. Chun Hwang 

3/4/09
I was treated by Dr Chun Hwang at the Central Utah Clinic and Utah Intermountain Hospital in Provo, Utah. (Editor's Note: Dr. Hwang is one of the pioneers of A-Fib ablation in the Western US. He has done over 2000 ablations. He also works at Cedars Sinai Hospital in Los Angeles on an as needed basis.)
    I am writing this to reassure others with atrial fibrillation (intermittent or chronic) that the ablation procedure (also called PVI or pulmonary vein isolation) is a safe, effective and painless technique which is better than treatment with drugs. As I understand it, treatment of A-Fib with rhythm controlling drugs is not ideal, because of the dangers and side effects of these drugs and generally their poor performance. While treatment with drugs to control only the rate of A-Fib accepts the deleterious effects of A-Fib and requires chronic anticoagulation with warfarin (Coumadin) to prevent atrial appendage clot formation and possible embolization to the brain (stroke).

     I contacted Dr Hwang by letter in November 2008 and a week later his secretarial staff called me and gave me the appointment date/time for a CT scan of the chest and a consultation with Dr Hwang. Of course they also requested copies of my pertinent medical history. The waiting time to see Dr Hwang was 3 months. I received an information package a week before the appointment, and a glance at Google Maps was helpful for finding the hospital and clinic parking lots in Provo.

    I went to Provo a day early and found the Cotton Tree Best Western motel quite comfortable, located a half mile from the medical facilities. My CT scan appt was at 2PM and consisted of changing into a scrub top, having an iv started and having blood drawn for kidney function tests so the contrast media would not cause any ill effects. About 2:30PM I was taken into the CT room and told how to position my arms for the 4 1/2 minute CT scan in an open machine. Several deep breaths and a warm feeling from the contrast media, then it was over.

     Dr Hwang was punctual and spent about 15 minutes with me after having reviewed my records and the CT scan. He said he would do the ablation, answered my questions and instructed me be admitted to the hospital the following day.
    That next day I skipped breakfast and was admitted and taken to a private room on the cardiac telemetry ward where skilled nurses started an iv, put a pulse oximeter on my finger and hooked up the deck of cards sized wireless telemetry transmitter. 
    Shortly thereafter one of the male RNs from Dr Hwang's lab came for me with a wheel chair, and in the lab 4 or 5 other male RNs made me welcome with various skin patches, some shaving, IV tubing and positioning adjustments on the operating table. Sleep came without warning, and the ablation was done.
    I awoke in the private room on the cardiac telemetry ward in no pain or discomfort with a urinary catheter in place. Under sedation I recall several nurses making visits to my room, blood pressure checks, etc for the next 4 to 5 hours. Then when I was able to stand and converse, the catheter was removed and I was allowed to go to the BR. Dr Hwang came by, and a few hours later I had dinner. I slept well; and the following day Dr Hwang visited me again, gave me my instructions (no lifting or straining for several days) and prescriptions (including one for warfarin for 6 weeks) and discharged me. I was driven back to the motel where life continued as though nothing had happened.

     I hope anyone considering the ablation procedure might be encouraged by my experience and that they can then resume normal life without the anxiety of never knowing when A-Fib will recur or a stroke become evident.

     I will respond to anyone who emails me for more information. Thanks to the author of this website...a marvelous asset. Ed  ewjili (at) hotmail.com (The "@" is written as "at" to prevent access by spam mailing lists.)


bullet    Ablation for Persistent (Chronic) A-Fib at Chapel, Hill by Dr. Paul Mounsey, UNC
    (Wes lives in Cary, NC.  He worked as a programmer for IBM and RTI International and retired in 2008.  Gardening and home projects are his hobbies.  He is married (39 years) with a son and daughter living in the area.  He grew up on a farm in South Carolina and still owns 14 acres of that land.)

    Wes first developed A-Fib in October 2005.  He was electrocardioverted in November 2005.   He still had a few episodes of A-Fib that reverted by use of Rhythmol and a good night's rest.  (In Feb 2007 he decided to lose weight and joined Weight Watchers at Work.  He lost 30 pounds to reach his goal, and became a lifetime member.  He considers it the best money he ever spent.)
    In June 2008 he reverted back into A-Fib due to an adrenaline rush.  The rush came from a dream in which he was in a vehicle accident.  He woke up at 120 bpm.  His cardiologist concluded he was in persistent (chronic) A-Fib,  and that he should consider an ablation procedure where they zap parts of the heart to stop the A-Fib.  His Cardiologist, Dr. Sunil Desai,  recommended he contact a "new guy" at UNC HealthCare in Chapel Hill, NC.  That was Dr. Paul Mounsey.  It took 6 weeks to get an appointment with Dr. Mounsey and another 6 weeks to get the catheter ablation scheduled.  He searched the web on A-Fib and found A-Fib.com to be the best overall site for information.

 Why Wes Decided on Pulmonary Vein Ablation

I went a total 360 degrees in my decision making process.  I was geared up for ablation and was armed with A-Fib.com's questions when I met with Dr. Mounsey.  Dr. Mounsey answered most of the questions before I could ask them.  I felt comfortable with the ablation, but the doctor's discussion of Tikosyn had me leaning toward the medication route. 
    I slept on the decision over the weekend which was good.  By chance I emailed Steve at A-Fib.com because the site still had Dr. Mounsey at the University of Virginia Medical, and I wanted Steve to know he was now at UNC. 
    I told Steve I was leaning to medication, and Steve provided information that convinced me to go the ablation route.  I agreed that I had not considered there was no long term data on Tikosyn, and that it could always be a second option if the ablation was not successful.  My wife had not let her feelings be known until the decision switch. She told me she thought ablation was the best first choice.  That's why I finally decided on having an ablation.

I had considered going to Dr. Wharton in Charleston, SC, because I met someone locally who had it done in Charleston.  But my meeting with Dr. Mounsey convinced me that they both used similar if not identical techniques.  Traveling to Charleston would have been a 250 mile trip and a lot of inconvenience for my family.  I decided that UNC was my best option.  Dr. Mounsey was quite candid and informed me that no procedure was fool proof, and all had risks.  He said that what was done during the ablation depended on what they found once they reached the heart and began the mapping.

I recommend the following book as a great help in making medical decisions.  THE PATIENT FROM HELL (How I worked with my doctors to get the best of modern medicine and how you can too) by Stephen H Schneider.   While it concerns the author's battle with Lymphoma, it offers a lot of insight into how any medical issue can be customized to a real patient and not a statistical average. 

 Wes's Story

      I began writing this account after I returned home from the hospital, but I did not finish it until today.  Now it is 7 weeks today since I had my ablation.

I had a Catheter Ablation to eliminate my Persistent Atrial Fibrillation and restore me to Normal Sinus Rhythm at UNC Hospital in Chapel Hill, North Carolina on Tuesday Sept 9, 2008.  Dr. J. Paul Mounsey and his team performed the procedure.  He had worked at The University of Virginia before coming to UNC Hospital to build an electro-physiology program there.


 The Ablation Procedure 

I checked in at 7 AM.  The last thing I remember is having all these monitoring leads put on me around 8:15 that morning.  (I had about 30 extra leads added mainly to my back since I agreed to take part in an A-Fib study that Dr. Mounsey was doing.) They said I was being injected with a sedative to relax me, and man did it.  The next thing I know I was having wild dreams and I could hear the recovery room people telling me to keep my legs straight.  I kept trying to bend them, and they must have had one person on each leg holding my knees down. 

It took me maybe 5 minutes to be able to settle back to reality.  I asked the time, and it was 5:30 PM!  I had slept the whole day away.  I was taken way out with anesthesia and had a breathing tube while unconscious.  I probably should have required more information about the anesthesia and breathing tube, but I had been under the assumption I would have something like Versed where I was semiconscious.   While they keep some A-Fib patients awake because they have to map areas and induce A-Fib, I was in A-Fib all the time with a mix of normal and fast heart beats.   I do remember asking if my anesthesia was all IV, and the Nurse-Anesthesiologist said it would be a mix of IV and gases.  
    On my Oct 15 follow-up visit, Dr. Mounsey explained that it was desirable to have as shallow breathing as possible during the ablation, and that they did this by using general anesthesia and a breathing tube.  I also had a Foley catheter inserted to collect urine. I did have a sore throat for a week or so but nothing excessive.   One night I got some Halls cough drops to soothe the throat, and I still have half the pack I was given. 
    On my follow-up, I asked Dr. Mounsey if I could have had a sedative instead. He said yes, but that there were drawbacks such as if I dropped off to sleep I might snore. The vibrations from snoring could affect the ablations or at least postpone some work until I stopped snoring.  I finally decided that though I did not want general anesthesia which  may have some increased risk, so did ablation isolations where my movement or reactions could affect the isolations. 
    All I can say is to be sure before hand what kind of anesthesia you will be having so you will not be caught by surprise as I was a day before the procedure.  At the follow-up visit he also informed me that at the end of the procedure they can also increase the depth of the breathing to exercise my lungs to help clear them and improve function before I was awakened.

 In The Recovery Room
 
I remember talking with the recovery room staff, but not a whole lot of detail.  They let my wife have access at some point in time, and shortly thereafter I was taken to my hospital room.  I arrived and got the regular meal.  I don't remember what it was, but I wolfed it all down with no problem while still being almost flat on my back. 
    That Tuesday night I was wired, I suppose because I had slept all day.  About 9 that night I told my wife to go home as I could get to the bathroom on my own and felt fine.  The groin was sore, but once I had reached the required time on my back to insure the catheter punctures were healing and getting the Foley catheter removed, I could move around very well although I was still attached to one IV drip.  I asked for an icepack for my left groin.  Their "icepack" was very creative.  They took two new zip lock bio-hazard bags and double bagged the ice  and wrapped it in a towel, which was probably better than the cost of a regular icepack like I bought when I got home. 

I had a heparin drip which was removed the next morning. Then I started getting Lovenox injections until my Coumadin level built up.  The Lovenox injections are done in belly fat and will leave some bruising.  You only get 2 shots a day for 3 days.  They made me give myself one injection, because sometimes you are discharged before the last shot is due.  I was kept two extra days, so self injection was not necessary.  I had given myself allergy injections years ago so it was not much different from those.  The needle is very small, and the needle slides in with hardly any sensation.  The injection is a good amount though and it mildly stings for a minute or so once injected.  On a scale of 1-10 it was a minor irritation at a 2 or 3 at most.  These belly bruises were slowest to fade and left a tiny knot where the needle was inserted.


I don't know if it was the Foley Catheter for urine, or just the effects of anesthesia, but I did not start producing large amounts of urine, and I really had to strain to urinate.  I am not sure how much saline I got during the procedure, but I figure it was at least 5-7 liters.  When I entered the hospital I weighed around 165 in shorts and T shirt, and by Thursday morning I was weighting in at 187 pounds.  Anyway the excess fluid diluted my potassium.  Since oral lasix was not working as well as expected, I was put on 80 mg IV Lasix as a diuretic, and potassium was added to replace what I lost.  Man did that lasix work. I got the injection at 6 am and by 8 am I had produced 2 liters of urine and lost 4 pounds in 2 hours.  I could almost hear the water filling my bladder.  The Sodium is not excreted as much, so as I lost fluid my sodium level rose to normal.  According to Dr. Mounsey, the saline IV helped keep my heart plump and stable to facilitate better ablation isolations.  I have to stay on Lasix because the HCTZ (Hydrochlorothiazidg for fluid retention) I had been taking cannot be taken with my new antiarrhythmic medicine Tikosyn.


 Ibutilide, Tikosyn and the Recovery Plan

My ablations alone did not return me to normal sinus rhythm, so  Ibutilide (Corvert)  was used to convert me.  At my follow-up visit I asked if it was preferable to an Electrical Cardioversion, and decided that considering all the ablations it was probably better to get the drug instead of a shock to the heart.  Dr. Mounsey also wants to keep me on Tikosyn for 6 months to give the heart a chance to relearn a normal rhythm.  I plan to stop it after 6 months to see if I can stay in normal rhythm on my own, but I may have to remain on Tikosyn if I revert.  Either that or another ablation.  I have 6 months to think about it and I am hopeful I will not need it.

I was started on the largest dose of Tikosyn 500 mcg; but my Q-T interval got too long that they cut the medication down to 125 mcg.  I don't think I was ever on 250 mcg.  Going to that level got the Q-T interval back in control.  Tikosyn must be taken at fairly strict 12 hours intervals (8 am and 8 pm is my schedule), so I use several alarms to remind me---two cordless phones, the cell phone and a watch with alarm.  It works so far.   I missed only one dose.  I had to modify my rules to take the pill before turning off any of the alarms.  One evening I got so obsessed with resetting the alarms that I forgot to take the darn pill.  I keep a glass of water ready so all I have to do is grab the pill and swallow it.   I was supposed to be released on Friday, but I did not get released until Sunday.  After 3 doses of Tikosyn at 125 mcg, my Q-T interval was steady and at an acceptable value.

 The Hospital Stay

I ended up being in the hospital five nights instead of the originally planned 3 nights.  Because of the two extra nights, I ended up celebrating my 62nd birthday in the hospital.  All the hospital personnel were great.  The food was institutional though.  What really got me was the "standard diet" breakfast meal was eggs, hash-browns, 2 sausage patties and a plain white flour biscuit with white gravy.  Not even a whole wheat biscuit!  I have to put in a jibe that this was a substandard not a standard diet. 

Another aggravation was the mattresses were very uncomfortable, and the bedsore prevention made for random compressor noises all night.  Fortunately one nurse told me where the switch was to stop that aggravation.  If I have to return to that hospital for any reason, I will be taking my own memory foam mattress topper with me unless the hospital provides a better mattress.  Lying on my back, and I think the lack of give in the mattress gave me back spasms that have not totally healed yet.  The cure has always been hamstring stretches on my left hip; but that was the leg where most of the catheters were located, so stretching was limited until the catheter punctures healed.

 Groin Bruising from the Ablation Catheters  

I knew my groin was going to be quite bruised, but I did not really understand how sore it was until it actually happened.  The left side was dark purple, and there were some small knots where the catheters were inserted.  7 years earlier I had a catheter experience about 7 years and I kind of knew what to expect.  There was pain - spasm like - that I attribute to the bruising, but ice-packs, warm packs and Tylenol kept the pain bearable.  The spasms were not constant, but correlated to the amount of time I was not lying fairly flat.  Once I got rid of all the fluid, then being on my sides was preferable to my back.   After the procedure I had to be careful to not sit or stand too long.  Getting horizontal at regular intervals helps.  I also found this thermal pad that uses some kind of clay encased in plastic, then fabric that works well to apply heat - much better than a heating pad.  You microwave it for about a minute and a half and it stays warm for around 2 hours. 
    I went on a 4 hour car trip 17 days after the procedure and did not walk much that weekend, so I ended up with fluid retention and some shortness or breath. 
    Before the ablation I did have hamstring problems in my left leg. The bruising aggravated the hamstring and contributed to my discomfort.  Most of it is gone now.   The bruising slowly drifted to my inner thigh, calf and down to my ankle as it slowly faded.  The bruise was the size of my hand on my thigh, but down to the size of my index finger after it reached my ankle.
    (Author's Note: It's somewhat unusual to have this much bruising and pain at the catheter ablation site.)

One personal account said they were up mowing the lawn in 3 days.  I read more accounts and the worst case was about 3.5 weeks to get back on a bike, so I knew the range of recovery was wide.  After about 8 days I felt well enough to slowly take a mile walk at about 2 mph.  from my house I can walk a gentle grade about half a mile and then turn around and the rest of the mile is down hill.  I have been trying to maintain two round trips each day.  I was progressively getting better when all of a sudden I started getting a mix of fast and slow beats.  I was relieved when they told me that part of the variation is the heart tissue healing after the ablations.  That can take a month or so to get back to "normal". Last Friday I checked with Dr. Mounsey to reassure myself that the fast and slow beats were normal to the healing process. 
    On day 13 after the procedure, I went to get my electrolytes checked with my GP and my BP was 140/86 and my heart-rate 106.  My GP took an ECG, and the rate was a normal sinus rhythm. A call to the cardiologist reassured me that this was part of the healing process.  After a nap it dropped back to the 85-90 level.  So the range of heartbeat since the ablation has been as low as 55 and as high as 103.  Later that third week my heart rate dropped back to the 64 to 72 range which is when I took the car trip.
I have randomly checked my heart rate since the procedure, and it has been from 55 to 115.   This cuff can detect irregular heartbeats, but not NSR.  The last reading of over 100 was on day 24 following the procedure.  The last day over 80 was day 26.  I am now at day 30 and my goal is to walk 3 miles per day at 3 mph.  I will break that into two walks.  For the past 4 days my rates have measured 63-68.  For as long as I can remember I have a rate in that range (lower when I was still jogging).  I will warn you that it is easy to get obsessed with taking your BP and pulse.  I logged mine. Some days I didn't take any measurements, on other days I measured my pulse and BP 25 times per day depending on how concerned I was. 
I was never given specifics on how to regain conditioning after an ablation, but I have listened to my body.  I go for my one month follow up next week and will ask for more exercise specifics then.  I really thought I would be back 100% pre-A-Fib by now, but I feel I am more like 80% but feel poised to get back to being in condition.  I asked Dr. Mounsey how to best condition myself, and he told me that what I was doing was fine.   He said to compare my current capability to walk that half mile grade to how I walked it while I was in A-Fib.  That was a reassuring measure since my first walk after the procedure was so much better than during A-Fib.  During A-Fib I would have to rest once or twice in that half mile.

 Follow-up Meeting with Dr. Mounsey

I had my follow-up on Oct 15 which was 5 weeks and one day after the procedure.  I think I got most of my questions built up over the last 30 days answered to my satisfaction.  Dr. Mounsey said that my procedure was not the most extensive he has done but it was on the extensive end of the scale.  He said I was still healing, and it may take a few more weeks.  He explained that some of the isolations may cause irritation on the outside of the heart wall which may cause the heart to rub against the containing membrane and cause brief discomfort.  I had experienced some of this soreness in my chest over my heart - it seldom lasted more than 10-15 seconds.  It no longer seems to happen when I walk, but I do notice some if I use my upper body more. 
    My arms and chest are out of condition but I am regaining conditioning by doing 10-15 minutes of yoga and stretching each day.  I will add some weight lifting beginning tomorrow (Oct 20) to build upper body strength gradually.  I have done some house projects that required lifting enough to get a bit sore, but I am not ready to hammer re-bar in landscaping timbers or dig post holes yet.

At 7 weeks, I have not done weight lifting regularly, but my house projects and chores cause me to use my upper arms more and more.  Today I did 25 minutes of yoga stretches and poses that exercise the upper and lower body.  I walk 3 miles per day. 

In the last 10 days I have had two episodes of rapid heart beats which lasted an hour or two.  Both incidents coincided with drinking at least 16 ounces of southern style iced tea.  Since backing off on such jolts of caffeine I have not had a recurrence.

 Conclusions

So far I have not regretted the procedure and am optimistic that the odds of reverting to A-Fib are low but realize it could happen.  I would go back and have a second ablation if necessary.   It has taken me longer to get to this point of recovery than I had initially hoped, but I feel so much better than when I was in persistent A-Fib.  While in A-Fib I estimate I was at 50% of my pre-A-Fib condition and was moderately depressed for 3 months.  Now I estimate I am at 80+% of pre-A-Fib and the blahs are going away.  I feel feisty enough to argue with the insurance company over the statements and to check the hospital bills versus the statement.  You will find errors, so monitoring the hospital bills and insurance statements is essential.

Wesley Dukes
Email: dwdukes661@gmail.com



 

bullet Ablation for V-Tach (Ventricular Tachycardia) at Mass. General by Dr. Vivek Reddy---Coping with ICD Shock

    (Ryan Townsend is a firefighter/paramedic with V-Tach due to a special type of Cardiomyopathy in which the septum between his ventricles is very thick. He nearly died from Sudden Cardiac Death when he was 30 years old, and had to have an ICD (Implantable Cardioverter-Defibrillator) installed. The shocks saved his life, but were hard to put up with. The ablation procedure he experienced is similar to that for A-Fib. [It's been suggested that A-Fib.com should investigate and write about V-Tach, since it is so similar to A-Fib and is often treated by the same doctors.] )
 
   I had an ablation performed at Mass General in Boston, MA by Dr. Vivek Reddy. The procedure that was performed on 4/25/08 was not viewed by my specialists down in Miami as very promising; however, it was worth a shot. They were skeptical due to the type of Cardiomyopathy that I have which basically is that my septum is very thick between the ventricles, and that my particular ventricular tachycardia "VT" was too fast. The last two EP studies revealed a VT that was too fast to map because it did not support a blood pressure and did not allow enough time to see the problematic circuits. I had tried several med which didn't work
    Well I pressed on. I researched through the internet, Google, and other patients that have had successful ablations. The most important thing I did is put it in God's hands, and let him guide me to the answer to my prayers.

EXPLORING OPTIONS WITH DR. REDDY
    I felt pretty confident despite the negative outlook I received from my doctors and found myself in Boston. I went in for my consultation and was told the many different ways my problem can be ablated. They use radio frequency, cryoablation (freezing), or an alcohol injection in your coronary arteries that is basically a controlled heart attack which kills the muscle where the bad circuit lives. All these methods are typically done through the groin vessels. Another approach is to pierce the skin above the sternum allowing access to the sac surrounding your heart through which the doctors can introduce their instruments and ablate circuits on the surface of the heart if necessary. This is known as the percutaneous (through the skin) approach which is not done by your "average" EP doctor. I'm not sure how many doctors practice this particular procedure; but after researching on the internet, it seems to be very few.

ABLATING THE V-TACH
    My ablation lasted 10 hours. I woke up and heard the wonderful news that it went extremely well. I was in pain, but it was tolerable and extremely worth it. My heart had a total of 8 circuits which could cause VT, two of which were extremely active causing me to get defibrillated or "shocked". Four to five hours of the procedure consisted of mapping the heart and finding the problems. They used a balloon pump to keep my blood pressure up while VT was induced, which is typically used in Open Heart operations.
    They ablated with radio frequencies and hit one of the worst ones on the surface of the heart by the percutaneous (through the skin) approach.
The outcome, according to Dr. Reddy, was an 8 out of 10. There were two circuits deep in the ventricular septum which they left alone, because they believed they were not of significance. And they did not want to damage any more of the heart then needed. I later read the procedure summary in which there was also a notation stating that the coronary vessel supplying the area was not easily identified. This meant that Dr. Reddy was considering an alcohol injection; however, he was not certain about the outcome.

AFTER THE ABLATION
    The first week and a half I felt pain in my groin. I also had some chest discomfort the first few days. It became worse as the Madrol, a corticosteroid used for inflammation, was stopped. I was extremely uncomfortable. I tried my best to "deal with it," however I couldn't handle it any longer. I knew it was pain from the burn on the surface of the heart and not a heart attack. The doctor then put me on the Madrol again. This time instead of a few days, I was on it for a month.

LIFE AFTER V-TACK
    Do I feel a difference? Yes, absolutely. Before this I could barely walk at a normal pace without feeling dizzy. This is my second miracle! (My first miracle was surviving a cardiac arrest when I was 30. No personal history to explain it. I was in top physical condition. I survived because of 10 minutes of CPR provided by my best friend until EMS arrived. I read somewhere that only 10% survive sudden cardiac death.)
    Before this in December of 2007 an ICD device had been inserted in my heart which shocked me an average of once a month to get me out of a V-Tech attack. Once it shocked me 28 times in 14 minutes. An ICD shock feels like a kick in the chest. The worst part of the whole thing is feeling your heart start to go crazy and anticipating the shock. It beats dying. But going through a V-Tach storm is like being on the edge of life. All I can say it was the worst experience of my life. Now my life is totally changed.
    Almost two months have passed. My activity level has been much better. The PVCs were quite frequent at the beginning but have decreased once I passed the 1 month mark. Just recently while recovering from a chest cold, I became extremely flush and my right arm went numb. I decided to get checked out at the hospital; however, it had diminished by the time I was evaluated. Was it an anxiety attack from a short run of V tach? I don't know. All I could tell you is that I felt that same way right before I used to get shocked. According to what I've read on ablations, it can take months to a year before the PVCs calm down and in some cases even disappear.
    Over the past 6 months I had spent 35 days in the hospital with 7 invasive procedures and 7 noninvasive procedures and who knows how many doctor visits. I had been shocked 4 times. Once I was shocked multiple times, as i mentioned earlier. I have 4 cardiologists caring for me now.

