A-Fib Patient Story #20

From Nepal to Bordeaux—Treatment of Chronic A-Fib

by Raju Tuladhar, 2007, Kathmandu, Nepal

I am writing this story about my mother’s (Basundhara Tuladhar) 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.

Raju Tuladhar,
Kathmandu, Nepal
My email address is: peanuts(at)mos.com.np

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