A-Fib Patient Story #36

Bordeaux Treatment Turns into Nightmare

by Mark Hadfield, 2010

This is about my father who died at the Haut-Lévêque Hospital in Bordeaux, France on January 21, 2007 aged 71. As far as I know, my father was the first person to die after receiving PVI treatment at this hospital out of more than 4,000 patients.

My father was diagnosed with A-Fib about 10 years ago when he was living in London. He was treated with drugs at first, but they made him feel terrible and were worse than the A-Fib at the time. He elected to receive a new type of pacemaker that might be able to regulate his heart. I don’t have the details on what type this was, but it never really helped him much; and he continued to have intermittent episodes of A-Fib every month or so. These gradually became more frequent and more debilitating. He went through just about every drug they could offer him searching for relief. He eventually settled on Amiodarone which he took pretty much continuously.

In 2004 we all took a vacation to Australia and rented a house together. My father was always a very active and fit individual, a sportsman and a type ‘A’ personality. He was surprised to notice therefore that he had difficulty walking up the gentle hill the house we were renting was situated on. Not because of his heart, but because he was short of breath; something he had not noticed before. Upon his return to South Africa where he had since settled, he was diagnosed by a lung specialist as having ‘idiopathic pulmonary fibrosis,’ a terminal disease of the lung. The word idiopathic literally means ‘of unknown origin.’ The cause being unclear, however, our own research resulted in the finding that it was a common side effect of Amiodarone and was considered a toxic reaction to the drug that patients should be monitored for. This was the first that our family had heard of this possible side effect; and although the doctors refused to acknowledge this as the most likely cause, they agreed that he should stop the Amiodarone immediately.

His diagnosis was still terminal and expected to be about four years off. The treatment they recommended was chemotherapy, not as a cure but as a method of slowing his immune system’s attack on his lungs. Needless to say this was not a reasonable option to our family or my father who would rather die in good spirits than go through the morbidity of chemo with no possible cure and die anyway of the same ailment. He elected to refuse all western medication and treatment, and turned to Christian Science for help instead. For 18 months my father took no drugs at all and tried to be cured through the power of positive thought, philosophical work and prayer.

I went to visit my parents in mid-2006 as my father seemed to be going downhill despite his best efforts to maintain. He was in permanent A-Fib, and the lack of circulation was affecting his lungs which were filling up with water as he teetered on the brink of heart failure. He had been checked into intensive care on three occasions, and each time was put on a course of diuretics and rate control drugs to try to improve the heart function. My father found these drugs to be so debilitating (and contrary to his efforts with Christian Science) that he would soon stop taking them again, feel temporarily ok and then relapse again. I listened to him coughing late at night, unable to sleep with the water on his lungs and the sense of drowning. I should point out that up to this point, not a single heart specialist out of the multitude that he had consulted with in the UK and in South Africa had ever mentioned the possibility of a PVI cure, and the family was unaware of its existence.

In desperation I turned to the Internet for help and was overwhelmed by my findings of PVI and its successes. I printed out page after page for my parents to read as neither was familiar with the Internet as a source of information. When I arrived that Christmas, my father was contemplating the end and was deeply depressed; but when I left, we were all filled with new hope and looking forward to getting my dad into one of the best PVI treatment centers we could ASAP.  We narrowed the search down to Bordeaux in France, the Cleveland Clinic, Marin General and UCSF in CA where I reside. We spoke with each about waiting lists and costs. These were not insignificant in the US at around $50,000−$80,000 per treatment (and we might need more than one). The waiting list for Bordeaux was 12 months, and this seemed too long given my dad’s rapid decline. With the help of a French friend we wrote a heartfelt and pleading letter to Bordeaux admissions and were overjoyed to get an affirmative response. My father would be treated in Bordeaux on December 11, 2006 (six weeks hence). The cost: 14,000 euros.

I won’t go into all the details of preparing for the trip. Suffice it to say that it was not easy getting my father to Bordeaux in his state. At this point his A-Fib was so bad that he had to be in a wheelchair in the airports, and could not walk further than a few hundred yards on his own. Nonetheless, we were sure that once he was treated, he would be feeling much better very soon. This because it was partly the rate control drugs that made him so weak, and we longed to get him off this awful medication and get his heart beating properly again.

We did not meet the doctors upon his admission. The Haut-Lévêque hospital is very French, and there is a significant language barrier with everyone you meet. My mother and I trusted that all would be well, and we left my father smiling and waving goodbye in good humor and spirits. When we returned later that night, my father told us a doctor had come to see him and discussed his treatment with him. My father had asked where he fit in the typical scale of patients they treated, and he was told “about average.” They discussed his pacemaker, the drugs he had tried, his lung condition and his permanent A-Fib. Nobody seemed alarmed by his condition, and he was reassured that all would be well. My mother and I waited anxiously for his return from treatment the next day which took nearly seven hours for him to be returned to his room.

When my father was wheeled in, he was very pale in the face and had an oxygen mask on. He was clearly weak and looked distressed. Soon after we met his doctor for the first time, Dr. Pierre Jaïs, a confident and kind young man, who reassured us that the procedure had been a success and the result was “good.” My father’s heart was in normal sinus rhythm for the first time in over a year. He cautioned us that the heart would be swollen and that the procedure had been long and tiring for my dad, but he should recover and feel better soon. We left my father to rest, and in high spirits we left the hospital to celebrate.