CONCLUSION
    This story is my testimony that God is real and he listens to his children's prayers. I never lost faith in all of this. And I pray that if you are in the shadows of fear, call on the name of the Lord to give you the light of hope.
    I have learned a lot about ablation and medication options. Please look into getting your arrhythmia fixed. Devices are a "God send." However, ablation can CURE the problem for many people. At the very least, it will decrease or even eliminate future shocks. I pray for the day that ablation eliminates the need for ICD therapy.
    I hope this finds patients, family or friends of ICD patient's well and full of hope.
    Contact me with any questions. I will help you find whatever I can with the resources that are available to me.
God Bless
Ryan Townsend
Lieutenant/Paramedic 6 years
E-mail: ryanmtown(at)hotmail.com (the "@" is written as "at" to prevent access by spam)

 
bullet

Hopefully a CryoCor Success

    I am a 44 year old male who has been managing A-Fib for 4 years via Sotalol and Coumadin.  Some doctors have told me that Coumadin is not necessary since my heart is otherwise healthy.  However, I chose to play it safe, since my father died from A-Fib at age 66. It was his first known episode. He came back early from traveling through Europe because "he didn't feel like himself".  He saw a doctor who prescribed drugs including Coumadin.  He suffered a stroke that evening. 
    In recent years, my episodes have become more frequent, occurring every two months on average and lasting between half a day and 9 days.  I have always been able to return to normal sinus rhythm on my own.  I reached a max dose of Sotalol (240 mg twice a day), so it was now time to pursue a fix.
    I chose CryoCor because I think it is safer and should be as effective. I feel I owe it to my wife and three young children to take the safest route.  I live near Albany NY and regularly travel 3 &1/2 hours to the University of Rochester, NY to participate in the FDA Clinical Trial. I was very comfortable meeting Dr. Daubert. I was randomly placed in the "control" group and had to wait to "cross over" into treatment.
    After 7 months, I qualified to cross over and I had my CryoCor ablation on 10/8/07. The procedure lasted 6 hours.  Unfortunately, I had a complication at the very end and I had to be admitted for a few days.  Somehow, a small hole formed that allowed blood to leave the heart and fill the sack that surrounds the heart.  Fortunately, they were able to remove the blood from the sack before the sack became completely full and stopped the heart.  The hole healed on its own. 
    I continued antibiotics for 14 days to ensure that an infection did not occur.  While recovering from the complication, I slipped into A-Fib and was not able to restart Coumadin for 2 weeks to ensure that the hole was fully healed.  My QTc was longer than desired, so no Sotalol was prescribed, just Toprol.  This was a very stressful time, being in A-Fib without Coumadin. 
    (The QT interval represents points on the EKG signal. The "c" stands for "corrected," which means it is adjusted for heart rate. The QT interval is affected by the heart rate.)
    A week after restarting the Coumadin and going back on a low dosage (120 mg twice a day) of Sotalol, I went back into NSR.  It had been a very difficult three weeks, but life was now good again!
    I have been in NSR since then (4 months now).  We have decreased the Sotalol dosage to 80 mg twice a day for the last month.  Today is my last day of Sotalol.  Hopefully I will be able to maintain NSR without any Sotalol.  If I can't, I'll be going back to Dr. Daubert for Round 2.  Despite the complication, I am very happy with the wonderful care I received from Dr. Daubert and Strong Memorial Hospital.  I have no regrets. Eventually, I will be cured of A-Fib and off of Sotalol and Coumadin. 
    Good luck to everyone and a special thanks to Steve and his website for helping so many.
Ted
E-mail: TedAF(at)nycap.rr.com (The "@" is written at "at" to avoid access by automated spam mailings)

    (Update from Ted June 9, 2008): Twice I have stopped the low dosage of sotalol but I had flutter and fib problems so I am back on it.  Although I am vastly improved, I am not fully cured.  I will have a second CryoCor ablation in August.

 

bullet Two Different "Pill-In-he-Pocket" Approaches---Both Turn to Catheter Ablation for a Cure

    (Here are the stories of two different uses of the "Pill-In-The-Pocket." Marilyn from the US is in magenta. Leon from Australia is in brown.) See also: Pill-In-The-Pocket.
    (Marilyn wrote to someone asking her for advice.)

My first bout of Atrial Fib was in 2002.  I consulted with Dr. Fred Morady, a renowned University of Michigan Cardiologist/Electrophysiologist.  He recommended a Pulmonary Vein Ablation.  The procedure was in its infancy, and I would not consider it.  He suggested I carry medication with me and take it when A-Fib occurred.  Each time I went into A-Fib and/or A-Flutter, I could really feel it.  The medications are: Inderal, 20 mg; Rythmol, 300 mg at onset of A-Fib.  Repeat Inderal in 3 hours if A-Fib persists.  Wait 3 hours and repeat Inderal and Rythmol.

About 2 years later, I went to see another Cardiologist/ Electrophysiologist, Dr. David Haines, at William Beaumont Hospital in Royal Oak, Michigan.  He came to Beaumont Hospital from the University of Virginia, and his specialty is Atrial Fib. He also suggested a Pulmonary Vein Ablation. I felt my "Pills-In-The-Pocket" were working, and there was no pressure from Dr. Haines to proceed with the ablation. The A-Fib episodes, however, were happening more and more frequently and lasting longer. Also, I am 67 years old; and all the literature says someone my age should be on Coumadin (a blood thinner), since Atrial Fib predisposes you to strokes. I really resisted that.
 
This past September when we were traveling in the Southwest, the pills did not work. I ended up in the E.R. in Bullhead City, AZ.  During the doctor's admitting assessment, he said I went into a normal rhythm; and I was discharged with a copy of my EKG. At my next appointment with Dr. Haines, I presented the discharge EKG to him. He asked me if I was extremely tired during this trip, as the discharge EKG showed a subtle Atrial Flutter.  I knew then I needed to proceed with the Pulmonary Vein Ablation. The "Pill-In-The-Pocket" served me well for five years; however, it was time to go for the cure.

I had a Pulmonary Vein Ablation performed by Dr. Haines on November 26th, 2007.  I am six months post procedure, and it looks like it was successful. I wore an events monitor the month of February, and there were no bouts of A-Fib or A-Flutter recorded.   I had a Pulmonary Vein C.T. scan performed about 2 weeks ago looking for narrowing of the pulmonary arteries, and there was none. I just had a total knee replacement with NO A-FIB!!

The Pulmonary Vein Ablation procedure was about five hours, and general anesthesia was used. I spent the night in the hospital and went home the next day. I felt extremely tired after the procedure; however, I think it was the anesthesia. I am not a fan of general anesthesia. I obtained a copy of the Pulmonary Vein Ablation dictated report and now understand how important it was to use the anesthesia, to have a patient comfortable and to be able to control all movements. There were no limitations post procedure, and I was on Coumadin for three months. I am presently on no medication except for a daily aspirin.

If you decide to go for a Pulmonary Vein Ablation, make certain you pick a Cardiologist/Electrophysiologist who has performed many Pulmonary Vein Ablations. Ask many questions---first and foremost  "How many Pulmonary Vein Ablations have you performed (the key words here are PULMONARY VEIN ABLATIONS)?  What is your success rate?  Have you had any complications?  How long will this take?" Make a list. I also strongly suggest you pick a Cardiologist/Electrophysiologist from the list provided on this A-Fib site.

If you have any questions or would like additional information, please contact me.

Marilyn, E-mail: rmshook(at)sbcglobat.net (The "@" is written as "at" to prevent access by spam mailing lists.) 

    Here is Leon from Australia's story. He also is responding to someone who wrote him for advice.)

    I have had a fair amount of experience with A-Fib, starting in 1989. I am not sure where you live, but I will run you through what I know. I am an Australian, and perhaps you are from O/S; so to save you an overseas call, I will give you a brief run down on my pill-in-the-pocket experience.
    I am at this time A-Fib free, having had 3 PVI operations. The first two were disasters. Fortunately I found a very experienced and capable guy in Sydney; and it appears at this time, 4 months later, that all is going well. I am A-Fib free and medication free which is wonderful, so I know what you are talking about when you say you want to get off your medication.
    First, I am not in a position to tell you how you should be treated. I can only give you my personal experiences. After having A-Fib for some time it became more frequent, and I was getting desperate to find some kind of assistance to help me get over it. Normally I would go into A-Fib for between 12 to 40 hours, unless I was hospitalized, which I hated. Then it usually turned into 4 days in hospital under observation.
    I don't know what kind of meds you are on, but some can be very dangerous. At one point mine was causing thyroid damage. Fortunately we found out in time, and it wasn't beyond treatment and cure. Many can be. You must have regular blood tests yourself. Perhaps you already are...I don't know.
    Anyway a year or so ago I was in Germany and had an A-Fib episode. I was referred to a Cardiac Specialist there. He informed me about the pill-in-the-pocket treatment. I was at the time taking "Atenolol", having being placed on that because the "Amiodarone" I was taking created thyroid problems. The Specialist in Germany suggested that when I have an A-Fib episode, I should take three 100 mg of flecainide (pill-in-the-pocket) spread over 60 minutes (20 minute intervals). I continued with my Atenolol; but the next time I had an A-Fib episode, I did as he advised. Within 2 hours I had recovered. It felt like a miracle, as I had been used to the recovery times I mentioned above. And with my heart recovering so quickly, the rest of my body recovered quickly as well, almost as if nothing had happened. So, in my own case, I couldn't have been happier with the "Pill-in-the-Pocket."
    However, every person can respond differently to drugs. So you have to feel your way with such a treatment. For those with heart disease, I understand flecainide is not recommended. But fortunately I have no heart disease, and I hope you are the same.
    On returning to Australia, I found no one here (that I could locate) using the "Pill-in-the-Pocket" treatment. Fortunately my GP said he was prepared to prescribe it for me as I already had had the experience of using it.
    Still I was after a cure and not a treatment. So, I researched Cardiologists in Australia and found, as I mentioned, the best guy in Australia in Sydney and went for my third operation.
    I didn't try to get by just by using the "Pill-in-the-Pocket" treatment prior to my operation, as my A-Fib was too frequent. I needed some kind of constant medication along with the "Pill-in-the-Pocket" treatment to get me by.
    I have tried to be brief; however, if you have any specific questions, I am only to happy to answer what I can from my own experience.
Kind regards
Leon, E-mail: sandman_oz(at)yahoo.com (the "@" is written as "at" to prevent access by spam mailing lists.) 
 
bullet It Takes Three Ablations---Dealing with The "Paralysis of Analysis" that A-Fib Patients often Face. Faith and A-Fib.
 

My Experience with Atrial Fibrillation

by Lou Aiello

    Like so many others who have shared their experiences, I have found the experience of A-Fib to be life altering in many ways. While A-Fib presented a variety of challenges, it also provided an opportunity to learn of the kindness of others. I am particularly indebted to Steve Ryan for this amazing web site, but also for the many words of encouragement and insight that he provided to me during my journey in dealing with A-Fib.

    I was initially diagnosed with A-Fib in May of 2006. I had experienced a particularly stressful week at work and was trying to enjoy the weekend respite. On Sunday I began to mow the lawn with the mindset that I would go fast to finish sooner than usual. However, I quickly noticed that I was becoming unusually tired and took a break. When I returned to the mowing, I quickly became tired again. I took my pulse and noticed that it was not an even beat, but was beating irregularly. Although I had been diagnosed with PAC’s, I had never experienced a heart beat like this. Since my daughter is a medical assistant, I asked her to check my pulse. She confirmed that it was not a normal heart beat.

    My wife and I drove to Hershey Medical Center which was only a short drive from our home. When I arrived, they performed an EKG, which verified that I had an irregular heart beat. They put me on an IV drip of a drug designed to restore the heart rate, but also scheduled me for a Cardioversion the next day in case it didn’t work. The next morning, I was still in A-Fib, and I was just beginning to learn what the term Atrial Fibrillation meant. Thankfully, my heart rate returned to normal that morning.

    At the hospital, I was told to avoid caffeine and to take Flecainide twice a day. Since they had given me blood thinners during my stay at the hospital, I asked when they could be discontinued. It came as an incredible shock to learn that I would need to stay on Coumadin indefinitely. At this point, the true gravity of the situation became quite real.

LEARNING ABOUT A-FIB

    I desperately began to learn everything I could about Atrial Fibrillation and buried myself in the internet. As I learned more about the condition, I also learned more about the possible treatments. I was disturbed and confused about the outlook regarding medications to hold the A-Fib at bay. Flecainide was said to have an effective percentage of approximately 50 percent, which I did not find reassuring. I was also confused about how to interpret the meaning of 50 percent. Did that mean that Flecainide was effective in 50 percent of patients or did it mean that patients experienced 50 percent fewer episodes? My experience made this a moot point, as I continued to have A-Fib episodes. However, the Flecainide was proving to be effective in limiting the duration of the A-Fib events, at least initially, to around an hour.

    Around this time, I began to learn more about catheter ablation. I also discovered this web site, which proved to be an amazing resource of information regarding the disease and treatment options. I went from feeling that I had a life sentence of A-Fib to feeling that a cure might be possible via catheter ablation.
    As I continued my education, I experienced what perhaps many have experienced. I soon was affected by paralysis of analysis and often went from hopeful to fearful with each new piece of information. At these points (this occurred several times), I found that personal dialogue with knowledgeable people helped to provide a more balanced understanding. This occurred when I put these questions to Steve Ryan as well as to the doctors and nurses at Johns Hopkins and Hershey Medical Center. Information alone is one thing, but a continuing dialogue with real people helped me immensely in this regard. Their kindness and expertise went a long way in helping me deal with this condition. Another thing which helped was realizing at some point that there is an element of faith in moving forward. This is hard, because we all like to be in control; but putting this in God's hands and in the people who are providing the care is invaluable in moving forward.

    I asked my cardiologist about having a catheter ablation. While I was ready to jump head first into this procedure, he was much more conservative and encouraged me to give the medications a chance first. I was somewhat frustrated, although I now understand and appreciate his rational. After much thought and prayer, I decided to begin the search for a doctor who performed such procedures. This web site was very helpful, and I soon had a top three list of doctors who were well respected for their skill and expertise. Those three included Dr. Marchlinski at the University of Pennsylvania, Dr. Calkins at Johns Hopkins and Dr. Natale at the Cleveland Clinic. I was particularly interested in doctors with the most experience and the best success rates.

During an emotional down period with multiple concerns about this conditions, I contacted the Arrhythmia hot line service at Johns Hopkins. I spoke with a wonderful person named Pat Adams, who provided me with more information about A-Fib as well as some information about Johns Hopkins treatment of A-Fib. Pat also suggested that I speak with Valerie Barron, the nurse case manager of Electrophysiology. She provided information about my condition like no other person had done before. I asked a ton of questions, and she provided a wonderfully balanced understanding of my condition. Although my condition remained, I felt like a burden had lifted.

MEETING WITH DR. CALKINS AT JOHNS HOPKINS

    The next step was a consultation with Dr. Calkins at Johns Hopkins in September. Incredibly, Dr. Calkins spent the first several minutes getting to know me, asking me about my work and learning more about me as a person. He then provided a very realistic picture of A-Fib and catheter ablation. I quickly learned that Dr. Calkins does an outstanding job of helping patients understand their options and make their own informed choices. Since I was only recently diagnosed with A-Fib, I left with the sense that catheter ablation was a serious option, but also that I had time to consider and see how things developed.

    I discussed this with Dr. Naccarelli, my cardiologist at Hershey Medical Center. We discussed my visit with Dr. Calkins, and he again encouraged me to give this some time and changed the dosage of my medication. After several weeks, it was becoming clear that this A-Fib thing was not going to respond very well to this particular medication.  In light of this, Dr. Naccarelli advised that a catheter ablation may possibly be in order. He also advised that Hershey Medical Center had recently hired Dr. Gonzales, who specialized in this procedure. Since this was in a nearby town, I felt that it made sense to meet with Dr. Gonzales as well. I felt comfortable discussing my condition with him and asked many of the questions suggested on this web site. He was quite knowledgeable regarding A-Fib and in fact held similar views as Dr. Calkins. After this, I had a decision to make.

    It was tempting to go with the closest hospital for the procedure (since Johns Hopkins is about 1-1/2 hours away and Hershey Med Center is only a few short minutes). I was initially unsure, but after praying about it, I felt a peace about going with Dr. Calkins despite the extra traveling distance. I believe it was early December when my ablation was officially scheduled for January 30th, 2007.

    As the days went by, any doubts about having this procedure were removed by worsening A-Fib episodes. The incidents occurred more frequently and also lasted longer as time went on. Valerie Barron, the electrophysiology coordinator at Johns Hopkins, was helpful as always by helping me understand my condition as well as manage changes in medications.

CATHETER ABLATION AT JOHNS HOPKINS

    Finally, the day arrived for my wife and I to travel to Johns Hopkins. Prior to most ablations, it is typically necessary to have a TEE as well as a CT scan performed prior to the ablation. These were performed the day before the procedure on an outpatient basis. I can’t say enough regarding the kindness and expertise of the various health care providers.

    The morning of the ablation arrived, and my wife and I walked from our place of housing to the hospital at around 6:00 AM. Everything went according to schedule, and I soon found myself saying goodbye to my wife as they wheeled me to the electrophysiology lab for the ablation. Although I was a bit nervous, I mostly felt a sense of peace, knowing that many were praying for me and also seeing the cast of professionals who were so highly qualified to perform this procedure. It was also reassuring to have my wife, Ruth, with me during this stay. Her kindness and strength made such a difference.

    After a 5-1/2 hour procedure, I woke up in the recovery room. My heart was beating in a normal sinus rhythm. I enjoyed a light lunch and was moved to my  room for an overnight stay. Everything went well, and I was told that I may experience some arrhythmias over the next few months as my heart healed. I also experienced some slight pain in my chest, due to the burning that is performed in an ablation.

    I was released the next day. It felt good to be in normal sinus rhythm, despite catching a cold in the days leading up to the procedure. Over the next several weeks, I used the portable EKG device that I was given as part of a research study. It was an impressive piece of equipment that allowed me to easily check my heart rhythm each day. I had a few bouts of irregular beats, but they quickly reverted to normal. At this point, I was confident that I was moving in the right direction and anticipated improvement as my heart continued to heal from the ablation.

    Unfortunately, after several weeks I began to develop episodes of Atrial Flutter. I wasn’t too concerned initially, but the episodes soon began to last longer. Around this time, I had a one month follow-up visit with Dr. Calkins.

The events surrounding this appointment were truly extraordinary. As a Christian, I have tried to seek God’s guidance through life’s various twists and turns. However, I am not the kind of person who typically seeks guidance through signs and wonders. So I found the following experience to be quite profound. A week or so before my 1 month appointment, I had a vivid dream about a visit to Johns Hopkins. In this dream, I had traveled to Johns Hopkins for a routine office visit. Instead of experiencing a routine exam, however, I soon found myself in a hospital bed. As I lay in the bed, I awoke to see catheters being removed from my upper leg region. I was told that another ablation had been performed.  

SECOND ABLATION---FOR ATRIAL FLUTTER

    A few weeks later, my wife and I traveled to Baltimore for my scheduled one month follow-up exam with Dr. Calkins. We arrived early, and my wife had an early lunch in the cafeteria. For my appointment, I received an EKG (which showed continued Atrial Flutter) and soon was greeted by Dr. Calkins in his office. He told us that the EKG suggested that the Flutter could be caused by activity on the right atrium (which had not been the subject of my first ablation).
    He gave us 3 options to consider, one of which was Right Atrium Flutter Ablation. The others involved changes in medications, but they did not seem as promising. When we said that we would rather have the ablation, Dr. Calkins confirmed that he also felt that this was the best option. He then said that it was unfortunate that we would have to travel all the way back to Hershey and then return at a later date. He then gave a look that suggested that another idea had crossed his mind. He asked if I had eaten that morning and I stated that I had not (despite the fact that I normally eat breakfast). The next thing I knew, Dr. Calkins was having the schedule checked for the possibility of squeezing me in for an ablation that very day. He returned to his office and advised that one of his associates would be able to perform the procedure the same day. As this plan materialized, I couldn’t help but recall my vivid dream of a few weeks prior. The events had transpired exactly as shown in my dream!

    Not only did Dr. Calkins arrange for everything, he also personally walked us from his office in the physicians' wing all the way through winding corridors to the hospital wing. As we sat in the waiting room, we were in awe of how things had transpired and appreciative of Dr. Calkins' kindness.

    (Editor's Note: A right Atrium A-Flutter ablation is generally easier and simpler than a left Atrium Pulmonary Vein Ablation. The ablation catheter does not have to be passed through the Transseptal wall separating the right and left Atria. A full left and right Atria ablation could not be performed at this time, because it had only been one month since Mr. Aiello's first PVA.)

    The ablation was performed on the right atrium, and I awoke in normal sinus rhythm. I appeared that my battle with A-Fib was over. However, a few days later I began to have more episodes of Atrial Flutter. They became more persistent as time went on, and it became necessary to have a cardioversion to restore my heart to a normal rhythm. Although a cardioversion is not usually curative, it was hoped that this could provide the extra push to help my heart remain in a normal rhythm. Sadly, this did not occur, and it became necessary to go on Amiodarone. This was not a happy day, as I had always had concerns about going on this medication.  

    Over the next few months, I needed to have two more cardioversions, one at Johns Hopkins and the other at Hershey Medical Center. During this time, I had appointments with both Dr. Naccarelli at Hershey Medical Center and Dr. Calkins at Johns Hopkins. I was impressed with how well these two doctors communicated with each other regarding my condition. It was so reassuring to know that both of these men were consulting with each other after all of my check-ups in an effort to address my condition.

    By early May 2007, it became clear that another ablation procedure would be necessary. Dr. Calkins felt that it was important to have another procedure sooner rather than later. Because there was a longer wait time for Dr. Calkins, he offered to refer the procedure to one of his colleagues. But promised to arrange the schedule so that he would available for any problems that might arise.

    As I awaited a specific date for the procedure, I continued to deal with atrial flutter and was feeling quite stressed out with everything. During a routine trip to my chiropractor, I ran into some friends who were incredibly supportive. They all gathered together to say a prayer for me, and I felt encouraged by their prayers and support. Having A-Fib can be discouraging, but it was good to be reminded that God hadn’t forgot about me.

    A day or two later, I received a call from Dr. Calkins' case manager Valerie Barron. She told me that Dr. Calkins decided to forgo one of his days off to perform the procedure himself. She said that he mentioned that I had gone through enough already and that he wanted to do this for me. My wife and I were so appreciative of Dr. Calkins' kindness and also thankful to God for answered prayer. The date was set for June 7th, and I looked forward to that day with great anticipation. The only change from the previously scheduled procedures was that I would be under general anesthesia this time, due to some breathing difficulties with the sedative used in the earlier procedures.

THIRD ABLATION (SECOND PULMONARY VEIN ABLATION)

    My wife and left for Baltimore on June 6th, the day before the procedure. Finally, the morning of June 7th came along, and we arrived at the hospital at around 6:00 AM for the CT scan and preparation for the ablation procedure. Once again, everyone at Johns Hopkins was wonderful in both their professionalism and in the care they showed to me and my wife. Finally after all the waiting, they wheeled me to the electrophysiology lab, and I said goodbye to my wife.

    After the 5-1/2 hour procedure, I awoke in the recovery room. My memory is usually a bit fuzzy after this type of procedure, but I remember that my wife was there and I remember speaking with one of the attending physicians. Everyone seemed very optimistic about the success of the procedure. I was moved to my overnight room, and Dr. Calkins spoke with me and my wife about the procedure. He was very positive about the results and explained the steps that were taken during the procedure. If I recall correctly, he told us that they located and ablated some specific areas that were showing as hot spots for existing electrical activity. They also re-ablated all of the lines from the prior PVI and then ablated various “potentials” that were discovered during this time.
    (Editor's Note: The O.R. [Operating Room] report indicated that some of Mr. Aiello's A-Flutter may have come from gaps in the previous PVI ablation lines. Most current PVI procedures leave gaps, but they usually are filled in as the heart heals. Mr. Aiello needed a touch-up ablation to fill in these gaps and ablate other areas of the heart with A-Fib potentials.)

IN SINUS RHYTHM, BUT POST-ABLATION SCARE

    I was released from the hospital the following day in normal sinus rhythm and hoped for the best. I felt fine, although I noticed some swelling in my legs and began go have some rattling sounds when I breathed. To be on the safe side, I went to my local hospital’s ER and was given a chest x-ray. They discussed fluid in my lungs and discussed the possibility of congestive heart failure, which I found to be particularly devastating. They put me on a diuretic and advised that they would be sending a report to Johns Hopkins. Early the next day, Dr. Calkins called me on his cell phone on his way to the hospital. He put my mind at ease with more details concerning these medical issues. Although I knew that they used a lot of fluid to deal with the heat used in this procedure, I didn’t fully realize that it was an amount of fluid that could occasionally cause swelling in the legs and fluid in the lungs. I felt so much better after Dr. Calkins' explanation and looked forward to continued recovery. It seemed like A-Fib was acting like the month of March in that it was going out like a lion.

    I had a follow-up visit with my local cardiologist a week later, and I was pleased that he dropped the beta blocker. About a month later, I was taken off the Amiodarone per Dr. Calkins' instructions.

    By the time my three month check-up with Dr. Calkins came around, I had not experienced any A-Fib or A-Flutter to my knowledge. I had an EKG at this check-up which also showed normal. Dr. Calkins was very pleased that I had not had any episodes and advised that I no longer had to take any medications for A-Fib and would only need to remain on blood pressure medication. I was thrilled with the news and took the opportunity to express my appreciation to Dr. Calkins for using his talents to help me.

    Five months later, I had another appointment with Dr. Naccarelli, my cardiologist in Hershey, PA.  I was happy to tell him that I had not had any recurrences of A-Fib or A-Flutter since the ablation in June. After the examination, he gave me a good report that was in line with Dr. Calkins' report during my three month check-up. He advised that I would not need to see him for another year.

CONCLUSIONS

    This experience has focused my attention on my overall heart health, as there is some history of heart issues in my family. As a result, I am taking steps to eat a heart healthy diet, take supplements, get regular exercise and try to deal with stress more effectively. Dealing with stress is probably the most difficult area, and I continue to try to learn better ways to handle it. I still have periodic PAC’s, but otherwise things have continued to go well.

    Although this experience has been very difficult, it has also served to expose me to some of the most wonderful people in the world. There have been so many times that I have been encouraged by Steve Ryan, who patiently answered my many questions and provided helpful information and reassurance. I have also been blessed by an incredible cast of professionals who have dedicated their talents and efforts toward helping others, including Dr. Calkins, Dr. Naccarelli, and Valerie Barron. My wife, Ruth, has been a constant source of strength and compassion in dealing with this condition, and having her with me at Johns Hopkins meant so much to me. Most importantly, I thank God for all of these individuals and ultimately for His healing touch.
Lou
E-mail: aiellol(at)mhs-pa.org (the "@" is written as "at" to prevent access by automated spam mailing lists)

    In a later E-mail Lou writes: "I am happy to report that I am still in normal sinus rhythm which is almost one year since my last ablation by Dr. Calkins at Johns Hopkins. It is a wonderful feeling to have a normal heart beat each day, and it makes me count my blessings."

bullet What It Feels Like to Have a PVI at the Un. of Pennsylvania

    My name is Mark, and the following is my story regarding A-Fib.  In 2004 I started getting occasional irregular heartbeats when I was running, and my doctors weren't sure of the origin of the problem.  I was in my mid 40's and in very good health.  I took a series of tests such as stress tests which showed my heart to be in excellent shape. 
    I was going through a stressful period in my life, so I assumed that these episodes were from anxiety.  Unfortunately, I started to get irregular heart beats over the next 3 years and had 5 different A-Fib episodes where I needed to go to the emergency room.  Thankfully they lasted only 7-8 hours, so no cardioversion was required. 
    During this time period I tried beta blockers and rythmol to address the arrhythmia.  While these drugs were helpful, they really affected the quality of my life.  Beta blockers made me tired and were detrimental to my sleep.  Rythmol worked well for a while, but I soon needed to increase the dosage and was affected by fatigue. 
    I was starting to feel very down as my active life was becoming very sedentary. Even climbing stairs was an anxiety provoking event.
 
