Atrial Fibrillation
 RESOURCES FOR PATIENTS

PERSONAL EXPERIENCES WITH ATRIAL FIBRILLATION

    The individual stories are listed by characteristics or qualities you may be interested in:

WHAT IT FEELS LIKE TO HAVE A PVI AT THE UN. OF PENNSYLVANIA
SUCCESSFUL PVA(I) BUT STILL ON MEDS

FROM NEPAL TO BORDEAUX---TREATMENT OF CHRONIC A-FIB

A-FIB SYMPTOM FREE SINCE 2001, THANKS TO DR. MARCHLINSKI

ABLATION AT BORDEAUX AFTER FAILED MINI-MAZE OPERATION

ABLATION AT NEW DELHI, INDIA FOR $5,200

CRYO BALLOON CATHETER ABLATION AT MASS. GENERAL

MOWING THE LAWN THREE DAYS AFTER AN ABLATION

CYCLIST/TRIATHLETE WITH PERSISTENT A-FIB

WIFE AND HUSBAND BOTH WITH A-FIB

25 YEARS IN A-FIB

THE SALTMAN MICROWAVE MINI MAZE OPERATION FOR A-FIB

INTERNATIONAL TRAVELER/SCUBA DIVER DIZZY AND FAINTING FROM A-FIB

CURED AT THE CLEVELAND CLINIC

DEATH FROM AMIODARONE?

MARATHON RUNNER

HEAVY DRINKING

EPSOM SALTS CURE, MAGNESIUM AND POTASSIUM SUPPLEMENTS

HUSBAND AND WIFE STORY

PERSISTENT (CHRONIC) A-FIB (1)

PERSISTENT (CHRONIC) A-FIB (2)

TWO ABLATION PROCEDURES NECESSARY

EARLY FOCAL CATHETER ABLATION PROCEDURE 1998

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.)

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)

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.

 A-FIB SYMPTOM FREE SINCE 2001, THANKS TO DR. MARCHLINSKI

ABLATION AT BORDEAUX AFTER FAILED MINI-MAZE OPERATION Go to http://af-ideas.com/My Wolf Mini-Maze III  Bordeaux.htm

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@vsnl.com
Web site: http://www.ehirc.com

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.

    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)

   
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 afibbers seeking answers, not BS."
 
CYCLIST/TRIATHLETE 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 7^th 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 7^th 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:

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

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 12^th 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 AF.  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)

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)
    
THE SALTMAN MICROWAVE MINIMAZE OPERATION FOR A-FIB

    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 wor