Choosing a PVI and the Un. of Pennsylvania
    I researched various options particularly Steve's website (A-Fib.com) and spoke with my cardiologist.  I decided that I was going to have a Cardiac (PVI) ablation.  I  did a tremendous amount of research of the medical literature and felt the benefits of an ablation outweighed the risks. 
    My next challenge was finding the right hospital to go to in the New York/Philadelphia metropolitan area.   In the end, it was an easy choice for me as I was so impressed with the University of Pennsylvania.....not only their success statistics but their people, the simplicity of their induction process, etc.  I went over to the hospital and met with Dr. Callans and his team. They discussed the procedure with me in great detail.  I was incredibly impressed by Dr. Callans not only because of  his knowledge and experience but also his empathy and honesty.
 
The PVI Procedure
    I waited 6 long months and finally arrived at the Un.  of PA for the ablation procedure (April 2, 2008).  When I arrived, I met everyone who was going to be participating in the ablation.  They were so professional and supportive which helped my nerves considerably.  It's very scary to think that you will be lying flat during this procedure for 6 hours and remain fairly still....then stay still another 6 hours after until your blood thickens.  The hardest part for me psychologically was that, because the procedure was 6 hours, a urinary catheter is needed....not painful, but....well I think you get the idea...
    The pain/relaxation medicines were wonderful, so I was relaxed fairly early. (Mark was lightly sedated rather than given general anesthesia which usually renders a patient completely unconscious.)  Then they put the catheters inside my groin.....one on the left side and the other in the right. I didn't find that painful, nor the Novocain-like medicine sting.  I felt awake during the whole event, although my doctors told me that I was sleeping at certain times. At other times I was more lucid.....it was almost like hearing voices but having your eyes closed.
    There were only two events where I was a little anxious.
    1. They speed up your heart to trigger electric impulses....you feel your heart moving. That was a little scary, but the staff talked me through it each time. And the acceleration of the beats was for very short time periods. 
    2. Also occasionally you feel the burns....sort of a mild discomfort. They will increase the medication if you ask.
    The whole procedure took about 5 hours.  I was very impressed with the team.  Afterwards, lying still was fine. The harder part was stopping the bleeding from the catheters, but eventually that happened.
 
After the PVI
    The next day, I was very sore from the catheters in my groin and had black and blue marks over parts of my lower extremities. My chest was also a little sore, and I was tired and grumpy.  You come off a high from the procedure, and then you start to realize that now you need to recover which makes you feel uncomfortable. 
    The great news was that my heart was in perfect rhythm, and I felt so much better than when I entered the hospital. 
    Over my 3 day stay, the nursing staff was excellent.  However, I would make the point that you don't just walk out from an ablation and immediately resume your life (despite the articles and brochures). It's a major procedure. You're sore, you are taking coumadin, you have many blood tests. I had a little nausea and was still taking rythmol, etc. So, my view is that you need to be psychologically ready to accept that you will feel better over time. Your heart needs time to heal.
    That said, I'm so happy that I did this procedure. Today I took a walk, and what a joy to feel energetic and hopeful again. The team at the Un. of PA was wonderful. I would wholeheartedly recommend them for anyone considering an ablation.
Mark
E-mail: mlj324(at)yahoo.com (The "@" is written as "at" to prevent access by automated spam search engines.)
    July 30, 2008 Mark provided this update: "The ablation was a total success.  After about 2 to 3 months of having a few irregular beats, heart beats regularly. Able to run and really do any physical activity. Very fortunate and very happy. Have had no complications."
 
bullet Successful PVA(I) but Still on Meds
    (Editor's Note: Bill's experience is important, because it shows that a Pulmonary Vein Ablation (Isolation) procedure can be a success for an A-Fib patient even though one still has to take an antiarrhythmic med like Tikosyn.)

    Thank you for jogging my memory that I had agreed to tell about my battle with A-Fib in hopes it would be helpful to others. Calling it a "battle" in my case may not be accurate in that the only symptom I experienced was tiredness which could be attributed to my age, and that I am about 20 lbs. overweight. I am told that I will always have this type of heart disease; but it is under control and I live, for a 88 year old male, a fairly normal life. The fact that I do tire when participating in rigorous physical activities could be due to conditioning which I am working on. For the last two months I participate four evenings each week for one hour high impact aerobics. Also, I ride my exercise bike for an hour each day. I am determined to loose that weight and improve my stamina.

    My advice to anyone who has been diagnosed with A-Fib is to attack it aggressively. I lived with the symptoms over twelve years before considering PVA. The reason being that the only symptom I had was a recurring tired feeling. Finding A-Fib.com on the Internet and taking your advice, I arranged to go to the Penn Presbyterian Medical Center. My attending physician was Dr. Edward P. Gerstenfeld of the Un. of Pennsylvania. I can say, without reservation, Penn is all about being the best.
   

    My Pulmonary Vein Ablation (Isolation) was a painless procedure. I could hear Dr. Gerstenfeld talking with his associates while identifying and then mapping the areas that needed to be ablated. After the procedure when I was returned to my room, Dr. Gerstenfeld came in and said he thought they had found and ablated the areas that were responsible for my symptoms. I said, "I could hear you discussing the procedure the entire time." He smiled and said, "If that is so, why were you snoring at times?" He did say it may be necessary for me to return for what he called "a touch-up," but I left feeling good about the experience and the professionalism I experienced at Penn Medical Center.
    Before leaving Penn, I was cardioverted and referred to Dr. Robert Brewer at the Lexington Clinic. He prescribed 225 MG of Rythmol three times daily, but I went back into A-Fib. Dr. Brewer then prescribed 250 MG of TIKOSYN twice daily, cardioverted me once again; and for the past six months I have been in sinus rhythm.
    I over-exerted myself once with aerobics and I went into A-Fib. But within two days of taking it easy, I was once again back in sinus rhythm.
    I discussed this with Dr. Brewer, and he advised me to ease into aerobics. "Don't try to keep up with those 30 year old girls who have been doing aerobics for five to seven years." I went into the class saying, "Okay girls you can kick, I'll just kick higher and longer." You know that man thing, "Anything you can do I can do better." Dr. Brewer added that this indicates that TIKOSYN is doing what it should do---keep you in sinus rhythm.

    I am going to a class reunion in Florida the second week in March. I will be riding my Honda Rebel. If all goes well, I may go to Sturgis, South Dakota this summer for a big bike rally.
    I will be happy to answer any questions anyone has about my A-Fib history, and I thank you so very much for your good advice.
                            Regards,
                            Bill
                            E-mail: Justbillone (at) aol.com (the "@" is written as "at" to prevent access by spam mailing lists)

bullet From Nepal to Bordeaux---Treatment of Chronic A-Fib
 

I am writing this story about my mother’s long struggle with atrial fibrillation (A-Fib) and the treatment she received recently with two main purposes—first, to sincerely thank the creators of the A-Fib.com website, without which my mother would be living a miserable life with her persistent A-Fib; and second, to share our long  and torturous but learning experience with those suffering from this disease and their families, especially in our part of the world (Nepal) and give them hope that there is an effective treatment available, which many, including doctors, are unaware of.

My mother (Basundhara Tuladhar), currently 70 years of age, has been suffering from some sort of arrhythmia for more than 50 years. In those days, her arrhythmia was diagnosed as Paroxysmal Supraventricular Tachycardia (PSVT?). I question the diagnosis because I do not have the ECG copies to confirm with present day specialists. I remember from my childhood days the occasional and unpredictable SVT attacks she used to have, sometimes lasting for several days. We could see the right side of her neck and upper part of her chest pulsating rapidly; and as the episodes lasted longer, she became more and more symptomatic. Her physicians in those days were unable to do much to stop the SVT episodes. The medicines they prescribed such as Isoptin and Verapamil were ineffective. She therefore lived with her SVT in this manner more than 2 decades.

Then in 1974, our family physician prescribed her Amiodarone, which controlled her SVT very effectively, almost like a miracle. However, after taking this medication for about 12 years, she developed a blood disorder—sudden reduction of platelets (thrombocytopenia). Suspecting it as drug-induced, Amiodarone was substituted with other drugs such as Inderal, Sotalol, etc. none of which were as effective as Amiodarone. The arrhythmias still occurred unpredictably anytime and anywhere without any pre-warnings, creating a lot of anxiety and stress for her and the family as we would not know when these episodes would stop.   

Subsequently, since around 2002 my mother started experiencing some ‘modification’ of her arrhythmias, which started becoming more ‘silent,’ and the rapid palpitations could not be seen by an outside observer. However, she was still very symptomatic as before during such attacks. These events were diagnosed as A-Fib, and we were able to have these properly documented in an ECG.    

I was very disturbed by my mother’s illness since my childhood days. Therefore, as I grew up, I tried very hard to find a lasting treatment for my mother. We visited heart centers in India, Thailand, Japan and the UK, but the only advice we got was to continue with the medication. As a result, my mother and the family learned to live with her paroxysmal SVT/A-Fib as is. But on July 12, 2006, something unusual happened. She went into A-Fib as usual, which we expected to stop at some point as in the past. However, to our dismay, the A-Fib would not stop even after several days. Weeks passed, but it just would not stop. As this point, our cardiologist informed us that the A-Fib has set in permanently, which was difficult to believe. It was however true. Various cardiologists we consulted explained to us the treatment options—electrocardioversion, radiofrequency ablation, or accepting and learning to live with the permanent A-Fib. They were not too keen on electrocardioversion as they were sure about relapse in no time. They were also unsure about RF ablation as it is not available in our part of the world, and we would most probably have to go to some specialized centers in the US. They were also doubtful if RF ablation would be effective on my mother as her left atrium was dilated.  Therefore, their suggestion was for her to be on medication that would prevent stroke (warfarin) and control the heart rate (beta blocker) and ‘learn’ to live with the persistent A-Fib. This was difficult for my mother as well as the family to accept. While my mother could not simply imagine living with the A-Fib, I could not imagine putting her on warfarin long term given her Idiopathic Thrombocytopenia (ITP) complication.  This was the most dreadful nightmare we faced in my mother’s 50-plus years’ history of SVT/A-Fib.

I did not know what to do. All I knew was I had to find a way out.  I started researching extensively on my own, mostly on the internet. This was when I came across A-Fib.com which not only fully educated us on what A-Fib is all about but also gave us some encouragement and hope that there is a way out. I got the impression from this website that the A-Fib center in Bordeaux is one of the most experienced in the world and decided to take my mother there immediately.

However, my hope was soon dashed as the earliest appointment the Bordeaux hospital could offer us was almost a year later—May 2007 (I had contacted them in August 2006) because of a long waiting list. The hospital later advanced the appointment to February 2007 after my constant plea explaining my mother’s persistent A-Fib and the ITP complication. This was however still too far away for us given my mother’s condition.  While we gratefully accepted the February 2007 appointment, we continued to follow up with the hospital for an earlier appointment. Fortunately, a few weeks later, I received an email from the hospital advising that our appointment could be advanced to the end of October, 2006 because of a cancellation by another patient.  We were extremely delighted and accepted the appointment without any hesitation.

My mother continued to have persistent A-Fib, but we managed to take her to Bordeaux around October 20, 2006, a few days before her ablation appointment, to allow time for a transesophaegal echocardiogram (TEE) and other tests. To our relief, the TEE showed no clots and she was cleared to have the ablation on October 24, 2006. Dr. Haïssaguerre and Dr. Jaïs came to meet with us the day before in our room and explained the procedure. The next day, my mother was taken away for the procedure around 7:00 am and brought back to the room around 3:00 pm, in normal sinus rhythm for the first time in nearly 4 months!! We could not contain our joy and immediately called our family in Nepal to share the good news. 

Prof. Haïssaguerre and Dr. Jaïs later explained to us that the procedure was quite long (nearly 5 hours) and difficult given her chronic case. They had to ablate several locations of the heart tissue—the openings of all 4 pulmonary veins, mitral isthmus, left atrial roof, and the cavotricuspid isthmus. They were however very pleased with the outcome and the fact that electrocardioversion was not necessary to restore sinus rhythm.  The next few days of our stay in the hospital were uneventful, and my mother felt so much better for the first time since the onset of the persistent A-Fib nearly 4 months ago.

However, our euphoria was short-lived as my mother experienced several episodes of brief arrhythmias during our stay in a nearby hotel over the following weekend. As we returned to the hospital for a follow-up the following week, the episodes became more frequent and longer. Prof. Haïssaguerre was fortunately around to observe the episodes ‘live’ and on ECG. He explained that this was atrial tachycardia triggered by some very discrete points in the heart tissue and missed by the ablation procedure. He therefore decided to redo the procedure the next day to eliminate these points. The second procedure performed at the ostia of the left pulmonary vein was much simpler and shorter, and my mother was discharged from the hospital 2 days later without any complication. We subsequently returned to Nepal on  November 12, 2006.

My mother was free from further arrhythmias for the next 6 months or so, but to our disappointment, she again developed some sort of arrhythmias—initially brief episodes which subsequently developed into 7-8 hour long episodes. I quickly wrote to Dr. Jaïs in June 2007 with copies of the ECG, to which he promptly responded explaining that the arrhythmias were no longer A-Fib and that these were atrial tachycardia. He suggested a repeat ablation on July 31, 2007 as the anti-arrhythmic medications (Flecainide and Bisoprolol) my mother was taking were no longer effective.

While this was a big disappointment for us, I was aware of the fact, from the information in A-Fib.com and other sources, that it is difficult to treat chronic A-Fib cases. Therefore, I gathered up my courage once more and convinced my family, especially my mother, to go for a repeat (a third) ablation. Fortunately, the third ablation, also performed by Prof. Haïssaguerra and Dr. Jaïs, was almost like the second one—simpler and briefer. We were out of the hospital after 3 days. This third procedure involved an electrophysiological study which showed that previously ablated locations in the heart remained completely isolated, and an aggressive pacing which induced an A-Fib. Mapping showed fractionation relatively localized in the posterior right atrium, which was successfully ablated, and A-Fib was no more inducible even using Isoproterenol.

At the time of this writing (August 30, 2007), my mother continues to remain free from any form of arrhythmias. As Prof. Haïssaguerra and Dr. Jaïs were quite optimistic about the long term result, we keep our fingers crossed.

While I had promised Mr. Steve Ryan a write-up about our experience much earlier—soon after my mother’s first and second ablation earlier this year, I decided to defer it in view of the reoccurrence of my mother’s arrhythmias. I was somewhat disappointed and felt I did not have a success story to tell. However, after having gone through the ordeal of the third ablation, I have realized that despite Prof. Haïssaguerra’s and Dr. Jaïs’ optimism, it is still possible that my mother’s A-Fib/tachycardia is still not fully cured. But this does not mean that I should not share our experience with others. I have greatly benefited from the personal experience stories by various individuals in this forum, who had successful as well as not-so-successful stories to tell.  I am very grateful to them for inspiring me to write my own story.

While the long-term outcome of my mother’s third ablation remains to be seen, I personally consider the treatment my mother received at Bordeaux hospital as a success. This is because I compare my mother’s situation during July-October 2006 when she was in persistent A-Fib and her present condition, free from A-Fib so far. I vividly recall how miserable she was and how helpless the whole family was during the period of her persistent A-Fib. Even if she is not fully cured, we hope her arrhythmias would be paroxysmal at worst.

In conclusion, I would like to share an important lesson that I have learned over the years while dealing with my mother’s A-Fib. Never give up hope and explore as widely as possible to find a way out. There will be a way out however imperfect it may be. I have experienced first hand how true one of the key messages in A-Fib.com is; i.e., one needs to go beyond the doctors who are ignorant about A-Fib-ablation and advise patients to live with A-Fib. In our own experience, I had consulted quite a number of cardiologists in Nepal, India, Thailand, and the UK all along, trying to find a permanent cure for my mother’s SVT/A-Fib, as I was not comfortable with long-term medication. However, none of them pointed us to the direction of A-Fib ablation as a possibility.

I would also like to share our experience with Amiodarone, a very effective anti-arrhythmic drug which my mother took for over 12 years. While fortunately my mother did not develop some of the deadly side effects I have read about (e.g., pulmonary fibrosis), she did develop several other side effects—ITP, dysfunctional thyroid gland and corneal deposits in the eye.     

Please feel free to contact me with any questions or suggestions you may have. My email address is: peanuts@mos.com.np   Raju Tuladhar, Kathmandu, Nepal.

bullet A-Fib Symptom Free Since 2001, Thanks to Dr. Marchlinski
Adam R. Smith writes (10/15/07), "I just wanted to thank Dr. Marchlinski for all of his efforts and expertise in completely resolving my A-Fib on 12/12/01 via ablation. To date I have had no reoccurrence of an A-Fib episode and QOL (Quality Of Life) has been outstanding.
Thanks again Dr. Marchlinski."
 
bullet Ablation at Bordeaux After Failed Mini-Maze Operation Go to http://af-ideas.com/My Wolf Mini-Maze III  Bordeaux.htm
 
bullet    Ablation at New Delhi, India for $5,200
    (Barry Gordon had his ablation procedure at Escorts Hospital in New Delhi, India. The costs of the procedure including airport pickup, private accommodation, food, etc. were around $5,200 US. The address, phone number, etc. of Escorts Hospital are included at the end of his story.)
 
    I am writing this as a closure to the last 12 months of pure Hell. I just returned from India a few hours ago after a roller coaster ride of thoughts and emotions that these occasions naturally bring on, not helped in any way by some unbelievable downers.

MY A-FIB
    If you take a bucket of water and pour it down a sink, that's how a normal heart operates. If you take a five-gallon water dispenser bottle, hold it upside down, and pour it into the sink, the water flows unevenly, gurgles, bubbles up, etc. That’s what an A-Fib attack is like to me. The higher the fibrillation rate, the worse it feels.
    The term Ejection Fraction (EF) refers to the efficiency of the heart. It basically refers to the percentage amount of blood in the Left Ventricle that is pumped out at every beat. Normal Ejection Fractions are between 55% and 75%. Anything above or below these figures indicates a problem. Hearts tend to deteriorate with age, leading to lower EFs. Doctors become concerned when EFs get around 30%.
    My EF was 67% at 55 BPM normal rhythm, and 60% at an average 110 BPM in the early stages of an A-Fib attack. That’s probably why I usually didn’t feel an A-Fib attack when it started. My EF then would get worse depending on the severity of the A-Fib attack. Any attempt to walk brought on instant dizziness. Eventually I’d get dizzy and lightheaded even when sitting down. The only good thing is that, when the A-Fib attack stopped, the effect was always dramatic. Within minutes I’d be back to normal, especially with clarity of thought.
    I have now reluctantly accepted that my A-Fib is probably due to a genetic fault, and that an A-Fib ablation procedure is the final answer. Fortunately medical science today is moving rapidly to stem the flood of A-Fib cases that for some reason is hitting the baby boomer generation.

FROM MACAU TO ESCORTS HOSPITAL IN NEW DELHI, INDIA
    After leaving Macau where I live, I arrived at Escorts hospital in New Delhi, India around 11.30 pm on June 11, 2007. Within one hour I was in A-Fib. This didn’t surprise me. My A-Fib attacks had become so frequent that I was getting them every 12 hours. They lasted between 36 to 48 hrs. I was rapidly approaching permanent Atrial Fibrillation.
    My heart rate bounced between 110 BPM to 150 BPM with spikes up to 178 BPM. (My resting heart rate is relatively low at between 52 - 58 BPM, probably due to years of exercising.) A-Fib heart rates this high are relatively uncommon. There are heart drugs (rate control drugs) that can be used to lower the general heart rate, thereby minimizing the damage to the heart in general.
    I managed to get to sleep that night. When I awoke I was still in A-Fib. But I almost welcomed the A-Fib. The doctors would actually be able to witness my A-Fib as it happened, and could map out the errant signals with all the new technology. They could ablate the actual sources of the errant signs which greatly helps chances of success.
    I went through the day being processed and prepped. (By now needles and tests no longer bothered me.) By far the worst test was the camera pushed down your throat so they can check for blood clots in the heart. The worry here was that I may have a clot in the heart due to the A-Fib. This would cancel all further tests, and the whole ablation procedure would be called off. I had heard this two minute test was pretty bad. Many people have to be put under as their throat naturally rejects the tube. I couldn’t help retching and gagging as that tube was forced down my throat. But, determined not to make one sound whatever happened, I got it down at the second attempt.
    Escorts hospital in India is good at resolving plumbing problems of the heart. It has virtually a moving conveyer belt of major heart cases being resolved every day, with very importantly a very low incidence of infection, which I hear is prevalent in the NHS. However, no one knows much about the electrical side of the heart, and why people like me who are otherwise perfectly healthy get A-Fib. This is called Lone A-Fib with no known cause. Most cases of A-Fib happen due to other faults in the heart such as Coronary Heart Disease.
    The easiest way to stop the errant signals that cause all the A-Fib problems is to have that part of the two Pulmonary Veins that enter the left side of the heart ablated - destroyed - around the joint where the veins are glued to the heart. This is done by entering the heart and causing a series of burns all around the joint. These many burns are like circular spot welds, like constructing a Fire Wall. Think of trying to stop a stream with round stones. Chances of success on the first try are around 50% -70% tops.

THE ABLATION PROCEDURE
    My doctors at Escorts Hospital were Drs. Anil Saxena and T. S. Kler. They said they might perform my ablation procedure this very afternoon rather than the next day as I was originally scheduled. So, re-adjusting myself and knowing they would catch the A-Fib attack in full flow, I waited in what was now becoming a bit a of a dull headache blur. My heart rate was around 110 BPM. But no one came for me.
    There was nothing to do but wait for the next day as originally planned. Expecting to be in the lab very soon, I actually welcomed another day in A-Fib. I was even more eager to get the ablation over with. But at 12.40 pm while I was staring at the TV, my ears suddenly 'popped' and instantly my thoughts were clear again. I got that indescribable feeling you get when coming out of A-Fib back to the land of the living. This feeling of euphoria was soon lost as, along with the feeling of relief at being out of A-Fib, I also lost a bit of the cast iron resolve I had saved up. But fortunately I still had some in reserve. At 12.50 pm, just ten minutes after the ear 'popping' which had never happened before in my approximately 50 previous A-Fib episodes, in came the nurse and said, "Lets go, Mr. Gordon."
    Being wheeled into the catheter lab was like entering a spaceship. .About six doctors or technicians were looking out from behind a wall-to-wall, floor-to-ceiling sheet of glass in what I presumed was the command center, a similar set up to the 'Electric Chair.'
    I had only one fear. I hate needles, etc. The thought of them cutting a slit in my groin and then pushing in 'sheaths' to get the catheters into the body and then manually on up into the heart itself was very scary. Just the nurse cleaning the area had me turning into an iron bar. Still not a sound sneaked out. After they inserted the catheters (think cables in push bike breaks), my main fear was now over; and, feeling OK, I started to relax. I had no fear whatsoever about the welding torch going into my heart. So for me, the worst was over with, thank God.
    All this feeling good about myself was brought crashing down as they proceeded to cut into a vein in my throat to push in yet another 'sheath.' I became an iron bar again, quiet as a mouse. I was after all an Englishman abroad, and it wouldn't do to let the good people of the colonies see any sign of weakness in a former soldier of the Queen.
    I was by now covered head to foot in heavy 'lead blankets' to fend off the radiation, but I could clearly hear my regular heart beat on a nearby monitor. That sound, and the feeling of someone pushing in the cables were my only sensations, easily tolerated.
    The catheters enter the heart via the right Atrium, which is where Atrial Flutter skulks in the shadows. Having both Atrial Flutter and Atrial Fibrillation I had discussed zapping the Flutter as well while inside the right side of the heart. The doctor had already decided that was going to happen after reading the many ECG printouts I had brought along with me.
    So, now for the welding bit. I could hear someone saying "this point," after which I got a small burning feeling in my chest. Not a sound out of my lips. I was going to get through this without even a squeak. I settled down for the expected next six hours on the block. The ablation burning went on for about thirty minutes with the "this point" followed by a burning sensation every few minutes, as the guy at my right side manually maneuvered the catheter via the brake cable.
    Drifting off to sleep I suddenly heard, "Ok, Mr. Gordon. We are going to enter the left side of the heart now." "So the Flutter’s gone." I said, thankful the Flutter ablation was done. A-Flutter sometimes triggers its big brother A-Fib but is easily cured 100%. "No, we will get that on our way out." This clearly threw me. What were the burning sensations for the last 30 minutes????
    To get to the left side of the heart where most A-Fib originates, there is no alternative but to puncture the dividing heart wall (the Septum) (for a further explanation of this part of the ablation procedure, see The Transseptal Wall Puncture).. This is what makes the procedure a bit risky. Also they now have to maneuver the catheter cables through a wall of muscle which is a far more tricky situation."
    We are through now, and we will start on the ablation process." Expecting the preceding burning sensations, I wasn't bothered and decided to sleep through it all. This was a big mistake. The first burn give me what a mega heart burn must feel like (no pun intended). This immediately made me turn from a ton of lead into a flying carpet. But not one murmur. However, the sound and sight of my clenched teeth cracking and shattering made the doctors decide to bring on the Panadol.
AFTER THE ABLATION
    I finally woke up at about midnight in the recovery room with my back absolutely killing me, but it was more of an ache than a pain.
    Fast forward about nine hours. Waking from a deep sleep I noticed the beating of my heart. It was a bit fast but in perfect NSR! I got myself out of bed and checked the heart rate on my athletes H/R monitor. It showed a perfect heart beat of 76 BPM, not even a missed beat every now and again. Around 30 minutes later the nurse came in with my first meal in the last 24 hrs. I wolfed the lot down (which wasn’t a lot), then sat on the sofa to watch TV, although I was really listening to my heart beat. "Could this really be true? I've beat it and got my life back!"
    Never being one to enjoy success knowing there's always a price to pay, I remained cautiously confident just sitting there.
    Then it happened. I could feel the A-Fib trying to start up again, but I was hoping the Fire Wall would hold it back. But no. On feeling my pulse I knew I was in A-Fib again. There can't be many greater depths of despair than a failed ablation for A-Fib and a possible future of no future. I already knew many ablations can start unraveling after about three months and required further 'touch up,' but 12 hours?????????.
    The only good thing was the H/R was bouncing around between 75 to 90 BPM. With my apparently mechanically sound heart I could tolerate this slower speed A-Fib, although my quality of life would still be drastically reduced. An hour later the doctor came in with a smile on his face. "The procedure went well. How are you feeling?" he asked. "Not too bad, but I'm still in A-Fib." He couldn't believe it, but on checking he confirmed the A-Fib. I said "You did the spot welding bit at the Fire Wall, yes?". He answered, "Yes, it was all OK."
    "Did you get the guys with the black hats that were causing the problem in the first place?"
    "We couldn't find them, and we paced your heart up to over 171 BPM for as long as we could, and not a spark in there."
    What he probably didn't know, but I do from experience, is that after an A-Fib attack your body seems to know it will destroy itself if it goes into A-Fib again too soon. So, you enter a period where you are somehow protected against any more A-Fib for whatever is your AF schedule at that moment in time. My schedule had dropped steadily from once every two weeks last August to every twelve hours before I’d go into an A-Fib 48 hour nightmare.
    The doctor told me not to give up hope, because he had done a good job. And it takes three months before the ablation procedure can be classified a success or a failure. They decided to monitor me for a further 24 hours rather than discharge me. 24 hours later there was no change. So I asked if they could hit me with the two electric irons (Electrocardioversion) and get me back into NSR, so that I might enjoy the next 4 days in Delhi. For some reason in our many discussions the doctor had gotten the impression that I did not want to be shocked. But then he said, "OK, let’s go."
    One hour later I recovered from the Electrocardioversion to find I was still in A-Fib. Talk about being pi**ed off.
    I spent the next 24 hours trying to come to terms with all this. There are other hospitals that do the same ablation treatment with perhaps higher success rates, but the top ones are in Cleveland, Ohio America, Bordeaux in France, and Milan in Italy. And they all have long waiting lists and are expensive. Even in England which is a relative novice in the procedure, it costs at least $20,000. And they are on a steep learning curve compared to the top 3.
    The only nearly 100% cure is via major open heart surgery, which is obviously the last resort, costs a bundle, and has long waiting lists.
RELEASED FROM THE HOSPITAL
    I went to a 3 star hotel that night at about ten bells to wait out the next three days before my flight home.
    Feeling pretty down on waking the next day, I could feel the pulse at my heart against the pillow. I heard 6 clear bumps before I pulled away as I decided to try to accept this A-Fib thing, and stop checking my pulse whenever an episode was kicking off. A similar thing happened later in the afternoon as I lay watching CNN, but not hearing a word.
    To lift my head higher so that I could see the TV I had put my right hand under the pillow and subconsciously must have started counting my heart beats. I realized I had got to 13 solid beats before I felt the rhythm go wrong. 13 solid beats wouldn’t seem like a big deal, but to me they gave me a bit of relief. I was definitely feeling a bit better each day and more focused mentally.
    I traveled everywhere around Delhi in a Tut Tut the next day, no walking. I decided I was possibly strong enough to make the 4 hour car journey to see the Taj Mahal, but just before the evening meal I felt strange things going on inside which resembled A-Fib trying to start. I struggled through the next 6 or 7 hours trying to keep my mind off the possible A-Fib which at least I knew was much weaker than before the ablation. Unlike before, I had no profuse sweating and continuous trips to the bathroom, followed by having to drink a lot of water.
    I awoke the next morning sleeping on my left side, something I had stopped doing at least 6 months ago because of the A-Fib. Too tired to carry out my promise to not count heart beats any more, I could hear a steady bump, bump until I stopped counting. This was a good sign. That's were I am now as I sit at the computer not knowing whether I am in A-Fib or not.
    What I forgot to mention is that starting on the 18th of June I started taking the dreaded Amiodarone which burns out your thyroid gland over time. But the doctor asked me to take the tablets for the next two months to give my heart a break, and to possibly help it remodel itself for the good. Hopefully my heart would start getting in the habit of not being in A-Fib.
    I'm feeling a bit stronger each day, but not taking it for granted. I'm taking two weeks off, although I can function like anybody else as long as I take my time.
    (Writing a month later Barry adds,) I am off of Amiodarone now and just take a small dosage of warfarin which I hope to stop taking in approximately one month’s time. I have been A-Fib free for at least a month now with no palpitations or "rumblings" since I stopped the Amiodarone. I feel normal again and can have a few beers in peace.

Barry Gordon, E-mail: barrythuy(at)macau.ctm.net (The "@" is written out at "at" to prevent access by automated spam search engines.)

Escorts Heart Institute & Research Center
Okhla Road
New Delhi - 110 025
India
Contact Dr. Sanjay for reservations.
Phones: 26825000, 26825001
Fax: 26825013
Grams: ESHEARTINS
E-mail: ehirc(at)vsnl.com (the "@" is written as "at" to prevent access by spam mailing engines)
Web site: http://www.ehirc.com

bullet Cryo Balloon Catheter Ablation at Mass. General
   

MY CRYOABLATION STORY

July 31, 2007

    On July 11, 2007, I had a Cryoablation at Massachusetts General Hospital by Dr. Vivek Reddy.  I participated in the pivotal Stop AF trial using CryoCath’s Arctic Front balloon catheter for pulmonary vein isolation.  Dr Reddy also used the CryoCath Freezor Max catheter for treatment of my atrial flutter.
    I’d like to tell you about my recent Cryoablation, as well as the events leading up to it.  I’ve benefited greatly from the wise counsel on this site and hope my story will be helpful to others. I apologize in advance for the length.  I’ll discuss my experience with A-Fib first and the Cryo second.

MY HISTORY OF A-FIB

    I was diagnosed with A-Fib almost a year ago exactly, at age 43.  Once I knew what A-Fib felt like, I could see that I had been having events since the late 1990s and maybe earlier.  I would often wake up in the middle of the night short of breath and had several episodes during athletic activities as well.  Prior to my diagnosis I had thought these events were anxiety or asthma attacks.  Consequently, I was seeing a therapist and had been on Klonopin (anxiety medication) for 4 years.  I also was on maintenance doses of Flovent (asthma medication) which I took daily, and carried another inhaler for use during my attacks.
    I have been an avid endurance athlete since I rowed crew at Harvard.  In 2001, I participated for the second time in the Canadian Cross-country Ski Marathon which is 100 miles over 2 days, the longest cross-country skiing event in the world.  The first day was canceled due to high winds.  Early the next morning while taking the bus to the start for the second day, I noticed that my heart rate monitor read 120 bpm just sitting there on the bus.  “Boy, am I excited about this race!” I said to myself.  Well, once the race started I knew differently!  Everyone passed me. I must have fallen down 15 times due to weakness in my legs.  Thinking my shortness of breath was due to asthma or lack of training, I kept going eventually and painfully finishing the 50 mile day.  It never occurred to me it could be my heart!
    So a year ago I was finally diagnosed.  Initially no medication was prescribed as I went through the battery of tests: halter monitor, chemical stress test, echocardiogram. Then one episode put me in the emergency room, and I was put on Norpace.
    Following several A-Fib breakthroughs, I was put on Pindolol, and the Norpace was replaced by Flecainide in September.  The medication succeeded in stopping my A-Fib, but I had difficulty tolerating the side effects:  shortness of breath, dizziness, low energy, heavy legs, night sweats, yuck!
    While all this was going on, I enrolled myself in the Cardiac Wellness Program at Dr. Herb Benson’s Mind Body Medical Institute to focus on heart health via meditation, relaxation, nutrition, and light exercise.  Their program helped me, but was more focused on heart disease than arrhythmia. At this point I limited myself to walking on a treadmill a half hour a day at 8 degrees tilt and lifting moderate weights at 15 reps twice a week. I meditated 20 minutes a day.
    In December I replaced the Pindolol with Metoprolol to no large improvement in side effects.  In February, I replaced the Metoprolol with Cartia XT and saw some side effect improvement but also started having A-Fib events again.  In early March I replaced the Flecainide with Rythmol and saw additional side effect improvements, but also started having A-Fib breakthroughs more often and of longer duration.

CRYOABLATION

    I had been considering having an ablation since December but wanted to try out all my chemical options first.  I knew I could continue on medication for several years, but my quality of life was definitely suffering.  I was having difficulty concentrating at work, and all I wanted to do was sit in front of the TV at home.  I was having breakthroughs every week or two, and I was concerned about the remodeling of my heart.  I decided this had to change and that, although it had risks, ablation was a route I had to try.  It seemed I would need an ablation sooner or later; and sooner, when my heart was still strong and I was still paroxysmal, seemed better.
    I chose Dr. Vivek Reddy at MGH (Massachusetts General Hospital) as the best guy in New England.  My insurance would only cover me if I stayed in New England.  We set a date for the procedure, and then I got a call from him offering me a chance to participate in a clinical trial for Cryoablation.  The trial was such that, if I agreed to participate, I would have a 2/3 chance of getting the Cryoablation procedure immediately. I had a 1/3 chance of being placed in the control group and would have to take medications for 6 more months, then I could have the Cryoablation. (See CryoCath Balloon Catheter Clinical Trials.)
    I was naturally concerned about participating in a clinical trial.  Ablations have enough risk as it is.  I was cautious about adding more.  But the more I learned about Cryo, the more I realized that it was theoretically safer than radio frequency energy.  Cryo does less damage to tissue than RF and consequently is less likely to create problems like esophageal fistula, pulmonary vein stenosis, stroke, etc.  And rather than using a pencil type catheter, in Cryo you can use a balloon catheter which theoretically can produce a more uniform ablation.
    While the CryoCath Arctic Front balloon catheter is newly approved in Europe, it was not yet approved in the US.  Dr. Reddy was one of 2 doctors in the country to perform the first stage of the trial, with 20 patients each. Success rate with no medication was about 75%, comparable to RF ablation.  Dr. Reddy had also performed another 20 in Eastern Europe.  He had also demonstrated a Cryoablation at the Boston Atrial Fibrillation Symposium.
    Because of the success of the initial trial, the FDA approved the second “pivotal trial” of some 200 patients in many more centers across the country.  This trial would use the next generation CryoCath Arctic Front balloon catheter with 2 balloon sizes instead of 1 and a more flexible sheath.
    When I spoke with Dr Reddy about my participation in the trial, he said I could expect a comparable success rate to RF, but with less risk.  I asked him if it was his family member who had the choice, what would he do? He said he would choose the Cryo, even if he had to wait the 6 months extra to get it.  He was convinced it was safer due to the reduced tissue damage. The real question according to him was whether the Cryo lesions would be effective for as long as RF lesions. Since this is new, no one knows the answer to that yet.
    Needless to say I decided to do the Cryo, constantly reading all I could to find a reason not to believe my doctor.  Beyond the obvious conflict of interest, everything I read said that Cryo had the most promise of being the next generation technique for A-Fib ablation, because it was likely to be safer.  And I knew I had the most experienced Cryo guy in the country as my doctor.
    Some interesting links:
http://www.peerviewpress.com/dedicated.do;jsessionid=
DB4F2D1F0B4AEF33FDD0DBC8143701BA?page=r332 A presentation by Dr. Reddy on ablation safety and efficacy, as well as some of the advantages of Cryo

http://www.cryocath.com CryoCath web site.

http://www.cryocath.com/en/4.products/41.1.4.ep.eur.arctic.front.asp Info on the Artic Front balloon catheter.

http://www.cryocath.com/en/20.document.center/20.1.4.ep.video.
photo.asp Various videos of Cryo impact on tissue vs. RF. To see a dramatization of the Arctic Front balloon catheter at work, choose the last video called Artic Front.
    Just before my procedure, CryoCath published an article covering a study of over 300 cryoablations presented at the European Society of Cardiology (Europace) Conference in Lisbon. They reported an 84% success rate with paroxysmal patients. They also reported a 7.5% incident of phrenic nerve injury, which is high; although all of them resolved on their own in less than a year. The article noted that no esophageal fistula or pulmonary vein stenosis was reported. http://www.cryocath.com/en/7.news/7.0.news.asp?id=631

MY CRYOABLATION PROCEDURE

    My procedure took place on July 11, 2007. Due to unrelated back pain which made it painful for me to lie flat, I had general anesthesia rather than the normal sedation.  As a result, I can’t tell you much about the procedure experience since I was asleep.  One thing I do know was that it took a long time, due to the study protocols.  I was put under around 8 am and woke up around 3:30 pm for a total time of about 7 ½ hours.

Here are some highlights from the Cardiology Report.

bulletMRI imaging was used for mapping
bullet2 catheters inserted via my right femoral vein and 3 catheters via my left femoral vein
bulletI continued my warfarin until the day before the procedure.  Heparin was used during the procedure
bulletFor the Left Superior Pulmonary Vein (LSPV), 2 lesions were performed with both the 28 mm CryoCath balloon catheter and the 23 mm balloon catheter
bulletFor the Left Inferior PV, 3 lesions were performed with the 23 mm balloon catheter
bulletDuring ablation for the right pulmonary veins, pacing was performed with phrenic nerve capture to ensure there was no damage to the vein
bullet For the RSPV, ablation with the 23 mm balloon was stopped early (within seconds of capture) due to paralysis of the right diaphragm that significantly resolved within 10 minutes. At the end of the procedure, normal diaphragmatic motion was observed with pacing. (If this would have happened with an RF ablation, the paralysis of the right diaphragm might have been more difficult to resolve.) One other lesion was performed with the 28 mm balloon catheter.
bulletFor the RIPV, 4 lesions with the 23 mm balloon and 1 lesion with the 28 mm balloon
bulletThe CryoCath Freezor Max 9F catheter was used to create a cavo-tricuspid isthmus ablation and bidirectional block was checked and confirmed after the ablation. (This is a right atrium procedure to help prevent Atrial Flutter.)

    Following the procedure I was told that they successful isolated the pulmonary veins but that there was some phrenic nerve damage. The phrenic nerve helps the diaphragm expand so you can take in air into your lungs.  Apparently they make you hiccup to be sure the phrenic nerve is not harmed.  When I stopped hiccupping, they immediately stopped ablating and I resumed hiccupping about 10 minutes later.  Upon examination, I was taking air into both lungs, but the chest X-ray did show one side of my diaphragm noticeably higher than the left.  I was told this almost always resolves within a year, and they plan to follow this closely.
    During recovery in the hospital the same day and next day, I definitely felt discomfort in my chest---kind of a burning and heaviness that was worse when I lay down.  I had no noticeable trouble breathing at all. I also noticed a sore throat that made it difficult to eat anything but soft foods.
    I went home on schedule the day after the procedure.  2 days later I called my doctor as he instructed because I was still having some chest pain and wanted pain medication.  When I mentioned I was still having pain when swallowing food, he decided to readmit me to be extra sure there was no damage to my esophagus (scary!).  He told me he was very sure all was fine but wanted to be safe.  First I had a chest CT scan that didn’t show anything definitive about my esophagus, but did show moderate fluid around my heart and a bit of fluid also in my lungs. Apparently no big deal other than to monitor (I had no fever).  The next day they put a camera down my throat under sedation and discovered that I had an infection which could be treated with an antibiotic.  Apparently the instruments they put down your throat with anesthesia had disrupted an infection already brewing, or perhaps created one.  Either way it was easily treated, to my relief.

    I am now about 3 weeks post ablation and am back at work full time.  I can function around the office pretty well, and I took a half hour slow walk yesterday that definitely taxed me but was doable.  I still have some mild chest discomfort when I walk up stairs or otherwise exert myself, but it is tolerable and getting better steadily.  I still don’t notice any breathing issues.  This may change when I am able to do more rigorous activity, but we’ll see.  I have my 1 month follow up appointment next week and will certainly know more then.
    I am very happy to have emerged relatively unscathed from the procedure, and I have been in sinus rhythm steadily since.  I have great faith in Dr Reddy and feel I was well served under his care.  I feel better and stronger every day, and I look forward to a full recovery. So far I am very glad I pursued the ablation option and the Cryo option as well.
    Again, I apologize for the length of my account.  I hope you found it interesting and useful.  Please let me know if I can answer any questions.
    Thanks.
    Terry
E-mail address: terrydewitt1(at)gmail.com (the "@" is written as "at" to prevent access by automated spam mailing lists.)
 

UPDATE AT FOUR MONTHS AFTER CRYO ABLATION:

    I am doing very well, feeling strong and have not had an AF event since my procedure.
    At my 1 month check-up, the phrenic nerve damage had completely resolved.  Dr. Reddy discontinued my Rythmol at that appointment, and my Cartia XT two weeks later.  Once I stopped taking those medications, I felt my energy returning, my head clearing up, and most of the side effects I'd been experiencing vanished. The next month or so were spent taking half hour walks at lunch and slowly increasing my activity level.  I had some persistent discomfort in my chest, particularly upon exertion, that seemed to be due to some lingering inflammation around my heart.  A few days of Motrin cleared that up.
    I now do about 30 minutes of aerobic exercise 5 days a week at a heart rate of about 125 bpm.  I also try to do weights (high reps) 2 or 3 times a week for about 20 minutes.  This level of activity seems about right without pushing it too hard.
    Last Friday, following 2 holters 2 weeks apart, I was allowed to stop taking Coumadin.  I am now completely off all of my meds and I feel better than I have in a long time.  I can't tell you how optimistic I feel about my future and how bright my mood is compared to 6 months ago.
    I am very glad I pursued the Cryoablation.
Terry (November 7, 2007)

bullet Mowing the Lawn Three Days After an Ablation Reese Smith had a PVA(I) at the Un. of Virginia A-Fib center June 12, 2007. Three days later he is in normal sinus rhythm and mowing his lawn with a push mower. He never took meds to prevent A-Fib, because he believed they were not a long term solution. He will share his story with anyone who wants to call him:
    (540) 943-4329
    sreesesmith (at) hotmail.com (the "@" is written out as "at" to prevent access by spam mailing lists)
    (In an E-mail August 6, 2007 Reese feels great and is in NSR (Normal Sinus Rhythm) since his ablation. He took amiodarone for 30 days post ablation, and Coumadin for 90 days post ablation. He recommends the Un. of Virginia A-Fib Center. He made some comments which are very relevant to new patients with A-Fib.)
    "It seems lots of people are in denial about their A-Fib condition and seek all kinds of info about the condition as well as all kinds of remedies. My experience indicates you can get information overload, AND that alternative medicine does not work. For me ablation is the best long term solution.
    I've posted my rather direct statements on another A-Fib web site and have been criticized by those who choose to be very academic and verbose. These people are not bottom line thinkers, and i think give false hope to those early a-fibbers seeking answers, not BS."
 
 
bullet Cyclist/Triathelete with Persistent A-Fib
    I am a 60 male and have been a competitive runner, triathlete and cyclist for most of my adult life.  Over the last five years I have competed at the World Masters Road Cycling Championships in Europe placing as high as 7th in the time trial.  Virtually all of my cycling training has been heart rate based and more recently, my running as well.  Coming off a highly successful triathlon season last year (2005) where I won a World Master Games Age Group championship I decided to take a break from cycling last fall and winter and switch to full time swimming. 
    Things were going fine until one day after a particularly hard swimming workout, I felt like crap (early Feb).  Not having been concerned about my heart rate while swimming—it naturally tends to run much lower than my vertical (running and cycling) heart rate, I attributed my lousy feeling to a touch of the flu.  I checked my pulse and noted that it seemed to be high—around 90—when it should have been 70 or less as I recovered from the workout.  The next day, I still felt under the weather but decided to go out for a bike ride.  Right from the start, my heart rate was higher than normal—running around 95 to 100 when normally it would have been 15 to 20 beats lower.  It quickly jumped up to 120 with very little effort and, as I increased my effort, it jumped to 145-150 (when it normally would have been 110-120).  While all of this was happening, I noticed that I felt like I was just finishing a sprint with an out-of-breadth sensation, but I wasn’t working that hard.  That’s when I knew something wasn’t quite right. 
    After taking a day off, I decided to bite the bullet and pay my doctor a visit.  He confirmed what I had suspected, that I had an arrhythmia situation going on.  A few days later I was seen by a cardiologist and diagnosed that I was in A-Fib. 
    Up until then, I knew nothing about A-Fib and was as surprised as anyone that with my long history of aerobic and anaerobic activity that I should develop a sudden onset of A-Fib.  My cardiologist started me on a blood thinner, Coumadin, and advised that I could resume normal workouts with the understanding that I would probably continue to feel out of breath at higher levels of activity until I returned to normal sinus rhythm.  Well, I continued to work out with no change to my A-Fib.  It had set the hook and wouldn’t let go.  After the first week or so, it seemed I became adjusted to the A-Fib and no longer had that flu-like feeling.  But I still got a head rush every time I stood up, had the out of breath sensation at higher workout levels, and had a general sense of being more tired than I remembered. 

    Well, the A-Fib persisted; and once I was stabilized on the blood thinner, I had my first cardioversion (Apr 20, 2006).  At that time I was started on the drug Altace though I frankly did not really understand what benefit I would derive from it, but took it anyway. (Altace is an ACE inhibitor usually used for high blood pressure and to reduce the risk of heart attack.)
    Told I could resume my normal activities right away, I took one day off and then had a comfortable swimming workout.  The next day I went out on the bike and things were going fine until my heart rate jumped from a steady 135 to 170!  I slowed immediately hoping it would return to normal sinus rhythm, but no such luck.  I was told to discontinue the Altace and one week later I went back in for my second Cardioversion (May 4, 2006).  I was then started on Rhythmol SR which, as I understood it, would help keep me in normal sinus rhythm.  Well, I stayed in normal sinus rhythm until a week later when, while swimming at the Masters Short Course Swimming nationals, I reverted to A-Fib during the 200 yard freestyle event (I faded to 7th in my age group as a result).   That’s when it became clear to me, that there was an ablation procedure in my future.  Note that I discontinued the Rhythmol SR per EP (electrophysiologist) direction. 

    After doing quite a bit of research on the Internet and consulting a cardiologist friend of mine, I decided I would need to part ways with my current cardiologist, who had only performed a handful of A-Fib ablations and track down a more experienced EP. This search wasn’t quite as easy as I had hoped, owing to the challenges of dealing with my HMO healthcare plan.  However, my persistence finally paid off when I was able to be seen by a highly recommended Arrhythmia group, Florida Arrhythmia Consultants, here in Fort Lauderdale.  My new EP, Dr. Philip Zilo, was in complete agreement that in my situation, an ablation was my best option. 
    [NOTE:  I gave serious consideration to trying to get into the Cleveland Clinic here locally (Weston), only to discover that they were out of network.  Wouldn’t you know it, though, the Cleveland Clinic in Cleveland was in network!  However, it was likely not going to be until Winter or even Spring of 2007 before I could reasonably expect to be scheduled for the ablation.]

    Aug 7 was the big day, but I had to go in 3 days early to be taken off of Coumadin and started on Heparin.  During the procedure, my EP did:

 

bullet Left atria PV regions, circumferential pulmonary vein antrum isolation, posterior line and Mitral isthmus
bullet Right atria between the tricuspid annulus and the inferior vena cava


Following the procedure, my cardiologist was a little surprised that I did not have a little more chest discomfort.  Apparently, he uses that as a gauge of how deep the RF burns were.  He spent five hours doing the procedure which he indicated was normal. 
    [NOTE:  You read on some web sites that the procedure takes as little as 1 to 1 and half hours.]
    Other than starting back up on Coumadin, I wasn’t put on any medication. I remained in the hospital another 3 days, for a total of 6, awaiting my Coumadin level to rise to an acceptable range. [NOTE:  Going into the ablation procedure, I had no idea I would be in the hospital 6 days.  You can be in and out for a heart transplant in 6 days!]

    My cardiologist indicated I could resume normal physical activity 4 days after the procedure.  Wanting to play it safe, my plan was to go cold Turkey for several weeks to give the scarring plenty of time to heal.  However, on Day 5 (Aug 12) after the procedure I was doing a little light work outside—it was particularly hot and humid—with my heart rate running around 85 when I reverted to A-Fib.  I saw my cardiologist Aug 14 where he started me on Toprol to see if that would have any effect.  It did not, and he cardioverted me on Aug 17.  Six days later, I was once again outside doing some light work when the same thing happened.  Brought me in the next day—I was becoming a regular around the corridors of Northridge Medical Center in Fort Lauderdale—for my 4th cardioversion.  This time he started me on Rhythmol SR.  At this point, 18 days after the ablation, he was becoming concerned that the ablation procedure was not a success---even to the point of discussing my follow-on procedure where he would plan to use a new catheter tip which had just recently received FDA approval (a cooled tip which allows more energy to be dispersed over a wider area as I understand it). 
    Now I didn’t just fall off the turnip truck, so I stopped going outside for anything for the next week!  Then I started a very easy regimen of walking knowing my wife and I were going to be spending 3 weeks in Europe, so I wanted to get in some semblance of walking shape.  By this point I was really gun shy and was particularly anal about watching my heart rate monitor in the days and weeks ahead.  (He uses two monitors, the Polar S510 and a backup Timex which doesn't record data. He wears a monitor for all cycling workouts, and also when running.)
    I started my walking regimen on Sep 4, 2006 at a heart rate of 78, building by 1 beat per day.  I started riding the Lifecycle while still in Europe building to a steady heart rate of 105.  I should also point out that my cardiologist advised NO caffeine and only 1 glass of red wine per day allowed.  He wasn’t too keen on decaf coffee even, but accepted that I would be drinking 1 cup of decaf a day.  This of course meant I also had to switch to caffeine free coke which the Europeans haven't discovered!
    Dr. Zilo wanted me to accelerate my workout efforts. After nearly two months of being in normal sinus rhythm, he felt it was time to determine if the procedure was a success, especially given the two episodes of A-Fib post procedure. I was probably the best conditioned persistent A-Fib cyclist going into the procedure, so the time off the bike (I had hung up my bathing suit in the Spring for the time being) was probably a welcome rest. I felt really fresh, especially given that I was in normal sinus rhythm.
    Nov 5, 2006, I completed a century ride (100 miles) on my bike at an average heart rate of 127 and a max of 151.  My previous LT (lactate threshold) was 148 which I have been able to successfully maintain for intervals of 5 minutes and longer as I look to regain my previous cycling form.  My cardiologist seems to be as surprised as anyone about my turnaround. (I had actually done a couple of centuries during the Summer while still in A-Fib, and maybe that helped a little with muscle learning. Surprisingly I never felt any muscle fatigue during these rides in A-Fib, but simply ran out of gas at about the 75 mile point when I fell off the lead pack.)

    I have had several hard rides in the week following and feel as though with another month I will be ready to resume racing. FYI, when I do race, I'll ride with 35+/45+ groups for crits rather than with my age group just to push myself.

    I feel great right now as though nothing ever happened.  The next event, provided everything stays normal, will be to discontinue the Rhythmol SR.  However, I’m kind of thinking right now that “if it ain’t broke, don’t fix it”! 
Ed Webb
    (Ed recently wrote that he is off of the Rhythmol SR and in sinus rhythm, but then he was hit by a truck (broken ribs, contusions)! He recovered, is doing fine, and is racing again.) I am feeling better then ever and am thankful that the ablation procedure was a success after all.

    (Ed included the following update 12/29/08.) I took the better part of a year off to swim (went to World Masters Swimming Championships on a lark).  I got back on the bike this past summer only to have my A-Fib problem pop up out of nowhere again in August.  Just like before, it was like you flipped a switch and, voila, I was in A-Fib full time (persistent).  Fortunately, I was able to get in to see my cardiologist within 2 days for another cardioversion.  Four weeks later, I had another ablation procedure (my second and hopefully last).  That was the end of September.  Following the procedure, I didn't do a thing for four weeks and then slowly started getting back into some physical activity.  I started with easy walks and got back on the bike the beginning of November, still taking it very easy.  My first time around, I had a couple of episodes of A-Fib (both required cardioversions to get me out) and I attribute that to trying to do too much too soon (before the scarring had a chance to heal).
    At the end of November my cardiologist cleared me to resume unrestricted physical activity.  As luck would have it, the first week of December I got involved in a big cycling pile up (kind of like a NASCAR wreck) and really screwed up my shoulder and back--nothing broken but painful muscle strains and bruising.  I took 2 weeks off and only began to get back into it right before Christmas.
    So, bottom line, and aside from the lingering aches and bruises (combined with old age!), I'm actually doing great.
Regards,
 

E-mail: Edandlindafll (at) aol.com (the @ is written out as "at" to prevent access by spam mailing lists)

 

bullet Wife and Husband Both with A-Fib
 

Beverly Reynolds – 70 year old grandmother of 4, twin daughters and a son.

    My journey through arrhythmia (Atrial Flutter and then A-Fib) began in the summer of 1996 when I was 60 years young. I was diagnosed with atrial flutter.  Atrial flutter made my heart rate extremely high, and I had difficulty breathing and a tight chest. I was also extremely nervous and sensitive.  As time went on the episodes became closer and closer.  My cardiologist tried many of the antiarrhythmic drugs on me, but I could not tolerate any of them.  I was terribly sick and had hives with Quinidine. Rythmol made my mouth, eyes and sinuses so dry that I had sores in my mouth and finally could hardly swallow food, plus nausea, headaches and my breathing was becoming more difficult each day. Neither of these antiarrhythmic drugs abated the flutter.  Finally, I tried Verapamil to just keep my heart rate down. My body was so overtaxed that my general health was really bad. 
    During this time I had many medical cardioversions and finally several electrical conversions. 
    My cardiologist believed that my flutter came from my having had a pericardiectomy (surgical removal or stripping of part of the Pericardium, the membrane surrounding the heart, to remove calcium deposits) 36 years earlier.  The pericardium had calcified, probably from a virus, and did not allow my heart room to beat properly.

    My insurance company is Kaiser, and during this period Kaiser did not do Pulmonary Vein Radio Frequency ablations. I kept reading about flutter and researching the internet where I found an article about ablation and requested that I be referred to the University of Colorado Medical Center.  My cardiologist was reluctant, but I had run out of options. So, in June 1999 I had a right atrial RF ablation. There were some tough weeks following this six hour procedure (rapid HR, very slow HR and irregular beats), but by September I once again had good BP and a 77 HR.  The university doctors said I was cured!!!

    My next episode with a rapid heart rate began six years later.  This time I was diagnosed with A-Fib in September 2005.  What a disappointment!  However, I was very thankful for the six years of relative good health.  I knew going in that I would not be able to tolerate the antiarrhythmic drugs; but in order to be referred to a clinic that performed PVI ablations for AF, I first had to satisfy Kaiser that my A-Fib could not be controlled with antiarrhythmic drugs.  This time I tried Flecainide, but after a week it gave me a headache that was unbearable.  Finally I was able to take 360 mg of Diltiazem that did not keep me out of A-Fib, but kept my heart rate down.  I also took Coumadin, Digitalis, and Maxide that helped me with the edema, a side effect of the Diltiazem.  I was very symptomatic, and by the beginning of May 2006 I was in persistent A-Fib.  Again I tried a cardioversion, but it only lasted 2 days.

    I started searching the Internet again where I found Steve Ryan’s site, which was a Godsend as it armed me with the information I needed to convince my Kaiser EP doctor to again refer me outside the Kaiser system.  Must comment that my Kaiser EP doctor took a lot of time with me, but was very much against my wish to have a PVI ablation and told me all of the terrible things that could happen during this procedure.  This did bother me, but I kept searching the Internet, received many encouraging emails from Steve and finally picked Dr. Chris Cole in Colorado Springs to do my PVI ablation.  I really wanted to go to Bordeaux, France, but the waiting list is long – as it is most places, and Kaiser will not cover medical expenses outside of the US.  I read and heard many good things about the Cleveland Clinic and a Dr. Natale, but again the wait was too long as I was beginning to feel desperate.  I felt that my heart was getting worse each day.  I was finally able to get the Diltiazem down to 240 mg a day and that really helped the edema.  Dr. Cole worked directly with Dr. Natale in Cleveland before coming to Colorado.  Also, Dr. Cole is on the leading edge of the Cryo-Cath ablation and has begun a two-year study of the Cryo-Cath Balloon catheter.  I was not eligible for this procedure as I was in persistent AF and also have a prolapsed Mitral Valve.
    In September 2006 I was referred and contacted Dr. Cole’s office to scheduled an appointed. He told me that he could definitely improve my A-Fib; but because of the complications I had, he would only give me a 50-60% chance of a cure with the first PVIA, but that I would at least be able to control the A-Fib with medications.  This seemed reasonable to me, and the fact that he said the procedure would only last about 3 hours was the deciding factor for me.  However, I had to wait until December 12, 2006 for the procedure.  Those three months seemed like they lasted forever, because I was losing ground each and every day.  During this waiting period I had many moments of indecision.  The only thing that made me go through with it was I could no longer tolerate the A-Fib.

    Three days before the procedure I stopped taking Coumadin and instead injected myself with Lovenox 60 mg (an anticoagulant) each day. My husband (who also has A-Fib and takes Amiodarone) and I arrived in Colorado Springs from Denver, the afternoon prior to the scheduled procedure.  At 6am on the 12th I was admitted and prepped for the ablation which began at 8 am.  The EP room looks like something from Star Wars with many TV monitors and weird looking equipment everywhere.  I asked to be put to sleep during the procedure.  I was not completely out, but I remember very little until being taken back to my room with all of my family following.  I was in my room by 11:30am.  Dr. Cole did tell my family that he had a hard time getting me back in sinus rhythm and then my HR was only 35.  Also that my heart was scarred from the A-Fib, but hopefully in the next few months it would “remodel” itself.  At first he was concerned that I might need a pacemaker. 
    I was given medication to irritate the heart to see if I would go back into AF.  It did not, but began uncontrollable shaking.  As soon as the medication was discontinued, I was fine except for a very dry mouth, and my HR continued to go up.  About 2 pm, two technicians arrived to pull out the tubes from both sides of my groin.  I also had a tube in my neck and several IVs.  The tubes were about 11 inches long, and then pressure was applied for 15 minutes per side until they were sure I would not bleed.  Then began the long hours I had to lie perfectly flat.  About 10:30 pm I was finally able to sit up a bit and move my legs.  What a relief! I had some bruising where they inserted the tubes.

    Dr. Cole and I had decided to try me on Tikosyn (a newer antiarrhythmic drug – 250 mg twice a day) after the procedure.  This required staying in the hospital an additional two days to monitor the effects of the drug.  The day after the procedure I was feeling tired, but great just being out of A-Fib.  About 9 pm though I began to have tachycardia and was feeling quite uncomfortable with a 120+ HR.  I asked if they could give me something to lower the HR. That was a big mistake!  Also, about this time the hospital staff decided it needed my private room and began moving me to a double room.  Then I was given three different medications for the high HR (Diltiazem, Lopressor and ?)  As I mentioned earlier, I am very sensitive to medications; and, if I had been more lucid, I would not have taken all three drugs.  Very quickly my blood pressure dropped to 40/30 and 35 HR.  I had many nurses working on me trying to get my BP and HR up.  I was given more medications by IV to counteract the prior meds.  Quickly I got very ill and had the dry heaves.  I am not a moaner, but that night I really thought it was curtains for me.  This went on all night, but by morning I was once again recovering.  I do not believe that I ever went into A-Fib during all this time.  When Dr. Cole finally checked on me about 11am, I was doing okay and he decided I could be released that afternoon.  I cannot tell you how relieved I was to leave that hospital (which incidentally was very dirty too.)  I know they over-dosed me, and my roommate confirmed this by saying she heard everything and how concerned they were over my reactions to the medications.  I do not know what all I was given, but I was not a happy camper.   Dr. Cole reviewed my monitoring strips the next morning and thought they were okay.

    1/15/2007 – My one month follow up exam.  Had to wait a couple of extra days because of all the blizzards Colorado is having this winter.  I saw Dr. Cole’s PA.  My electrocardiogram was very good.  I did have some breathing problems earlier (I also have asthma - controlled), so I needed to have a CT scan of my heart and a “Sniff” test – to make sure my diaphragm was not injured during the procedure.  All turned out fine. 
    I have been back on the weight machines (3 times a week for 30 mins.), but get pretty tired out by evening; so I guess I need to cut back to a shorter time and increase exercise gradually.  I tend to forget that my heart was over-taxed for so many months and that it will take time – 6 months to a year.

    My next checkup is in March and I’ll be sending an update.  Meanwhile we are going on a cruise to Hawaii, and I’m sure this will be a complete cure for me!!! 
E-mail: bevrey (at) comcast.net (the @ is written as "at" to prevent access by spam mailing lists)


 

bullet 25 Years in A-Fib

    I am a 69 year old female with a 25 year history of Atrial Fibrillations. During my 25 years of A-Fib I tried at least 10 different heart medications at different times. None of them were any help for my condition.
    I had my first ablation in 2005 in Los Angeles, where I live, performed by Dr. David Cannom. Unfortunately after 24 hours the Atrial Fibrillations returned, and I was terribly disappointed. After the first ablation the attacks were slightly shorter and the distance between episodes was perhaps a little longer. (The A-Fib would occur at least once a week and last about 20 hours.) Before the first ablation, I was used to 3-4 days of heart palpitations which would occur at least once a week.
 
    When the incidents and duration of palpitations began to increase in 2006, I began to think about going to Bordeaux and have Prof. Haïssaguerre or Dr. Jaïs perform a further ablation on me. When I wrote to the office of Dr. Haïssaguerre, I was informed there was a waiting list of 9 months. I put myself on that waiting list and got a date for July 2, 2007.
    In December of 2006 the palpitations became much more severe and longer and finally turned into persistent A-Fib that would not stop. I wrote back to Bordeaux pleading for a sooner date, since my condition had turned worse. My cardiologist, Dr. Mark A. Zatzkis, was very supportive and wrote a letter himself to the office of Dr. Haïssaguerre and Dr. Jaïs. The secretary told me that they might move up the date of the ablation to the end of May, 2007. In the meantime I also explored the possibility of going to the Cleveland Clinic, where Dr. Andrea Natale is quite well known as a skilled ablation-surgeon. But even there the waiting list was 6-12 months.
    Fortunately I received an e-mail from the secretary of Prof. Haïssaguerre and Dr. Jaïs that they had a cancellation date for the 5th of March. I was delighted and immediately accepted that date. I wire-transferred the money (which was not easy since the bank would only make transfers in dollars) and scheduled the necessary trans-esophageal echocardiogram in St. John's Hospital in Santa Monica. It was an uncomfortable but relatively short procedure performed without any sedation (which I had been promised and expected).

      My husband and I left for France on the 2nd of March and arrived in Bordeaux on the 3rd in the afternoon. I had received a list of hotels in the area. We decided to stay in the Holiday Inn which is about one kilometer from the Hôpital Cardiologique du Haut-Lévêque, in an industrial park just outside of Pessac, a suburb of Bordeaux. The hotel is new, clean and comfortable. The staff is very courteous, but not always helpful. It is better to reserve rooms 2 weeks before the arrival. The rates change drastically, as we found out, when you stay there without prior reservations; and business groups frequent the place often filling the relatively small hotel. On Monday the 5th of March I was supposed to check into the hospital between 2-4 p.m.  We made a trial run walking to the hospital to be able to locate the right department in the afternoon. I can only say that i was fortunate to speak French, since very few people (except for Dr. Jaïs and a few interns) spoke any English.
    I did not see Dr. Jaïs (Prof. Haïssaguerre was in Prague at a conference) the day before the ablation, and I made sure I was still awake after being given a sedative by IV to verify that he was there before I was semi-unconscious. The ablation started around 8:15 a.m., and fortunately I was the first patient. Six hours later I was finally in the recovery room in sinus rhythm.

(Following is a technical description of the ablation performed. 
    1. All four Pulmonary Vein openings were ablated to electrically disconnect them from the left atrium. Atrial Fibrillation persisted.
    2. An ablation line was made at the roof of the left atrium connecting both superior Pulmonary Vein openings.
    3. All sites in the left atrium and Coronary Sinus displaying rapid/heterogeneous activity were ablated.
    4. An ablation line was made at the Left Isthmus between the left inferior Pulmonary Vein and Mitral Annulus. At this point Atrial Fibrillation terminated and was transformed to an atrial tachycardia which was mapped to a small re-entrant circuit in the Septum which was successfully ablated.
    All linear lesions were checked for complete block.)

    The recovery room turned out to be the only unpleasant experience, since the young nurses there were unresponsive and unsympathetic. During the long ablation procedure I had been injected with 4.5 liters of water to cool down the tip of the hot catheter. When I kept asking for a bedpan to relieve myself, I was often ignored and told that I did not need it again. I kept asking to be released to my room, since I was perfectly awake: but they kept me there for over two hours. Only when I flagged down a passing doctor and asked him (in French) to release me, was I able to return to my room where my husband and daughter were anxiously waiting. I did not see Dr. Jaïs after the operation that day and not for the next 5 days, since he also went to Prague for a conference. The nursing care on the third floor of the hospital was very good, and all the nurses were friendly and helpful.
    I read in another report of a patient, who also went to the same hospital, that he loved the food there. Well, they must have changed chefs, because i have never had worse food than in that hospital. My husband, who did not stay in the same room with me, even though there were two beds, refused to eat there but was always offered food. The hospital cafeteria is not open to the public, but there is a limited newsstand/snackbar. There is a gourmet lunch restaurant across from one of the sides of the hospital's vast acreage, Le Fleuret.
    After the ablation I felt good and had no pain. I was given anticoagulants in injections and also started to take Coumadin again. Since I had been given Vitamin K during the ablation procedure, it was difficult to build up the Coumadin level. On Friday, after being operated on Tuesday, I was released from the hospital, since that section of the Cardiology Department shuts down on the weekend. The severe cases can stay on the other side of the hall, where they have constant care.
    We went to stay in a hotel in the center of Bordeaux, which is a beautiful city, and I felt good and relieved. My heart beat normally in sinus rhythm. We took a lot of little walks and ate at some wonderful restaurants.

    On the 10th day after the ablation, the A-Fib palpitations returned while I was resting in bed. It was a shock and utter disappointment. Of course it was Friday evening, and the doctor was out of reach. We sent him an e-mail but did not hear from him at the hotel. We cancelled our return flight, which was scheduled for 2 days later. The next day, Saturday, I went in desperation to the department that is open during the weekend. The nurses took an EKG and told me to wait to talk to an intern. He gave me a bets-blocker and told me to come back Monday morning when Dr. Jaïs was expected back.
    On Monday I was at the hospital early and had my blood taken and another EKG, but had to wait to see Dr. Jaïs for four hours. He wanted me to go home for a while and then come back to have an additional ablation. I told him I felt worse than when I arrived in Bordeaux and that I was not going to return home in that condition. He finally agreed to perform another ablation on Friday, March 23, 2007. I checked back into the hospital on Friday morning at 7 a.m. and was the first patient. He took a little more than 2 hours to eliminate another source of A-Fib that had emerged. (Two focal atrial tachycardias were ablated at the left septum and at the base of the Left Atrial Appendage which restored sinus rhythm. There was no reconduction at the Pulmonary Vein openings, and all linear lesions were still completely blocked.) Fortunately they didn't move me to the unpleasant recovery room this time. Dr. Jaïs was pleased, and I stayed for one night in the other section of the Cardiology department. After an additional stay of 3 days at the Holiday Inn, we flew back from Bordeaux to Paris, and the next day back to Los Angeles.
    Unfortunately the airline refused to provide seats from our cancelled return flight despite our pleas that the cancellation was due to an unplanned hospitalization and our willingness to nevertheless pay a cancellation fee. So, we had to buy another roundtrip ticket.
    I was given a lot of injections of Lovenox (an anticoagulant) which I had to administer to myself twice a day. This was very unpleasant and left my stomach area black and blue.
 
    Now I have  been home for almost a week, and it is 12 days after the 2nd ablation. I feel well and free of Atrial Fibrillation.
Gisela Zukor
    (Gisela wrote May 27 that she is still in sinus rhythm. She had one brief hour-long heart racing episode May 3. She took Bisopropol 5 mg (a beta blocker) and hasn't had any problems since then.)
E-mail: zukors (at) verizon.net (the @ is written out at "at" to avoid access from  spam search engines)
    
 
bulletThe Saltman Microwave Mini-Maze Operation For A-Fib (as of 2009 the Saltman Microwave Mini-Maze operation doesn't seem to be currently available)

    This is a record of my life as an A-Fiber. Please do not in any way construe this as advice, as I am not a doctor (legal disclaimer).
    I want to thank you for this forum. My experiences may give insight into A-Fib cases.
History
    I am 58 years old, male, weight 274 lbs. (before operation 284 lbs.).
    I started with Paroxysmal A-Fib in 1994. Large doses of calcium channel blockers like Verapamil would convert me to sinus rhythm from 2-7 hours. A-Fib episodes without medication would go on for 72+ hours.
    In 2004 I was put of dofetilide (Tikosyn) 500 mg daily for 6 weeks by Dr. Steinberg, who then did a PVA at St. Luke’s-Roosevelt Hospital in New York.        
    After the PVA procedure was done, it was discovered that I had Atrial Flutter on top of A-Fib running about 140+ beats. Dr. Steinberg advised that I should have an A-Flutter procedure on the left atrium which would take about 40 minutes (about 5% have Flutter in the left atrium rather than in the right). I had already had an Atrial Flutter ablation procedure in the right atrium in 2002 by Dr. Greenberger at Maimonides in Brooklyn.
    The calcium channel blockers or the Tikosyn had controlled both the Flutter and the A-Fib, but I do not tolerate calcium channel blockers for long periods. They drive my anxiety to very high levels.
    At that time I didn’t have the left Atrial Flutter ablation procedure. I started doing strong exercises on the ROM (Range Of Motion) 4 minute exercise machine (see http://www.4minutegym.com) and---miracle---it stopped the Flutter. I was free from A-Fib and A-Flutter, took no Tikosyn, calcium channel blockers or coumadin for 2 years. In the Summer of 2006, because of a heat wave here in New York, I stopped doing the exercises and went back to having A-Fib and A-Flutter.
    I again went back to using Calcium Channel blockers only when an episode occurred. That usually worked within 2-7 hours. I was put on Tikosyn by Dr. Kirstein at Maimonides 250 mg. 2 times daily. The episodes still broke through and lasted from minutes to 12 hours, particularly when I was in stress.
    I had a Flutter ablation procedure in the right atrium in August, 2007. (I was supposed to have a left Flutter ablation as well; but due to a Stent implant on Plavix, they did only the right side.) The right atrium Flutter ablation failed. They could not find the source.
    In August 2006 while I was in the hospital, I was introduced by Dr. Joshua Kerstein from Maimonides to Dr. Adam Saltman (great guy---he or his staff always gets back promptly on the phone). On February 20, 2007 I had the Saltman Microwave MiniMaze operation at Maimonides Hospital in Brooklyn, NY. It is touted as "minimally invasive"---TRUE. But from my experience, it was more traumatic than all of my three stent procedures, 2 flutter ablations, plus 1 8 hour PVA procedure put together.
    During the operation Dr. Saltman removed my left Atrial Appendage. There were no clots.
Chronicle of Microwave MiniMaze Operation
    Today is February 25, 2007. Here is a chronicle of my Microwave MiniMaze operation on February 20, 2007.
    At 8:30 am I got laughing gas. I woke up around 12:30-!:00 pm in terrible agony. I suffer from Fibromyalgia, and being in an immobile position on a thin gel mattress for so many hours was very painful. (In St. Luke’s hospital they had much more comfortable mattresses.) I strongly believe that in an operating room with over a million dollars of equipment, a BETTER AND MORE COMFORTABLE MATTRESS SHOULD BE PROVIDED.
    I was in the recovery room until about 4:00 pm. It was sheer HELL. Thank G-D Dr. Saltman permitted my son in the recovery room. My son gave me a massage using the reflexology technology on my feet and legs which calmed me down to a bearable condition. (Massage should be mandatory in recovery rooms. It immeasurably helps alleviate the suffering. It relieves the tension and pain, and lets me use less painkillers and anti inflammatory pills which have their own side effects.)
    At 5:00 pm the two drainage tubes were removed from my chest which helped a lot to reduce the suffering.
    I was discharged the following day February 21.
    During the Microwave MiniMaze operation my lungs were partially collapsed. I was given a spirometer. I used it a lot breathing in and also turning it over and blowing strong until I coughed. The first three days I brought up a lot of large clotted blood and tissue.
    On day 3 I did six steps on the ROM machine, then the next days I was able to do 12, 20, 22, 26, 37 and 40. That’s where I am up to now. But I do feel very beat up. It was major surgery.
    The wounds are closing. The left drainage hole is closing a bit faster than the right. I do feel inside of me burning pain in different locations of the chest.
    Last night I had a bad A-Fib episode which lasted a few hours. It drained me.
    Today my son gave me a full body massage which really calmed me down. I had another A-Fib episode which lasted about two hours. My A-Fib and A-Flutter feel stronger, longer and worse than before, but I was forewarned by Dr. Saltman that it may take up to 3 months for the scar tissue to settle. As of now it is still raw.
Why I Chose to Have a MiniMaze Operation
    Here is my reasoning for getting the Saltman Microwave MiniMaze operation.
    I had A-Fib, A-Flutter, missed beats, and extra beats which all come from different areas of the heart. I tackled the A-Fib with a PVA by Dr. Steinberg which worked for two years. I still had to contend with Flutter which I managed with strong exercise. When the Flutter and A-Fib returned, I tried a right side Flutter ablation which failed. So, I was back to square one. Now I had to consider:
    1. quality of life
    2. risk of stroke
    There are 75,000 strokes from A-Fib in the US. In my case I was getting older and at increased risk of stroke from A-Fib. My logic was to get rid of the stroke factor by having my left Atrial Appendage removed. 95% of clots originate in the left Atrial Appendage. Also, I do not tolerate coumadin. Removing my left Atrial appendage means SUCCESS in my book.
    With G-D’s help I hope the rhythm will also be normalized as time goes by.
    My thanks to all the wonderful doctors, nurses, pa’s, and sheet changers in the hospital; your smiles and kind words do make a difference. Thank you and may G-D bless you all.
Shloime (E-mail address: shl (at) orshulim.com---the @ is written at "at" to prevent access by spam mailing lists)

 
bullet International Traveler/Scuba Diver Dizzy and Fainting from A-Fib

    I am 59 years of age. I first became aware of my A-Fib problem by chance in 2001. I went to have a medical for life insurance. I was wired up to the exercise bicycle, but immobile, waiting for the cardiologist to arrive when I noticed that the monitor read a heart rate of 170. I indicated to the technician who was there that I thought the machine was faulty. He turned white when he saw the readout! I had felt nothing.
    I had always done a lot of sports and had a normal resting pulse of around 45  bpm. As I got older I continued with regular exercise in the gym, walking and my passions, scuba diving and horse riding. I had done nearly a 1000 dives, traveling all over the world to dive intensively.
    In retrospect, following an extremely bad dose of influenza in 1998 when I needed to call the doctor because of dizziness, I had noticed some shortness of breath from time to time and also some tiredness. However, I had just come through a very difficult time both in business and with family issues and put my feelings down to stress. In fact exercise helped me considerably.
    Following the initial discovery of the A-Fib, I was put on a course of Statins for my cholesterol and a 50 mg per day dose of Flecainide. This seemed to do the trick, and my heart beat remained well controlled. When in fact it did get out of hand, a short run seemed to settle it back quickly.

    At the end of 2004 we left the UK to live in Mallorca, an island in the Mediterranean. I had by then semi-retired and was feeling much more relaxed. Other than the issues of completing the renovation of the house we had bought I had very little stress and was feeling pretty happy with life. I preferred the climate to the UK, and Mallorca reminded me of my home town Cape Town in South Africa. I also had the sea close to hand. At the beginning of 2005 I began to be very conscious of the A-Fib really for the first time. It occurred more frequently and the incidents were for longer periods. I also began to have frequent dizzy spells, something that I had not had since my influenza attack. My cardiologist in the UK had retired, so I sought the advice of a local cardiologist in Mallorca. After being hospitalized following a particularly bad attack, the cardiologist added to my drugs a Beta blocker; but as I later found out to my cost, without taking me off the Flecainide. The result over the next few months was disastrous. I kept having very serious dizzy spells and in one case blacked out completely while walking down the isle of the aircraft I was traveling on.
    As a result of this I was referred to an electro physiologist who worked at San Pau hospital in Barcelona, Spain but who visited Mallorca every month. He had a serious lack of bedside manner and was extremely arrogant in his dealings with me. To his credit he immediately took me off the Beta blocker and determined after some months that the cause of my fainting and dizziness was my abnormally slow normal heart beat aggravated by the Beta Blocker. What was happening was that after fibrillation and before the commencement of sinus rhythm, the drugs were causing my heart to beat even slower or to pause in between the move from A-Fib to sinus rhythm.
    He felt that alternative drug therapy would be counterproductive and in a dismissive tone told me to go to Bordeaux or Milan for treatment, and dismissed me. This seemed to me ludicrous at the time. Surely the USA or UK were the centers of excellence for heart related treatment?
    When I later tried to make contact with him to discuss the matter further, he never answered or returned my calls. I was left hanging. The result was that I decided to do my own investigation into the matter. What I found out was that for my particular problem it seemed that Bordeaux and Milan were indeed using the latest methods, with particular success in Bordeaux. My research was significantly helped by the information available on this web site and the email exchange I had with Steve Ryan.

    I sought advice from a family member who was a retired cardiologist in South Africa; I sought a second opinion through London College’s The Heart Hospital and saw the leading electro physiologist there. All spoke highly of the work and reputation of Bordeaux in particular, and said they were undoubtedly the leaders in the field today.

    I made contact with both Milan and with Bordeaux.  Milan was extremely tardy in the way it responded (if they responded at all), whereas Bordeaux was very diligent and helpful in all ways. I spoke on the phone and had numerous emails with Dr Pierre Jaïs, who was helpful in every possible way. After again deliberating with family and doctors I decided to opt for Bordeaux, and what a great decision that was!

    I had to wait six months to get a place (it is a state hospital and treatment of private foreign patients is limited).
    The documentation I received from the Bordeaux hospital setting out all the actions I had to take before the operation, e.g. course of Warfarin, tests etc. was extremely clear and precise. They provided a full packet of information on what I could expect at the hospital, what accommodations were available etc. In fact they could not have been more helpful.
    We flew to Bordeaux the day before the operation. I checked my wife into a hotel (an old winery) set in the middle of the vineyards about 20 min from the hospital and then proceeded to check in. I used to speak French, but since learning Spanish seemed unable to get a French word out of my mouth. The registration staff was very helpful, the nurses even more so. Their explanations of what needed to be done to prepare me for the next day were clear (some spoke broken English but one reasonable Spanish which helped communications). Dr Jaïs who spoke English came to introduce himself and told me that the operation would take place the next day and that I was number two on a list of three for that day. Naturally I was apprehensive and maybe because of that was in pretty permanent A-Fib.

    The next day I waited in my room only to be told that patient number one’s operation was taking longer than anticipated… in the end it took 8 hours! This definitely made me even more apprehensive, and as a result I was in permanent A-Fib.
    I need not have bothered. When I finally went down to this strange operating theatre with one nurse, 4 TV monitors hanging over the table and three doctors (one with the catheter and two behind a glass screen on computers), it was a piece of cake. Although Dr. Jaïs subsequently told my wife that I had had quite considerable pain during the procedure particularly when they were repairing the flutter, I remember nothing other than a slight discomfort and pressure near the end of the procedure (when, as it turned out, they were dealing with the flutter). And for the first time ever I was not sick or hung over from the aesthetic, nor did I have any discomfort at all after the operation other than a slight tight feeling in the chest which they had told me to expect and which disappeared after a week.

    The procedure took six hours. They advised me that the mapping of the heart which they do before correcting the “short circuits” was made easier by the fact that I was in A-Fib. They had been successful with the A-Fib, but it had been more difficult dealing with the flutter; although they were hopeful that it was corrected as well.

    The next day I could not believe how little after-effect the operation had had on me. My heart beat was stable at about 80 bpm. The following day I had my exercise test which went well; and on the third day I returned home, much relieved that all had been so easy.

    I followed rigorously the schedule they had given me, gradually lengthening my daily walks; and after four weeks I increased my activities back to horse riding and aerobic and strengthening exercise. After three weeks my resting heart beat was a steady 70-72 bpm. After 6 weeks I was back scuba diving.

    I cannot stress sufficiently how impressed I was with the professionalism and helpfulness of the team in Bordeaux, or how successful the treatment has been for me. I would recommend it whole heartedly to anyone in my predicament.

    Finally my thanks to this website and to Steve Ryan whose information was crucial in getting me to make the correct decision.

Michael Waring
Palma de Mallorca, Spain
September, 2006
michael-waring (at) msn.com (the "@" is written out at "at" to prevent access by spam mailing lists)

bullet Cured at the Cleveland Clinic

Steve asked me if I would write about my ablation with Dr. Natale. I am honored to do so, because Steve's site was the first I found on the net after I was diagnosed with A-Fib. His description of his own ablation in France, and the excellent information he gave, as well as links to other websites, were very helpful to me.

I was diagnosed with A-Fib on October 23, 2001 at age 51. The trigger for me was the events of September 11. I had a very bad anxiety reaction to those events---not helped at all by the fact that my husband had left the evening of Sept.10 for a business trip to Europe, and couldn't get back for some time. I started having episodes of breathlessness and a pounding heart. I thought I was having panic attacks. Most people who know me well would describe me as being a strong person, and I have always thought of myself as a person who could handle crises without becoming unglued. So, stupidly, I waited until my scheduled check-up appointment with my PCP, Dr. D. in October. Meanwhile, I tried to exercise myself out of these "panic attacks". I went to work as usual, did all my normal activities, but I knew I was in trouble.

When I went for my appointment with Dr. D in October, I didn't want to tell him about the symptoms I had been having, because my husband and I were planning on leaving the following day for a relaxing road trip through Vermont, and I desperately wanted to go on that trip. For some reason, he took one look at me, and checked my pulse rate. It was too high for him to count. He listened to my chest and said, "You are in atrial fibrillation. Can't you feel that?" An EKG confirmed the A-Fib, and I had to come clean about the symptoms I had been having.

He sent me directly to the hospital to be admitted by a cardiologist he knew, Joseph Pennington here in Wilmington, DE. Dr. P turned out to be a young cardiologist who had only been in private practice for two years, after completing his EP fellowship with Frank Marchlinski at the University of PA. Dr. P has taken excellent care of me ever since.

My heart rate was over 200 bpm in the ER. Dr. P put me on Cardizem and heparin drips, and ordered the normal tests, echo, nuclear stress test, blood work. Everything checked out well, except for some enlargement of my left atrium. He offered to do a TEE and cardioversion before I left the hospital, but I just couldn't get my mind around all of that. I needed time to think. So I went on Coumadin, to be cardioverted a few weeks later.

Two cardioversions in the month of December only lasted for a few days. So I went back to the hospital to start sotalol. Dr. P tried sotalol first, because I was having a problem keeping my heart rate down. After two days in the hospital and a number of doses of sotalol failed to convert me, my EP performed another cardioversion before I was discharged. This CV only kept me in sinus rhythm for a few hours. But I kept taking the sotalol; and within 10 day, I was converting on my own.

To make a long story short, Sotalol kept me in NSR only a few days out of a week. I was grateful even for that, but I felt like a zombie on Sotalol. We tried Rythmol, which seemed to make me worse and caused severe GI distress. I then went off all drugs except Coumadin for a period of about 6 months and had an episode only 3 or 4 times a month. When my episodes and heart rate started to increase again, we tried flecainide in March of 2003, and that worked best for me. Unfortunately, I developed A-Flutter in late 2003, probably caused by the flecainide, and my EP performed a successful right sided A-Flutter ablation in October of 2003.

But despite the drugs, I never went without an A-Fib episode for longer than two weeks.

Fortunately for me, My EP had been trained to do PVIs during his fellowship with Dr. Marchlinski. He and another former fellow were the first to do them here in Delaware. He had only done 10 in private practice the day I met him. He told me that I was an excellent candidate for the procedure which, he said was new and revolutionary, but not experimental. And he offered to do one for me. His success rate then was 60%, that is 6 out of his 10 patients were cured, and he described each one of them to me. Or, he said, you can go up to Penn and have it done by Dr. Marchlinski.

I decided to go for a consult with Dr. M. in March of 2003. He agreed that I was an excellent candidate, and I got on his list.

Meanwhile, I had found my way onto these A-Fib websites. I was primarily interested in hearing about who had gone for an ablation and where, and who was having success. Not a lot of people were going for ablations back then, but the name that kept coming up was Andrea Natale at the Cleveland Clinic.

I talked this over with Dr. P. He suggested that I might also want to check out Dr. Morady in Michigan, who was having a lot of success with the Pappone procedure. But Dr. Morady was out of network with my insurance company. But I did go down to Baltimore to see Dr. Calkins, who was doing the same Pappone procedure.

But before I went to see Dr. Calkins, I went for a consult with Dr. Natale. Dr. P had written letters with my history to all three of these doctors. Dr. Natale walked into the exam room, and the first thing he said to me was, I am so sorry for your long struggle with atrial fibrillation. My husband was in the room, also Dr. Natale's nurse, Christina, with whom I had talked at length just before. But Dr. Natale never took his eyes off mine, as he answered all of my questions and described his procedure. He called it a pulmonary vein antrum isolation, a PVAI. He stayed far enough away from the openings of the pulmonary veins to try to avoid pulmonary vein stenosis, that is constricture or narrowing of the  pulmonary vein.  He told me he had done over 1000 ( I later learned that he had done over 2000), and that he did 3 per day, every day. He told me that he would be happy to do an ablation for me if  I was agreeable, and I said yes. I went for an echo while I was there, and it showed my left atrium measurement at 5.0. I was worried about this, having heard that the size of the left atrium was a factor in the success of the ablation, and I emailed Christina. She told me, we don't just measure the diameter, we also measure volume (and another measurement that I don't remember), as well as your overall health, and you are well within our parameters.

I did go and see Dr. Calkins. I liked him, but he told me that he had only done 300 A-Fib ablations total. That was in July of 2004. He told me that I should go on amiodarone immediately to prevent any further remodeling of my heart, and he even wrote me a prescription for amiodarone, which I never filled.

I went and talked all of this over with Dr. P, who agreed with me that Dr. Natale was the one to go to.

That was in July 2004.  Fast forward to February 14th, 2005. A very cold and rainy Valentine's Day when we arrived back in Cleveland for my ablation the next day. Soon after we had checked into the Intercontinental Hotel and Conference Center, I received a call from the A-Fib nurse telling me that I would be the first case the following day, and that I would need to check in at 6 am the next morning at the Heart Center. My husband and I were very tired, but went out anyway for a very nice meal at the historic Chop House in downtown Cleveland.

I didn't sleep very much that night, but was quickly processed through at the Heart Center in the morning. I got up onto the table in the EP lab at 7:30 am as scheduled. All of the nurses and techs came in to introduce themselves to me and explained what would happen to me. My nurse/anesthetist, Eric, told me what to expect with the conscious sedation. Dr. Sergio Thai, who was  Dr. Natale's fellow and assistant that day, also came in to introduce himself. And then we got underway.

I was somewhat surprised to find myself sedated, yet awake and aware. Dr. Natale had told me that he would be in for the ablating only, so I was surprised to see him come in early, and he put my catheters in himself.  Very quickly, it seemed to me, they started the ablating. Dr. Thai and Dr. Natale worked very quickly and quietly together. At some point, I went into A-Fib and they were not able to cardiovert me out of it. But they continued with my procedure, now on my beating and fibrillating heart. Eric kept telling me to breathe shallowly during the ablating, because my deep breathing would make it more difficult for the docs to manipulate the catheters. I did my best to comply, but kept falling asleep. And Eric kept waking me up.

Finally, it was done and I was allowed to sleep. I woke up when the nurses were putting pressure on the catheter sites at the femoral veins. I was transferred to the recovery area and had to lie on my back and keep my legs straight and still for six hours. I slept through most of that. I did not have to have a Foley catheter for the procedure, but I did need to use the bedpan towards the end, but that was not nearly the ordeal I thought it would be.

I was soon transferred to a very nice newly renovated room, where I spent the night. Once the six hours were up, my nurses removed the pressure bandage at the groin catheter sites. My nurse told me she could see nothing but three tiny pinpricks, no bruising, no bleeding. I was then able to be up and around. My nurses checked on me very frequently, and they all seemed to be so happy for me. The monitor over my bed registered nothing but strong NSR. I was discharged early the next morning, just after breakfast.

I was discharged with a trans-telephonic monitor with which I could transmit my ECGs directly to the nurses and doctors at the CC. In the first four weeks post ablation, I had 3 to 4 episodes of A-Fib, then some episodes of PACs during the  following 2 weeks, then nothing but wonderful normal sinus rhythm to this day.

I went back to Cleveland for my follow-up in June of 2005. I had a number of tests. Blood work, an EKG, an Echocardiogram, a chest CT scan. All tests results were very good, no pulmonary vein stenosis, and my left atrium had shrunk, for lack of a better word, back to 4.2, with more shrinkage expected.

I am fully back to my life now. About a year ago, I joined a gym, hired a personal trainer for a couple months, and have been working out ever since. Because my CT scan at the CC showed some plaque in my coronary arteries, my EP sent me for a nuclear stress test last January, which I passed with flying colors and an ejection fraction of 70%.

I am very grateful to Dr. Natale and his team for my successful procedure. Dr. Natale told me at my follow-up that he did not think that I would ever have A-Fib again. He told me at that time that he had only had 14 late recurrences out of the thousands he had done.

But I am also very grateful to my own EP, Dr. Pennington. He gave me hope at the very beginning when I was so frightened. Hope that there was a cure for me. He pretty much single-handedly pulled me through 3 and a half years of very symptomatic A-Fib and kept me functioning to the point that I was able to go to work every day. And even go on some far away vacations, to Hawaii and the Caribbean.

I am almost 56 now, and I am feeling great. I have and will continue to recommend to anyone that they should go to Dr. Natale, if they are considering an ablation. Dr. Natale now thinks that ablation can be the first order of treatment in certain patients.

It remains a mystery to me why people continue to go for ablations with inexperienced EPs and sometimes have disastrous consequences, when many of them could have gone to Dr. Natale, just as I did.

My very best to any of you who may have been recently diagnosed and are looking for some answers. This site is a terrific place to start.

(Dr. Natale has moved to Texas Cardiac Arrhythmia in Austin.)

Susan, SRichards(at)GABLAWDE.com (the "@" is written as "at" to prevent access by automated spam mailing lists).

 
bullet Toxic Effects of Amiodarone

    My father, a retired Obstetrician, woke up on January 1 2004, his 69th Birthday, with a temperature of 100 degrees, general malaise, and sore throat.  Typical symptoms of the cold that was going around at the Holidays.  He stayed in bed and missed his Birthday Party. He felt a little better on the 2nd. On January 3, our nightmare began as a family; my Dad was short of breath and thought that he might have pneumonia. My mom, his wife of 47 years, took him to the urgent care clinic. He had a Chest X-ray and was immediately admitted to the Hospital, with an initial diagnosis of bilateral pneumonia. On January 4, he was transferred to ICU (Intensive Care Unit). He did not respond to antibiotics within 24-48 hours, and his Cardiologist and Pulmonologist put their heads together and feared that he was suffering from Amiodarone Pulmonary Toxicity. He had a lung biopsy shortly thereafter that confirmed their diagnosis.
    My Dad had been on Amiodarone 200mg once a day for 10 months, post ablation for chronic atrial fibrillation. He had no previous lung disease or open-heart surgery.
    He complained of a dry cough for 2-3 months. His primary care doctor thought it was ENT (Ear Nose Throat) related, and referred him to the ENT. The ENT thought it was GI (Gastrointestinal) related and sent him to GI. He never made it to that appointment, as he was in ICU.
    My Father had a normal CT scan of the lungs in the middle of Oct. 2003... Just 8 weeks later, fatal lung damage from Amiodarone.
    His condition continued to get worse.  He was put on a ventilator on January 18, 2004, which he was unable to tolerate.
    He had to be put on a drug to paralyze him, in order to tolerate being on the ventilator.  His lungs were so severely damaged that they had to force as much oxygen to his lungs as possible, which no one could tolerate without being paralyzed. We had heard that it was like sticking your head out of a moving vehicle traveling 65 miles/hour and trying to breath out of a straw. Could you imagine what my father must have felt?  5 Children and a wife of 47 years, watched over him for 49 days, as his condition deteriorated, and Never improved.
    The half-life of this drug is so dangerous.  Once toxicity was diagnosed, it didn't matter that the drug was stopped as it continued to do damage. Steroids did not improve his condition at all.
    It appears that most literature I have read, states concerns with doses over 300mg/day.  Well, here is a case where a patient was only on 200mg/day for 10 months, and ended up with Fatal Pulmonary Toxicity.  In addition, they underplay the need for close monitoring of the lung status of patients on Amiodarone.  They absolutely need to come up with a new protocol, monitoring lung function much more frequently than every    3-6months. A chest x-ray, had it been done even 8 weeks prior to this event, would not have clued anyone into the fact that he was developing Pulmonary Toxicity. He had a CT scan, which was Normal. 
    My father passed away, after 7 weeks in ICU, on February 20, 2004.
    Please, do what ever you can to put stronger warnings out, and push the drug companies to "red label" prescriptions, "If a cough or flu symptoms develop, contact your Physician Immediately!  These can be signs of Pulmonary Toxicity, which can be Fatal, if left untreated."
    I feel that many patients are dying of “pneumonia,” because once they wake up unable to breathe, which happens suddenly, they go to the Hospital and are so unstable that a lung biopsy cannot be performed.  Therefore, I feel that the Doctors are missing that it is really the Amiodarone.
    In addition, I think patients should be required to sign a consent form, notifying them of the warnings.
    Further, more needs to be done in the Medical Community to educate Primary Care Physicians of the severe effects of some drugs.
    Red warning labels should be put on the Patients Medical Chart.
    We experienced first hand, the very slight symptoms of Amiodarone Pulmonary Toxicity.  My Dad's symptoms went unnoticed by him, a Physician, as they were so minor. He thought he had developed allergies, or that our air was too dry, and thus the dry cough.  He had no other symptoms that would have caused any alarm. Just 2 days prior to be hospitalized he enjoyed a wine tasting gondola cruise through the marina in Long Beach with his entire family. He was running around, getting in out of the boat just fine, no Shortness of Breath.  I lived with him, and he presented NO symptoms of concern. He was filled with energy and life, just 2 days before being hospitalized.
    My Dad was a very strong man.  He had undergone many procedures and surgeries throughout his life. He was strong and got through it all, not Amiodarone. His death certificate read, “Accidental death due to Amiodarone Induced Pulmonary Toxicity."  My Daddy died from an “accident”. Whose accident?   That is why this drug is such a concern.
    Thank you for the opportunity to write my story. 
Karen Muccino, karenmuccino (at) yahoo.com. (The @ is written out as "at" to prevent access by spam mailing lists.
 

bullet

Marathon Runner’s Atrial Fibrillation Story

I have probably averaged in the range of 1500 to 2000 miles a year for the last 20 years. In 2002, I began to notice that sometimes I seemed to be in severe oxygen debt when running. One of the first pieces of advice that we get when we start participating as distance runners is “listen to your body”, but since I was in generally good health I first tried blaming it on going out too fast. Then I tried to convince myself that I was out of shape and needed to work harder. I began to sometimes fall apart, sometimes needing to walk during races; so I decided that age was slowing me down more than the average person.

I started using a heart rate monitor after my daughter got me one for Christmas. When it registered rates of 225 to 250 during some of my workouts, I decided it was obviously defective. So I sent it back. When I got it back, not only did it still register these absurdly high readings; but it also seemed to do it almost every run now. So I sent it back again. Worse yet, it still did the same thing after it came back the second time. Then I started wearing a contact lens so that I could watch it during my run instead of just getting a read out at the end of the workout. I discovered a funny coincidence. The monitor would be rolling along at rates in the 130 to 145 range for a while, then suddenly jump up over 200 shortly before I would begin to feel the oxygen debt set in.

At this point, now the beginning of summer 2003, I finally decided to listen to my body and go see a cardiologist. Unlike many people with Atrial Fibrillation, mine would subside on its own when I stopped running. It got progressively worse during the summer, with me going into A-fib about 4 out of every 5 runs. It was obvious that I had to do something, and I feared that maybe I would have to give up running. Like many other people that I’ve read about on the internet, I didn't know if drugs would work and didn't want to take them for the rest of my life anyway. I was referred to Loyola Medical Center in Chicago. And on August 29, 2003 I had a Radiofrequency Catheter Ablation, which took about 8 hours in my case. The following Wednesday, only 5 days later, I did some light jogging (11 to 12 minutes/mile). Over the next few months, I gradually increased both the duration and pace. In November, I took my heart "on a test drive", running a 10K in 46 minutes and a couple weeks later a 5k in 22 minutes. Both races were full throttle and while the times were not great, they were respectable for a 54-year-old male. By far, the most important thing was that there were no high spikes in my heart rate.
    Since then I've had my check for stenosis, and Dr. Lin thinks I'm cured. He told me to simply take myself off the low dose of Toprol and the Coumadin after 6 months, so I’m now off the drugs. On January 10, while still on the medication, I completed my 49th marathon in 3:44 with no problems, this less than 4.5 months after the procedure. A couple of weeks after stopping the medications, I finished my 50th marathon at Catalina Island, up and down mountains, again with no problems! While every case is different and there are some minimal risks, the ablation procedure has certainly worked for me. If anyone would like more information you can email me at jallanach(at)att.net  (the @ is written as "at" in order to prevent access by spam mailing lists). .
    Jerry
 

bulletIf You are a Moderate to Heavy Drinker, this Story may be Important to You. Epsom Salts Cure. Magnesium and Potassium Supplements.

    I would like to pass on the following story in the hope that it may help someone else that contacts your web site.
    I first experienced A-Fib in the spring of 1999.  After stopping in at an urgent care facility, they sent me by ambulance to the emergency room where the A-Fib was stopped with Corvert.  The hospital staff informed me that it was probably my heavy drinking that caused the episode, so I stopped drinking for 3 years with no more A-Fib occurrences. 
    Eventually, I started drinking again and the A-Fib returned after a few months.  Spring and Summer of 2003 saw me in the ER twice and both times Corvert did the job.  They also placed me on Cardizem for A-Fib and high blood pressure.  Soon after the second episode I lost insurance coverage, and it was only a few days before the A-Fib started again.  After 18 hours of being in A-Fib, I decided to search the internet for answers and resigned myself to go to the ER if nothing was found.  One of the stories I read mentioned that a bath in a magnesium solution was prescribed by one woman's doctor.  Remembering that Epsom salt is magnesium sulfate, I decided to take an Epsom salt bath and the A-Fib stopped within 20 minutes.  Once again, this was after being in A-Fib for 18 hours.
    Since then I started taking a magnesium and potassium supplement every day and also take an Epsom salt bath every one to two weeks, and the A-Fib episodes have completely stopped.  I used to get little 10 to 30 second episodes every day but not any more.  I even continued drinking heavily for a while after this and even stopped the Cardizem (bad side effects) and still experienced zero symptoms.
    I honestly believe that my A-Fib was caused by excessive sweating and dehydration (from the alcohol) which disrupted the mineral balance.
    I would like to share this with as many people as possible but I'm not sure how.  Please feel free to post it wherever you think it would do the most good.
    Otis Price
    odprice(at)netzero.net (the "@" is written as "at" to avoid access by spam mailing lists)
    Albuquerque, NM

    Also, James Adams shares a similar experience, "I recently found that by daily eating a banana, drinking a glass of milk, and taking 500 mg of Magnesium, my PVCs have disappeared, and I do not suffer from A-Fib. I am episode free for over a year" (written in 2005).
    (James Adams wrote an update in Feb., 2009.) I have been AF free since 2004, but suffered from PVC's, sometimes 20 - 30 PVC's per minute. I increased my magnesium supplements to 1000mg per day, with intermittent success.
    I found through genetic testing, that my body is genetically predisposed to a blood disorder that affects clotting. My body is inefficient at folic acid and vitamin B-12 absorption, so at the advice of a geneticist, I added 86mg aspirin, 1000mcg folic acid, and 1000mcg vitamin B-12 to the magnesium supplements. Not only have I been AF free, but all of my PVC's have disappeared. I no longer consider myself predisposed to AF and have not had a PVC in months. My energy has increased and I feel back to normal.
    There is one more thing that I think may have contributed to the PVC's. The magnesium I was taking was sold at a large US retailer, and was manufactured in China. The geneticist warned me about contaminated, substandard supplements originating in China. I noticed a significant difference when I switched to a magnesium supplement made by GNC in the United States. I don't know if the Chinese supplements were contaminated or their strength was compromised, but I now take only supplements from GNC manufactured in the states. I also found I no longer need to eat bananas to remain PVC and AF free. I don't think GNC is the only manufacturer of high quality supplements, but I would recommend supplements manufactured in a country with stringent quality requirements.   
James Adams
jadams (at) jgadams.net (the "@" is written out as "at" to prevent access by automated spam search engines)

 
bullet Water Cure

    I realized that the symptoms of A-Fib became more easily recognized with each A-Fib event. I would work backwards from an event and recall what food or situation might have set things off.
    While at the movies and loving popcorn I had an A-Fib attack, probably due to the heavy salted popcorn during the movie.  I left the movie, asked for a cup and went to the water fountain in the theatre lobby. After about 10 or 15 cups of water and a time period of about 30 minutes...the A-Fib settled back to normal!
    After that experience, I started drinking lots and lots of water (as much as 2 quarts OR MORE) whenever I felt the sensation of A-Fib starting. It usually takes at least 30 minutes for the A-Fib to subside. I sometimes use a "Heart Rate Monitor" which can be purchased at a sporting goods store.  The monitor strap goes around your chest, and the watch type readout fits the wrist. When the readout jumps around, this indicates irregular heartbeat  
    My feeling is that water works by helping the body "stay in balance" with its chemistry. This is especially important if drinking alcohol, during hot weather, on a windy golf course, or in any exercise without lots of water.
    This method works for me, and I hope it works for you. Let's just call this the "Gomez Maneuver."
    If you have any questions, you can reach me at Email gomezron(at)aol.com (the "@" is written as "at" to prevent access by spam search engines). Good luck!

 
bulletEarl Tyler and his Wife, Flo Hopkins, tell how he was Cured of Persistent A-Fib. Earl Shares his Story, then Flo Tells What it was Like From Her Point of View.

Successful A-Fib Ablation

Earl Tyler’s story

In November of 2002 I had just turned 54 & was in great health as far as I knew.  I had been running & cycling for 8 or 9 years, including 10 marathons. I cycled sometimes as much as 200 miles in a weekend.  In general, I felt great.  But there had been a few occasions in the previous couple of years when I had not felt so good.  There had been a few times when I went out for an easy run but just had no energy.  I chalked it up to over-training, took a day off, & forgot about it.  There had also been a couple of occasions when I felt a bit light-headed at work.  I went to the local med center where they found nothing.  My heart rate was in the 80's which they said was normal, even though I told them my resting heart rate was usually in the low 50's.

Then, on the day before Thanksgiving, I had another light-headed episode which was somewhat more severe.  I called my family doctor who told me to come to his office immediately.  An EKG revealed that I was in A-Fib.  I was sent to the hospital where I spontaneously converted to sinus rhythm before my admission was completed.  I was sent home & scheduled for a thallium stress test in 2 weeks. 

I knew nothing about A-Fib at this point, but tended to believe that it was probably a transitory thing that would not have any lasting effect on my life.  I was just too healthy, I thought, to have any serious heart problems.

In 2 weeks I had the stress test & everything looked fine until after the test had been completed & the technicians were starting to remove the electrodes.  At that point I went back into A-Fib & was sent back to the hospital.  This time I was converted with Corvert.  That was the beginning of a string of 12 hospitalizations over the next 4 months.  I was converted with Corvert several more times & with an electronic defibrillator on 2 occasions.  During this time I was prescribed a wide variety of antiarrhythmic drugs, none of which were effective.  I was beginning to understand the truth about A-Fib: it can have a severe impact on one’s lifestyle.

I consulted with the local cardiac electrophysiologist who recommended flutter ablation (right atrium only) with continuous medication to moderate the fibrillation to flutter.  This was not particularly appealing to me since I did not like the effects of the drugs I had been taking.  I wanted to get back to my active lifestyle, & to me this meant getting off medications. 

Meanwhile my wife & I had been searching the Internet to find  as much about A-Fib as we could.  A-Fib.com provided us with the most comprehensive source of information, especially about physicians who perform ablation procedures.  As soon as I learned about catheter ablation, I believed that this was the treatment for me.  My local cardiologist & electrophysiologist recommended against it, saying that the procedure was too experimental & that I was not an appropriate candidate.

By March of 2003 I was in persistent A-Fib, & no further attempts were made to convert me to sinus rhythm.  I communicated with several of the physicians listed at A-Fib.com, & decided that Dr. Andrea Natale at the Cleveland Clinic was my first choice.  I visited the Cleveland Clinic in March & was scheduled for an ablation in October.  I went home & tried to wait patiently, still in A-Fib.  But my quality of life had deteriorated enough to make me impatient to get the ablation done sooner.  When I pleaded my case to the Cleveland Clinic, I was offered a July ablation date with Dr. Walid Saliba; I accepted.

It seemed like an eternity, but July finally arrived, & I went to Cleveland.  Dr. Saliba performed the procedure assisted by Dr. Khajkin, a fellow.  I was awake during much of the 6.5 hour procedure & aware that Dr. Natale, the department head, was called in for consultation more than once during the procedure.  I did not know whether to be glad that he was available, or worried that he was needed. The procedure was not painful at all, but I would describe it as uncomfortable.  I was extremely hot & drenched in sweat because of the lead blanket used to protect me from the X-ray which was used to guide the catheters.  I could not feel the catheters at all except when the doctors called for RF energy to be applied.  Then I could feel a slow warming in my chest which stopped before it actually felt hot. 

After the procedure Dr. Saliba said that it had been a difficult procedure, but everything went fine.  They performed circumferential ablation around all 4 pulmonary veins as well as focal point ablation at several other points.

I was allowed to get out of bed after about 6 hours of recuperation.  I felt some tightness in my chest, & some minor discomfort at the sites of the catheter insertions.  But I was elated to be back in sinus rhythm for the first time in over 4 months.  I was released from the hospital the next day, & went home the following day.  I was still feeling some tightness in my chest & shortness of breath, but I understood that this was to be expected immediately after the procedure.  I had been told that I could expect to return to normal activities after 48 hours.  I knew that running was not considered to be a “normal activity” so I did not expect to resume that for a while yet. 

After 72 hours, however, I was still feeling pronounced shortness of breath with mild exertion, like climbing a flight of stairs.  This frightened me, so I made an appointment to return to Cleveland to get checked out.  They found no problems & suggested that I give it more time.  Within 2 weeks I felt substantially improved, & in 3 weeks I was ready to return to light exercise.  In retrospect, I believe that my procedure may have been somewhat more extensive than the norm, requiring proportionately greater time for recovery.

I started biking again about 3.5 weeks after the procedure.  After biking one day I experienced a brief (1 hour) A-Fib episode, but this did not recur.  I continued to take Rythmol for 60 days after the ablation.  Just after the Rythmol was discontinued, I set out on a 10 mile run.  After about 2.5 miles my heart rate jumped suddenly from about 120 to 160 (I was wearing a heart rate monitor).  This lasted 15 or 20 seconds & returned to normal after walking a few paces.  This sequence repeated itself 3 times within the space of about 5 minutes.  After that I completed the 10 miles with no further problems.  Since that time I have been in normal sinus rhythm with a full exercise schedule.

In October I returned to the Cleveland Clinic for one final visit, the primary purpose being a catscan to check for pulmonary vein stenosis.  No problems were detected & I was unconditionally released.  Dr. Saliba said that the success rate of A-Fib ablations has increased dramatically in the past 2 years.  I suspect that this is true primarily at facilities like the Cleveland Clinic that perform a lot of the procedures.  Dr. Saliba also reminded me that there are no studies yet on the long-term effects of A-Fib ablations, since the procedure is still quite new.  We don’t really know what to expect after 10 years or more.

But I know that I’m glad to have my life back.  I just completed a 100 mile bike ride this Saturday, & plan to run a half-marathon in January.  Regardless of what the future brings, I am confident that I made the right choice in going for the ablation.

I would highly recommend Dr. Saliba & the Cleveland Clinic to anyone considering this procedure.  And I would like to express sincere gratitude to Steve Ryan for the web site A-Fib.com.  My wife & I relied heavily on this site as we searched for the best treatment for me.  I know it represents a significant expenditure of time & effort, & it is greatly appreciated.

    (Earl and Flo recently (April, 2006) wrote me that Earl is now running marathons!)

From the Spouse’s Side

My Husband’s A-Fib and Ablation at the Cleveland Clinic

                                                                                                  by  Flo Hopkins

My husband, Earl Tyler, had a successful ablation (normal sinus rhythm, no medications) for atrial fibrillation in July of 2003.   Afterward I emailed Steve Ryan, creator of this web site, to thank him for the invaluable information he supplies.  He asked that my husband, Earl Tyler, and I share our stories which we are happy to do.

Earl and I were active 55 year olds in the fall of 2002.  We generally biked over a hundred miles a week and would run between 20 - 30 miles a week.   We loved our active lifestyle until Earl was diagnosed with atrial fibrillation in November of 2002.  We immediately began researching on the internet and found this web site (A-Fib.com).  The information and resources here guided our interaction with our local doctors.  If we had relied on their advice and not done the research ourselves, my husband could have been relegated to a greatly diminished quality of life.

Earl was in the hospital 12 times between November 2002 and February 2003 with extensive testing, cardioversions and medicine changes which had to be supervised during hospital stays. 

As this web site had warned, the electrophysiologist wanted to do a flutter ablation though Earl only presented with flutter when on medications.  (This doctor only performed flutter ablations - not atrial fibrillation ablations.)   Earl asked about the left atrium procedure.  The doctor highly discouraged it saying the procedure was too risky, and Earl was not a good candidate.  This information was not consistent with the considerable research we had done by this point, so we parted ways with this doctor and proceeded basically on our own to try to find the best treatment. Our local doctors did not seem to have accurate and current information on the details of the atrial fibrillation ablation methods and success rates.

Medications were ineffective for Earl, and finally the cardiologists refused to do another cardioversion at which time Earl was left in persistent atrial fibrillation.  Earl was symptomatic when he was in A-Fib.  His thinking was fuzzy.  He could feel the palpitations, and his stamina was gone.  He was sure he did not want to live in this state if treatment was possible.  By this time (and again thanks to this web site [A-Fib.com]) we had contacted Dr. Marcus Wharton in South Carolina, electrophysiologists at Massachusetts General, Dr. Neal Kay at UAB, and Dr. Andrea Natale at Cleveland Clinic.  Earl was evaluated by several of these doctors; and when the dust settled, we decided on Cleveland Clinic.  Our original appointment for ablation was in October 2003 with the department head, Dr. Andrea Natale; but since Earl could not be kept in normal sinus rhythm, we opted for an earlier July appointment with Dr. Saliba at Cleveland Clinic.

On a personal note, all of this decision making was very difficult for us.  We are non-medical people and had to undertake this most life changing decision about what treatment to choose and where to go basically without the help of our local physicians.  We educated ourselves about each of the doctors and facilities as best we could and made trips to several of them for evaluations.  Repeatedly we read that the procedure was “operator dependant,” so we wanted to get the best “operator” we could find.

My life changed dramatically.  I had been used to Earl being physically strong and mentally very adept.   We have a small business which he and I run.  During the time he was in A-Fib, I felt I had to take over as much responsibility as I could - at work, in the medical solution search, physically, and emotionally.  It was very, very hard as crisis periods tend to be.

So to make a long story short.  He had the six and a half hour atrial fibrillation ablation done at Cleveland Clinic in July of 2003.  This is November 2003, and he’s in normal sinus rhythm.  He’s biking over 100 miles a week and running over 20 miles a week.  He has his life back.  We have our lives back, and we are very, very grateful. 

We have great confidence in Dr. Saliba and in Cleveland Clinic.  They have been specializing in this procedure for a number of years, and their success rates (normal rhythm, no medications) are getting quite good.  That said, I must note that while we were so careful getting the right doctor because of the “operator dependant” issue, Earl ended up with a “fellow” doing his procedure under the supervision of Dr. Saliba.  Though we should have anticipated this since Cleveland is a teaching hospital, we were surprised and somewhat frightened by it.  Of course all’s well that ends well, and we are convinced now that Cleveland has very strict control over these ablations.  Still, it is something one would do well to discuss with the doctor in advance to avoid surprises.

This excellent website (A-Fib.com) was invaluable to us when, of necessity, we had to take on the responsibility of finding the best treatment available. We are very fortunate that this treatment was available and successful, and we are especially fortunate that we were able to find it. 

Thanks, Steve, for this website which provided us with so much help, and for your gracious responses to e-mails.  Your work has made a great difference in our lives.

bullet Mirjana Clark's A-Fib Experience
    (Mirjana Clark is a 70-year-old retired medical researcher from Emory University in Atlanta where she worked for twenty years. [Her son works in tech research.] She emigrated to the US from Croatia in 1965 and likes to travel. She plays the piano and, before going into Persistent A-Fib, loved to line dance. Except for her A-Fib she was active, healthy, and into organic foods. Her story is particularly important for those who have Persistent and/or Chronic A-Fib.)

    I had paroxysmal vagal lone atrial fibrillation (LAF) for 10 years. It improved during the last two years, from 3-5 (even 7) episodes per month to only 1-2. The A-Fib episodes usually lasted 1-8 hours, though sometimes an A-Fib attack would persist for a few days. In earlier years all attempts to ease the frequency and duration using drugs, diets, supplements, etc. failed. Oral magnesium worked for a while, but then it caused diarrhea and I had to stop taking it.
    A couple of years ago I learned about magnesium in liquid form which is absorbed sublingually, and it was apparently very effective. For all that time I lived with A-Fib without too much trouble.

    Then, in November 2002 two things happened. First, I switched to another magnesium formulation from the same company, to be absorbed through the skin while in the bathtub, either through the whole body or only through the feet. I am not sure if this latter product worked. Second, I had a very bad experience with dental work which caused a lot of anxiety.
    An A-Fib episode followed which lasted 2 1/2 days before I went to an emergency room for conversion. This was my third time in ten years. They did not want to convert my heart, because they thought I might already have developed a blood clot. I left the hospital with the fear that, if my heart converted on its own, I might get a stroke. So, instead of converting spontaneously as usual, my A-Fib became persistent.

    My life changed completely. Before I was very active. Now I became sedentary and spent nights feeling the beats of my struggling heart. The only way I could get some sleep was by sitting up in bed. Ablation was my only hope. I called the Cleveland Clinic, which had a 7-month waiting list. I also called Bordeaux (France), where the waiting list was 3 months long.

    From my reading of bulletin boards on the web and speaking with cardiologists, I was not always encouraged to go ahead with an ablation. Most people recommended waiting another two years. This was unacceptable to me. Even if it had a 50% chance of success, I was willing to get the procedure done. I thought that if the ablation failed, I could always get a MAZE operation.

    In this state of mind I flew to Paris, took the bullet train to Bordeaux, spent two days in a motel near the hospital. There I read the book "The Healer Within" by Roger Jahnke. This book was a real help during those lonely days full of uncertainty in the motel room.

    On March 24th I bravely walked down the road from the hotel to the hospital with my suitcase rolling behind. Shortly after being admitted, Dr. Haïssaguerre kindly came to meet me in my room. We exchanged a few words, but what I remember most is having to hide my deep admiration for him.
    Later that day the ablation procedure was performed by Dr. Jaïs. The procedure was not simple. It lasted four hours instead of the expected two and a half. One good thing was that he did not have to puncture the wall between the atria. (Editor's note: Doctors usually have to pass the catheter from the right atrium to the left through a membrane called the foramen ovale formed early in life as the heart develops. In early fetal development the left and right atria aren't completely separate. As the transseptal wall forms between the two atria, this foramen ovale opening usually closes up. But in Mirjana Clark's case, the foramen ovale membrane never closed up completely.)
    A second good thing was that the sources of A-Fib were close to the surface, so they were easy to ablate. The problem was there were many of them. I had to receive eleven electrical shocks, and I really felt the last ones. (Editor's note: According to Dr. Jaïs the electrical shocks were necessary to reestablish sinus rhythm in order to evaluate the ablations that were made and to complete them if necessary. Ms. Clark also had a source or focus of A-Fib that didn't come from the Pulmonary Vein openings where most A-Fib originates. Cardioversion was necessary to find this non venous focal point. "This was really a difficult case.")

    When I first felt that my heart had returned to normal rhythm, I was exhilarated. I did not know how to express my gratitude to Dr. Jaïs.
    But two days later I developed AV Tachycardia (right atrium) (Junctional Tachycardia, AVNRT) and had to have a second ablation. This was a tricky procedure because of the risk of damaging the AV node which would have required the implantation of a pacemaker. Dr. Haïssaguerre performed the procedure, which was quick and successful. He also verified that the sources of fibrillation had previously been successfully ablated.

    Then I left for Paris to celebrate my recovery. One week later, walking down the Seine river I had another attack of tachycardia and had to return to Pessac-Bordeaux. This time the problem was in the left atrium. Dr. Jaïs successfully performed this third ablation and also checked everywhere for possible sources of A-Fib, and found none. Apparently, both sources of tachycardia had been present for many years. I had not been aware of them, because tachycardia usually rapidly turns into A-Fib. (Editor's note: According to Dr. Jaïs Ms. Clark had a small reentrant circuit in the anterior left atrium, a relatively rare condition. He has seen only six cases of this.)

    During my seven days in the hospital, Dr. Jaïs visited me daily. During his visits he gave me his full attention, listening, explaining procedures, drawing sketches. He did not show the least urgency to leave, although the nurse told me in the procedure room that they were very busy performing three to four ablations a day. The last time I saw Dr. Jaïs that day, he was going to perform an ablation on a pregnant woman. I had full confidence in him and in Dr. Haïssaguerre. It was a pleasure and a privilege to meet them both.
    (Editor's note: The doctors at Bordeaux advise patients with Persistent and/or Chronic A-Fib to schedule a three to four week period in France if coming for treatment from overseas. Patients with Chronic A-Fib are more difficult to cure and usually require more than one ablation procedure. )

    It has been two months since I had the ablation, and I still do not know if I will stay permanently free of A-Fib. I am still not taking any medications. Regardless of the outcome, I know I made the right decision.
    Now I still experience occasional PACs (Premature Atrial Contractions, extra heart beats) which are sometimes uncomfortable, especially at night. I hope this will improve, as the heart fully heals. However, I much prefer having these than A-Fib.
   
    In conclusion I am pleased that I made the decision to have this procedure. If I had to, I would certainly do it again.
    Mirjana 
  

bulletRobert Dell's A-Fib Experience
     My then 5 year old son Malcolm - he is now almost eleven, finally got to go with his dad to work. I was the master scenic artist for the ABC soap opera "One Life To Live" in New York City . He saw the cameras, the actors, and I arranged for one of his drawings to be used on the show at the Community Center set. His green Tyrannosaurus Rex looked great on camera. He told me that it was such a good drawing that he thought it was too valuable to leave there, after it was already prominently established in two shots. My good friend Roger, who is the production designer, convinced Malcolm that it was so good that we wanted every one in the country to see it.
     We were walking up the 5 flights of stairs to look down on the show from the lighting grid when I felt out of breath and very tired. My heart was really racing. Maybe I ate too much sugar. After all, I had been the captain of my cross country team and I was offered a running scholarship 25 years ago.  Like many of you, I  was also athletic and also lived with daily stress, but I did not know what A-Fib was until I was 47.

    Something was wrong. I went to the ABC company doctor and he administered an EKG. He said that I should go to the hospital, or at least see a cardiologist, and he gave me a Xeroxed  copy of the print out. On the way home an hour later, everything felt fine. The cardiologist, Dr. David Southren said that I had atrial fibrillation. I was given Tenormin and he asked me to call him immediately if it happened again. He would arrange for the hospital emergency room to admit me so that he could monitor the situation, but it might never happen again.

     This was not the case. After 6 visits to the emergency room in a little over a year, I knew what it is like to be on a first name basis with the staff and a preferred repeat customer at the hospital emergency room cardiac unit.

     Paroxysmal Atrial Fibrillation, with a heart rate sometimes higher than 240 was my scenario. It felt like there were a bunch of scared bullfrogs in a bag inside my chest that were trying to jump out.   Sleep (or any other time my heart rate went down), after a stressful day caused it for me.

      First atenolol was  my med., and after that failed I was switched to flecainide (Tambocor) with a daily dose of 150 mg. After my regular hospital routine was established, Dr. Southren agreed, that with initial careful telephone monitoring, I could self convert using a “cocktail” of up to 250 mg of flecainide at one dose. This worked like magic after about 20 - 40 minutes.

     My major complaint was the side effects of Tambocor. It not only made me tired, but I also felt as if I had a constant alcohol buzz. This was onerous to me because I stopped drinking when I was 19 years old because I wanted more consciousness, not less. The worst part was that it had severely damaged my ability to function in my main area, experimental visual art.R. Dell with original art work Everything looked flat. I could no longer see shapes, patterns and line flow. It was if I was relegated to half of a life. I knew what was happening, and there seemed little I could do to make it better.

      Illness was not new to me as I had been spitting up blood from a lung condition called bronchiectasis coupled with chronic bronchitis for over fifteen years. I had stopped smoking when I was nine. The Deborah Heart and Lung Center doctors informed me that I had to live with it, although I might drown in my own blood while asleep if the rare chance of sudden vein rupture occurred. This made me somewhat reluctant to use Coumadin or aspirin.
    
      The A-Fib specter that we all live with was not much of a change, except that I now had two negative possibilities to live with, instead of one. About 2 years into A-Fib, I was  diagnosed with  hypothyroidism, which makes A-Fib control a tricky juggling act. At this time, GERD and a hiatial hernia were also discovered. For those of you who are keeping score, I also get occasional visual migraines.

         Doctor Southren then suggested that I consult with a well known electrophysiologist in New York City for a second opinion.  At that time, the MAZE Procedure was the rage. When I suggested it as a possibility, the electrophysiologist said “I would not do it to a dog.” In his opinion, it seemed to border on mutilation and was not always successful. To me, it sounded very interesting, as my feelings of desperation were starting. I contacted several well known medical centers for information.

         As I became somewhat computer literate, the possible long term side effects of my medications became apparent as I searched the web. My visual work was paid for by my day job. ABC, particularly Roger, was always very helpful in arranging, or at least looking the other way, when I needed time off for short term research fellowships (MIT, Fulbright, etc.). The best part of my life, other than my family, was taken away by this condition and the meds. “Daddy is always tired.” Daddy needed his life back.
    
        Then I found out that Pulmonary Vein Isolation, a potential cure that used catheters, was being developed. However, since I had multi focal points, my case was very complicated.

        Some time later, Doctor Southren, who was also very cautious about a surgical approach, surprisingly said that in his opinion there was now a possible viable cure fDr. Grant Simonsor me. Dr. Grant Simons at Englewood Hospital in New Jersey was in charge of a new center that could help. He is one of the Duke University group and was courted by several major medical centers before he settled in at Englewood. He had the latest computers and mapping equipment, which produced a three dimensional map of my heart's electrical pathways.

        Now there were the money issues to consider. Fortunately, Aetna, my insurance company, lists ablations as just "procedures." They do not consider them heart operations, even though they are quite costly. I received approval. My primary care physician, Dr. Richard King and my lung doctor, Dr. Clement Osei both agreed that an ablation was probably a wise move, and their offices helped with the insurance details.

         The big day came. No, not the operation, but my visit to Dr. Simons, who already had reviewed all of my medical files. He told me that the procedure was not recommended for everyone. After the usual cardiac exam and a short re-review of my massive folder he said, to my surprise, that I was an ideal candidate. Now I was really worried. You know how it is, when a dream starts to become real, like on your wedding day; this is forever, or so you think.

     Despite this good news, the possibility of undergoing the procedure and actually doing it was somewhat scary, to say the least. I talked it over with my wife and children, and they agreed with me that this was the best decision -- if I really felt it was. My older sons are both in the thirty's range.

      Now the big day did arrive. At 6:30 in the morning my wife Siena and I arrived at Englewood's admitting area, and filled out the usual forms and answered the usual questions. By this time, I had the hospital packing routine down to a science;  so many pairs of sox, sweat pants with a draw string, light and heavy reading, zippered sweat shirt, comfortable slippers, etc.

      All of the hospital staff were very sweet and considerate. Dr. Simons said hello. I am in my gown and on my back, and the IV needles are inserted. This part was easy, familiar and oddly enough comforting, as I came to associate this routine with my A-Fib being under control due to my many emergency room visits.

      I do not remember them shaving my groin. I do remember the green suits and the damned uncomfortable operating table. Where are the bed sales people when I need them?

     When I left Deborah Heart and Lung, I got solicitations for above ground mausoleum space for years. I had two major rotator cuff operations -- one for each arm-- during my A-Fib time which resulted in the implantation of metal pins. You can get on some strange mailing lists.

      I remember laughing to myself about this as I went under and wondering if I should have reserved a space.  I was a passenger, not the pilot, and the plane was taking off. I made my peace and drifted off.

       After 8 hours when she finally saw me, Siena said that my skin looked an odd shade of yellow with some bluish areas. Doctor Simons had spoken to her and gave her the results. My case was rather complicated. I have an extra pulmonary vein, and there were over a dozen places to be ablated, rather than the usual two or three. He was confident, yet cautious.

      I vaguely remember seeing Siena, my brother David and his son and hearing thunder. My back was in agony. The catheter really hurt, but this was only a prelude to the joy of having it extracted. Was there a golf ball on the end of that thing? The severe July thunderstorm that night knocked down large trees that blocked  our driveway.  They  cordially welcomed Siena home after her easy day at the hospital.

      The next morning, I walked around a lot and felt well, yet sore. I could see clearly again! The shapes in the room were so distinct and beautiful. I was not on Tambocor. My life was back. The day passed and Malcolm was relieved to know that daddy was alive, which he proved to his satisfaction when he promptly jumped on the bed and his dad. Things were looking up.

      Early the next morning, I was back in A-Fib. I was despondent. Here I go again. For the first 3 weeks until the scar tissue forms, you can still have A-Fib, but be cured in the long term. I was converted to normal heart rhythm and was sent home.

       Then the problems started. About a  week later, I was back in the Emergency Room with Dr. Southren. It felt as if the ablation had only made the heart really angry. It was not A-Fib, but I had nasty premature atrial and ventricular contractions. I had a lot of trouble walking on level ground when this happened. A-Fib was never this bad. What had I done?

        This subsided with the usual Tambocor cocktail. I returned home and shortly felt better. I was only on Coumadin during this time as a regular medication.

      A week later I started walking the 3.2 mile trail around Rockland Lake with my friend John at our usual sub 45 minute pace.  After I sprinted the last 200 yards, my heart felt fast, yet strangely calm in a way I had never experienced it before. I remember when I used to run that my heart would sometimes race at over 220 times a minute suddenly and then calm down just as fast. This would occur hours after the race was finished. Dr. Southren had said that my pre - ablation A-Fib symptoms, coupled with my mild mitral valve regurgitation were indicative of a rheumatic heart.

        I returned to my studio and finished 2 small sculptures for a museum show in Iceland and a gallery exhibition in the Chelsea section of New York City. Life was good.

       Then things really went down hill.  We were on our way to England and Wales (first time) for a few weeks in August. We were taking Malcolm to the Kimura Shukokai International Karate Tournament in Birmingham. We had a great time and the people were marvelous.  He was third in kata in his age group, with 16 nations competing.
However the trip to England was the journey from hell, including 6 hours on a runway until the flight was canceled. This started an A-Fib episode and my return to my pre ablation medications. Rats.

      In September, 2002, I had ablation number 2. This one wasn't so bad. The nurse shaved my groin before I went under. Her tact and demeanor made this potentially awkward situation a non entity. This time I asked for padding under my back for which I was later thankful . I remember waking up during the procedure and feeling my heart racing.  I spoke to Dr. Simons and calmly asked if the operation was going well. He later said that I basically was not pleased to be there and that I expressed that in a variety of ways, which sometimes happens in a patient’s sedated condition. No conscious offense given and none taken.

      When I woke up later that evening, I got my usual loving leap from Malcolm and the warmth and comfort from Siena that made me feel like crying. I was defenseless emotionally, but at least my back did not hurt and the catheter golf ball was replaced by a small marble.

      During the night, I woke up in a violent coughing fit and found that my groin was covered with hot liquid. I had passed a large blood clot that looked like a small bloody chicken liver. The nurses were right there and I was soon asleep.

     Ablation number two eventually drove the A-Fib away, although it took several weeks to leave and it expressed extreme displeasure.

       A week after the second PVA, I was back in the hospital, feeling like the character John Hurt played in ALIEN, with the nasty critter eating its way out of my chest. It got worse as we went to the hospital. The EKG readout resulted in a panic at the hospital, as the computer was registering it as life threatening. Dr. Simons and 20 very anxious and out of breath people rushed into the room from all over the hospital, within one minute, just as I returned to sinus. Dr. Simons quickly determined that it was a highly unusual reading which was exacerbated by the medications -- atrial fibrillation with atrial flutter. In retrospect, it was all quite entertaining. I remember laughing, but Siena saw all of them run into the room as the hospital public address sounded the alert. By this time, she was used to the routine.

      The EKG readout looked like the classic physics example of a standing wave on all of the readouts.  The strange readings soon continued with extreme variations in heart rates from minute to minute, with highs of 140 to as low as 50. Massive medications were given and then regular A-Fib -- including heart rates of 240 started. A few hours later, all was quiet. The portable defibrillator unit and the long needle for emergency last resort were kept by my bedside through the night. My eldest son Rob was thankfully there, which really helped. This heart thing was starting to get ridiculous.

     After observation overnight, I was sent home on 300 mg of Tambocor, plus low doses of lopressor and digitalis. Despite the calamity of the first 2 weeks after the operation, I am  feeling much better now, with no problems. The Tambocor was stopped after 13 days. There have been no problems since then. However, I was bothered by nasty premature ventricular contractions which ended some months ago. I also had headaches and a brain power loss.  Now it is six months past number two, and things are still improving, but my energy level is a little lower than I would like. My consciousness has returned, along with my vision. My visual work is getting back to its pre A-Fib level. Malcolm's dad has energy and Siena is no longer chained by “our” illness. She is back in her studio preparing for her next NYC solo show.

      Doctor Simons called me at home a number of times throughout the ablation ordeal to see how I was feeling. What a sweetie.

      I no longer live in the A-Fib shadow and no longer take the drugs. My life is back. I no longer have to be content with less. All is now quiet.  The ablations have given me my life back.  I no longer have to worry about what pills, foods, or attitudes I should have to avoid A-Fib. I no longer go to sleep at night wondering if I will wake up with A-Fib, or not wake up at all due to a stroke.

         Those who do not want an ablation will naturally dwell on the negatives. My cure was fairly rougher than the usual. I hope that those who read this personal account will forgive my sentimental rendition with its sarcastic humor. Please accept my apologies for any factual or technical errors. However it is my story, and this is how I remember it.

        I discovered the A-Fib group http://groups.yahoo.com/group/AFIBsupport in September, just before my second ablation. Your help, information and support will never be forgotten. A special thanks to John Codling for his kind, timely support and information and to Steve Ryan for his encouragement for this cathartic writing endeavor.

      I was the first patient ablated for PAF at Englewood, using this new technology. The hospital is now running major 3/4 page newspaper ads about their capabilities, with me as poster boy. I get no money for this, its just community service. This story is written in the same spirit. Hopefully someone will find this helpful.

     The only thing worse than having an ablation is not having an ablation.

    (Robert recently E-mailed me an update (May 2006) which I include here.)
It is now almost 4 years since the ablations. After reading all of the reports about the potential of silent afib, I again "bit the bullet" and had the 30 day event monitor evaluation. The event monitor measures any irregularities that occur in addition to any reported events by the wearer.
    Verdict: No afib, silent or otherwise. A few PACs and a few moments of fast heart beat, often while walking upstairs, etc.
    Life is good...
Robert's E-mail address is vaettir (at) aol.com (the @ is written out to prevent access by spam mailing lists).
 
bullet Early Focal Catheter Ablation Procedure 1998

    Steve Ryan had his first A-Fib attack in the beginning of 1997. He was 56-years-old and was in apparent good health (5'10", 185 lbs). He trained for and ran 400 meter dashes and 5K's. He was married and resided in Los Angeles. He worked on the camera crew of the NBC soap opera "Days Of Our Lives" which involved frequent late nights and overtime. Cured of A-Fib in April, 1998, he has been symptom free to this date. The following is his story in his own words. He writes A-Fib.com and his wife, Patti, edits it.

    The first time I had a noticeable attack of A-Fib was Sunday evening January 19, 1997. It felt like I had mice running around in my heart. My pulse would get weird and irregular, then start racing. Just days earlier I had undergone laser surgery on my face and was in a lot of pain. I can't think of anything else that might have triggered the A-Fib.
    By the time I got to a hospital emergency room that Sunday evening, my pulse was nearly back to normal and I was sent home. My physician, Dr. Glenn Gorlitski, sent me to a specialistEKG Signalt, Dr. Robert Levin with Cardiology Consultants of Santa Monica. On Friday, January 24, as soon as they hooked me up for a treadmill test, they could see from the EKG that I had A-Fib.
    I had what is called "Paroxysmal" A-Fib. My A-Fib attacks would usually be short but would recur frequently, sometimes around twenty a day. Other days I wouldn't have any attacks. (In "Chronic" A-Fib your heart stays in A-Fib.) Every once in a while I'd feel lightheaded and almost lose consciousness. I later found out that, after an episode of A-Fib, my heart would sometimes stop beating for several seconds before kicking into normal rhythm. Since I worked around heavy, moving equipment, I had to stop working and go on disability October 8, 1997. This really motivated me to find a cure.
     Dr. Levin prescribed the blood thinner warfarin (Coumadin 5 mg) for me to make sure I didn't have a stroke. (In A-Fib, the chambers of your heart aren't pumping out properly. Blood clots can form and travel to your brain causing a stroke. Blood thinners like Coumadin and aspirin help keep these clots from forming.)
Graphic of Rx Container    During this time I was on and off several different medications. None of them seemed to do much good. They were:
    1. Toprol-XL (metoprolol) 50 mg (a class II beta-blocker)
    2. Digoxin (Lanoxin 0.125 mg)
    3. Quinidine Glaconate (quinidine) 324 mg (class 1A)
    4. Procanbid (procainamide) 1000 mg (class 1A)
    5. Betapace (sotalol) 80 mg (a class II and class III drug)
    6. Cordarone (amiodarone) 5 mg (a class III and class I drug)
    Toprol-XL did slow down my heart rate significantly. My pulse got down in the 30-40 beats per minute range which isn't healthy. I still had A-Fib but it slowed down along with my pulse. Cordarone (Amiodarone) made me impotent and caused me to cough up blood.
    At this point my life was pretty much in the tank. In addition to having to quit work, I had to give up training for the 400 meter dash and all sprinting. I still tried to jog while wearing a heart monitor (Polar Heart Rate Monitor available in sporting goods stores). If I went into A-Fib when I started jogging, I'd stop and just walk for a while. When I'd go into A-Fib, I'd first feel a fluttering sensation in my chest; then shortly afterwards my pulse would jump from 60 to 120 or higher. Being dedicated to running I'd sometimes run with A-Fib. My pulse would be very fast during the whole run. This probably wasn't a smart thing to do.  A lot of time when relaxing after a run, I'd go into A-Fib. Graphic of Doctors in Operating Room
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    Dr. Levin sent me to Dr. Ibrahim Helmy, an Electrophysiologist at St. John's hospital in Santa Monica. He performed catheter ablation procedures on me on two occasions, November 18 and December 8, 1997. He only worked in my right atrium to eliminate Atrial Flutter. These procedures seemed to me to be unsuccessful. He referred me to Dr. Wee Nademanee at the USC Medical Center who tried to perform a catheter procedure on December 16, 1997. He attempted to get into my left atrium but had problems with his equipment. As I understood from what was explained to me later, his hard drive crashed forcing him to stop.
    Now I was discouraged and even desperate. My wife, Patti, encouraged me to get on the Internet and research Atrial Fibrillation. I did this with a vengeance. Later I sMan and Computerpent a lot of time in medical libraries reading everything I could find about A-Fib. I called every US doctor and researcher in A-Fib who might help me or give me information. I consulted and was examined by other doctors including Dr. Christopher Wyndham of the North Texas Heart Center in Dallas, Texas; Dr. Richard Page at the University of Texas Southwestern in Dallas, Texas; and Dr. Tony Pacifico at Baylor University Medical Center in Houston, Texas.
    My research and conversations with experts in A-Fib eventually led me to look outside the U.S. to Dr. Michel Haïssaguerre in Bordeaux, France. (The very first article I read and doctor I talked to, Dr. Frank Marcus of the University of Arizona, mentioned Dr. Haïssaguerre's work. But at that time it never occurred to me to contact Dr. Haïssaguerre directly. GoinGraphic of Man and Globeg to France for treatment seemed like going to Mars! However, after months of research and talking to other doctors, I finally decided to see if Dr. Haïssaguerre could help me.)
    Writing and faxing to a hospital in Bordeaux, France, wasn't all that difficult, but calling on the phone was quite a challenge even though I thought I knew enough French. After reviewing my records, EKG's, etc. Dr. Haïssaguerre thought I would be a good candidate for a Focal Point Catheter Ablation procedure. In his research and practice he had identified areas of the heart that produce the extra pulses of A Fib. He would pass a catheter from the groin up through a vein or artery to the heart, then using RF energy he would cauterize or isolate the diseased heart tissue that was producing the extra pulses. He had a good deal of experience with this procedure. Whereas, at that time this procedure wasn't available or was experimental in the U.S.
         Map of France with FlagIt was quite a mental leap for me and my wife to even consider going outside the U.S. for treatment. Then we had to find out how much it would cost, and whether my insurance would cover any or all of it. I was very fortunate to be covered through my company GE/NBC by Blue Cross/Blue Shield of Alabama. Once Blue Cross/Blue Shield of Alabama got all the information it needed, it pre-approved me getting treated in France, though of course we had to pay for travel and lodging. (The final bill for twelve days including two major and two minor procedures in the hospital in Bordeaux, France was $9,235.04, farGraphic of Man Flying on Credit Card less than we would have paid in the U.S. We paid the bill by credit card. My GE/NBC insurance later reimbursed me 100%, though I first had to translate the bill from French to English.)
    You can imagine the effort we had to put out to get updated passports, make travel and lodging arrangements, work out how to pay the French hospital, etc. The biggest obstacle came from a company called United Health Care which administers GE/NBC's disability program. Because A-Fib frequently reoccurs after the first procedure, Dr. Haïssaguerre requested I stay in the hospital in France for 8-10 days (I actually wound up staying longer). But United HealthCare insisted on a return to work date earlier than that. I could have lost my job if I was absent without leave. But thanks to the Family Medical Leave Act and a sympathetic manager at GE/NBC, I was able to get an unpaid leave of absence from work and later return to my job at GE/NBC.Graphic of Plane Circling Earth
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    My wife, Patti, and I flew into Paris Friday, April 16, then took a train (the TGV) to Bordeaux. We found that not many Bordeaux residents spoke English. I was due to check into the French hospital Sunday, April 19, but I showed up there early to make sure we could find our way and get to the right department. When I checked into L'Hôpital Cardiologie de Haut-Lévèque, Ave. de Magellan. 33604 Bordeaux-Pessacpicture of L'Hopital Cardiologie de Haut Leveque, Bordeaux, France on Sunday, my A-Fib symptoms had disappeared! Dr. Haïssaguerre, who did speak English, reassured me that this was not unusual, that 30% of his patients have the problem of disappearing symptoms when they arrive.
    Everyone at the hospital was remarkably friendly, though very few spoke English. They gave me a big room with two beds so that my wife, Patti, could stay with me when she wanted. The food was incredibly good. Almost every dish had its special French sauce. Someone arranged that I get double portions of the entrees which I very much appreciated. Picture of Steve Ryan in hospital bed with two French nursesThe nurses' stations seemed well staffed with competent, caring nurses.
    On Monday and Tuesday I went through several tests and monitoring procedures in preparation for my catheter ablation procedure which was scheduled for Wednesday. They took X-rays and set me up with an RF heart monitor that allows patients to wander around rather than be confined to bed. I took advantage of this to explore the hospital grounds which were very scenic. (One time when I walked into an elevator, the floor nurses ran around looking for me because they had lost the RF signal. From then on I told the floor nurse any time I was going to use the elevator.) I also had a 12-lead battery-operated EKG on for a day. Sometimes I also had on a Holter monitor which records your heart beats when you press a button. Picture of Steve Ryan in hospital bed with many monitor electrodes on his chestI had so many monitor electrodes on my chest you could hardly see the skin. But I still wasn't experiencing any A-Fib symptoms. They had me do 10 squats with the EKG leads attached, but even that didn't work.
    Everyone warned me about a test I'd have to take on Tuesday. I would have to swallow an Ultrasound (Doppler) tube which would be used to check for blood clots in my heart. If any were found, they couldn't do the procedure. I gargled an anesthetic, then I actually had to swallow this huge tube. It was tough not to gag on it. After what seemed like an awfully long time, they finally pulled out this tube and told me they found no blood clots in my heart. Even the stress of this test didn't bring on any A-Fib attacks. Later that day they put me on a stationary bike, but I still wouldn't go into A-Fib.
    Dr. Haïssaguerre reassured me that he had other means of stimulating my A-Fib, and that this was one of the reasons he had asked me to plan on staying 8-10 days in the hospital. He also told me I would be awake during the entire catheter ablation procedure so that I could interact with the doctors, give feedback, etc. Tuesday evening a nurse came in and shaved off every hair around my groin.
    Graphic of Operating Room EquipmentWednesday morning, April 22, my catheter ablation procedure began. In my room the attendant put me on a gurney and wheeled me into the elevator and down to the procedure room, then he and a nurse transferred me to the operating table. The nurses made me as comfortable as possible, since I might be on my back for a long time. One nurse wore a lead shield, and they all worked behind some kind of glass or plastic shields. I wondered how much fluoroscopy radiation I would be exposed to as they used the fluoroscopy to guide the catheter through my heart.
     They gave me a local anesthetic in my groin and made a small cut in a vein or artery there and inserted the catheter. I was relieved that it didn't hurt much at all. Dr. Haïssaguerre tried to induce me into A-Fib, first with a hormone similar to that produced during exercise, then with a drug that made me feel somewhat dizzy and strange. On his cue I pushed and held my breath. But nothing worked. Finally, using the catheter he stimulated me into A-Fib.Graphic of Doctors in Operating Room But once started, the A-Fib wouldn't stop. After 20 or 40 minutes and the administration of an intravenous medication, the A-Fib stopped. Shortly thereafter I spontaneously went back into A-Fib which is exactly what they wanted. The heart tissue that was producing these extra pulses was identified as the right superior pulmonary vein ostium area (an opening from one of the veins coming from the lungs into the heart).
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    Anytime something changed or when they started a new procedure, Dr. Haïssaguerre or his colleague, Dr. Shah, would walk over to me to talk about what they were doing, what I should expect, what I might have to do, to ask me how I was doing, etc. Their contact and attitude was incredibly reassuring and made me feel confident. I had certainly come to the right place. (They spoke among themselves in a combination of French, English, and what I think was a Bordeaux dialect that was unrecognizable to me. Sometimes, like when I went into spontaneous A-Fib, it sounded like a French soccer match with all the cheering! They certainly had a great camaraderie and enthusiasm for what they were doing.)
    Graphic of Doctor with Lab EquipmentDr. Pierre Jaïs, a colleague of Dr. Haïssaguerre, guided the catheter from my right atrium through the transseptal wall (the heart tissue that separates the right and left atrium) and into my left atrium in less than five minutes. This is a rather tricky procedure in which he was obviously very skilled and experienced. Then Dr. Haïssaguerre took over and cauterized part of the area of my right superior pulmonary vein ostium with RF energy from the catheter.Heart with Pulmonary Veins He told me that the tissue there did look diseased. He also checked all the other typical focal point areas of the heart, but they looked OK. They gave me some medication so that I wouldn't feel the burning in my heart tissue.
     Usually when someone is in A-Fib, the tissue is treated, and the A-Fib stops indicating the diseased tissue has been cured. But this wasn't possible in my case. Since I hadn't been in fibrillation before the procedure, it was hard to determine if all the diseased tissue was ablated. Dr. Haïssaguerre said he couldn't verify that he had taken care of all the bad tissue at the right superior pulmonary vein ostium. He also said he had found Atrial Flutter in my right atrium which his colleagues would fix.
    Dr. Haïssaguerre went up to see my wife, Patti, to fill her in on what had happened. His colleagues worked on me for another two hours. I felt pain in my right shoulder which they said was normal. They said they had a lot of problems stopping the flutter in my right atrium in the isthmus between the atrium and the ventricle, possibly because of the two previous ablations I had had. They said they were only able to block the signal in one direction and not the other. They were obviously getting tired. I had been there for over nine hours and was the second person they treated.
    Picture of Steve Ryan pushing portable IVBack in my room I was attached to an IV with an anticoagulant Heparin dosed out to me automatically to prevent blood clots and stroke. Once I was able, I could go to the bathroom and walk around with this IV because it was battery operated when not attached to the wall plug. When this treatment was over, the nurses gave me injections of an anticoagulant in my belly three times a day. I was wiped out and famished at the same time.
    I was pretty much out of it Thursday and slept all day. I don't remember much of that day. Friday Dr. Haïssaguerre and Dr. Shah came by to talk to me about what had happened and my prognosis. They repeated how they weren't sure if they had taken care of all the diseased tissue in the right superior pulmonary vein ostium. They also said they weren't certain they had achieved blockage of my right atrium flutter because of all the previous catheter ablation lines from my first two procedures. They told me they would do a follow-up catheter evaluation of me Wednesday. They suggested that over the weekend, when and if I felt up to it, I should walk up the stairs to see if I could go into A-Fib.
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    That weekend I did walk up the stairs and even walked outside in the hospital's park. Sunday, April 26, around 6:15 p.m. my wife, Patti, and two nurses were in the room with me when I went into A-Fib big time. I felt my heart bounding around, then my pulse speeded up. This was the first time I was ever happy about going into A-Fib. I knew now they could find exactly where the A-Fib was coming from.Graphic of EKG Signal The nurses got the portable EKG unit and documented my A-Fib. They also had me wear a 12-lead 24-hour battery operated EKG monitor. I didn't come out of the A-Fib attack till around 9:00 p.m. which was the longest A-Fib attack I had ever had.
    Monday Dr. Shah said they would do another catheter ablation procedure on me. That night I was going in and out of A-Fib all the time. The nurses felt fortunate to be able to document my attacks, because these EKG's of my A-Fib helped the medical staff pinpoint the source of my A-Fib.
    Due to a cancellation, my second catheter ablation procedure was moved up to Tuesday, April 28, at 2:30 p.m. I went through the same procedure as the week before with different nurses but the same doctors.  This time I had no trouble going into A-Fib. Dr. Haïssaguerre later said he just touched the right superior pulmonary vein ostium area and it flew into A-Fib. (After ablation some of the electrical connections may recover, causing the same ablated area to again trigger A-Fib.) Dr. Haïssaguerre said he wound up cauterizing one third of the ostium area. "We try to keep the burns to a minimum," he said.  Again he went to see my wife, Patti, to tell her that he felt very good about this procedure, that he thought he had eliminated the focal point A-Fib.
    Graphic of Doctors in Operating RoomDr. Shah and a second doctor came in to work on my right atrium to get rid of the atrial flutter. They wound up mapping my whole right atrium. Instead of the normal 20 watts of RF energy, they used 60 watts on me to block the atrial flutter. I didn't even feel it. They said they couldn't use any more RF power without risk of damaging surrounding tissue. Either my isthmus was too thick or the flutter path was too deep to achieve complete blockage. They didn't finish till 8:30 p.m.
    After they had pulled out the catheters and started to clean me up, I vomited all over the floor. There was blood in the vomit. It looked the color of coffee grounds. The staff thought it might be a sign of ulcers. For some reason this did not bother me at all. I really felt cured of my A-Fib. This vomiting was nothing compared to getting rid of my heart problem.
    The next day, Wednesday, I recovered a lot faster than before. By Thursday I was walking around. Because I had vomited blood, they tested me for ulcers.Female Doctor Reading Charts Again I had to not gag while swallowing a lighted tube that took pictures of my stomach. They found four little, seemingly new ulcers. Dr. Haïssaguerre and the ulcer doctor thought medication would easily clear these up. These beginning ulcers might have been caused by me not eating since the evening before the procedure, being on anti-coagulants, and/or the strain and length of the operations. As the doctors predicted, once I took the medication, I was cured and haven't felt anything related to ulcers since.
    We asked Dr. Haïssaguerre if he could tell from having examined and tested me, what started or caused my A-Fib. He couldn't say for sure. He suggested a viral infection may have started it.
    I was supposed to stay in the hospital a few more days so that the nurses could give me anti-coagulant shots and monitor the anti-coagulant levels in my blood. But I convinced them I could give myself the anti-Medications and Needlecoagulant shots in my belly at the right times, and I became an out patient Friday, May 1, 1998. (Part of my motivation was to save money on hospital costs. I still wound up staying in the hospital 12 days, two more than we had planned.)
    Once back in the States I did a follow up examination with Dr. Michael Lesh of the University of California at San Francisco Medical Center Cardiology Dept., a colleague of Dr. Haïssaguerre. To this day I have been symptom free of A-Fib! Even though the doctors in France couldn't verify they had fixed the atrial flutter in my right atrium, I haven't felt any flutter or fibrillation. I returned to work and feel terrific. The only medication I take is a baby aspirin (81 mg) once a day with breakfast. Annual check ups have revealed no A-Fib symptoms. I resumed my running. (In 1999 I took third place in a 5k in my age group.) I work and train very hard with no apparent side effects.Graphic of Healthy Heart
    I feel so fortunate to be free of A-Fib! I thank God for getting me through this and pray I can use the rest of my life to help others with A-Fib.

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About A-Fib.com: A-Fib.com was created by Steve S. Ryan to provide patients with unbiased A-Fib-related information in a format the average person can understand. His wife, Patti, edits A-Fib.com's content to make it readable by the lay (non-medical) person and relevant to patients. Steve is not a medical doctor (though he did earn a Ph.D. from Ohio State University).
    After three failed ablations in 1997, Steve locked himself in a medical library armed with a medical dictionary and read everything he could find about A-Fib. He tediously waded through the medical jargon doctors and researchers use, and emerged from the library with an understanding of A-Fib and a plan of action.
    Steve was cured of his A-Fib in 1998 by a Pulmonary Vein Ablation (Isolation) procedure. (Read about his story in the PersonalExperiences section of A-Fib.com.) After his cure, Steve felt compelled to write A-Fib.com in order to spare other patients the difficulty he had in finding understandable information about A-Fib.
    A-Fib.com is deliberately not affiliated with any medical school, company, doctor or other organization. It does not accept advertising.
    Though inclined toward Pulmonary Vein Ablation as a cure for A-Fib, Steve tries to maintain an open mind and be free of any conflict of interest. He tries to not only report on recent A-Fib research, but also draw conclusions and make recommendations for A-Fib patients.


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