Our return from dinner yielded the first of what would be a nightmare of bad news for us in France. The doctor had called the hotel, and we were to call the hospital immediately. We were told by the on-duty doctor in broken English that my dad had suffered an infarction (heart attack), and was in intensive care. We should come immediately. On our arrival we found my father in a drug induced coma and on a ventilator. The infarction would not be treated until later we were told. My dad would be monitored overnight and although in serious condition, was stable.

In the morning we again met with Dr Jaïs who communicated with us clearly for the first time since this downward turn. The infarction was not that serious. The real issue was that before the PVI treatment, the heart was pumping at about 25% of its capacity. According to Dr Jaïs it is common after a PVI for the heart to temporarily reduce its efficiency even further once in sinus rhythm, before gradually increasing thereafter to around 65% efficiency. This would take time we were told. The temporary drop in efficiency had been enough to put my dad into heart failure, and this had been aggravated by the use of over 5 liters of fluid during the PVI to irrigate the tip of the catheter. The heart failure was “expected” we were now told. The primary problem now was that his kidneys had stopped working, and he needed immediate strong diuretics. These took a day to work, and his kidneys returned to weak function. He was kept unconscious on the ventilator for four days before being slowly woken up. It was terrible for my mother and me to see him in this state. We were elated however to be told on the fourth day that he was awake, was asking for his coat and wanting to go home. He was checked out of intensive care at this point and back to his regular room in cardiology under the care of Dr Jaïs.

That night my father was weak and quiet, but quite conscious and rational. At around 8pm he started complaining of a stomach ache. We called Dr Jaïs to come and take a look. I told the Dr that he likely had some indigestion as he had eaten some grapes after not eating for fours days on the ventilator. Not to worry about it, I told the Doctor. Dr Jaïs however was not convinced and ordered an ultrasound exam. He said that my father’s pain was in a strange location. That night around 11pm, I received an urgent call from Dr Jaïs. The test results were not good, he said. My father’s aorta was eviscerating and might rupture. The ultrasound showed it at 65mm when it should be at around 30mm. My father was being rushed to a different hospital to have a CT scan. The surgeon refused to operate without the clarification of the CT. Dr Jaïs said that it might rupture on the way, or my father might die on the operating table. He put the chances of pulling through this new problem at 50/50. We were again devastated by this news.

The morning yielded my father once again on a ventilator and unconscious. The CT scan had shown that the problem was not the aorta (although problematic with its enlargement) but the colon. My father had been given a colostomy and would now have to recover in a new ICU—that of the stomach ward located in Haut-Lévêque La Maison. This part of the hospital was a terrible place. Not a single nurse spoke any English at all. The doctors were distant and dismissive, and bright lights lit the ward 24 hours a day. My father hands had been strapped down to the bed to stop him from pulling out his tubes. When he started to come out of his slumber, he was in distress, confused, depressed and hostile. He again started to make a painfully slow recovery. His breathing was labored and he had significant weakness on the right side of his body. Mostly his right arm and leg were limp and did not move at all. They administered several different brain scans to see if they could detect a stroke. No evidence of this was found, and there was no real explanation for the weakness we saw. My father was desperate for water, but we were told not to give him any. He pleaded with us to release his hands which we did on occasion, but he would become irrational and would again have to be restrained by the nurses. After 4 weeks in this terrible place, my father was making oblique references to suicide— telling me to fetch the gun from the car and he would pull the trigger. Of course there was no gun, but the message was clear. This was a terrible time for our family who all visited him in succession. Although he was technically no longer a patient of Dr Jaïs since the colostomy operation, we pleaded with Dr Jaïs to readmit him into cardiology. We could not stand the atmosphere in that La Maison ward any longer, and we could not stand to see my dad so unhappy.

At this point I had several hard conversations with the doctors who were treating him, particularly during the discussion of stroke. It had become clear to me that the doctors would continue to do whatever was necessary to keep my father alive. I thought about the things that had driven us to seek the PVI treatment in the first place, how he had walked into the hospital in good cheer. How he could have stayed in South Africa and lived out his life – whatever was left of it – on the rate control drugs. We had come to France seeking a better life for my father. The thought of taking him home confined to a wheelchair, a weakened man and a depressed one, did not seem right to me. My father had always prided himself on his strength of mind and body. I made it clear to the doctors that we did not want them to treat him if there was no hope of him recovering to live a quality life again. The family did not want to see him back on a ventilator. My father did not want to continue to live in that awful ward, constrained as he was to his cheerless bed. The doctors were dismissive of me – all except the faithful Dr Jaïs who had never abandoned us and was still the only person who could really communicate with us in a satisfactory manner. Dr Jaïs assured me that he understood our feelings and, when the time came, he would be there with us in our decision. That time was not now we were told. My dad still had hope of recovery.

After moving my father back to cardiology the sixth week since his PVI, he began to regain his strength and his will to live. Most encouraging of all, he started to become more rational and at least knew were he was and why. He started to sit up in bed and began exercising his hands and legs. He had continued unexplained weakness on his right side but was at least able to move with difficulty. Dr Jaïs informed us that his heart had gone back into arrhythmia but that this was expected with the severity of his A-Fib. My father would have to have a “touch up ablation” when he had recovered sufficiently. This second ablation was to be short and less taxing on my dad. My father took the news stoically. A strong dose of antibiotics was administered to treat a minor infection of streptococcus. My father was getting out of bed every day to sit in his chair. We had good conversations, and my mother left France for the first time in six weeks to visit my brother in London for two days.

Rapidly my father fell ill again. This time it was an infection of unknown origin. His pulse was racing at 160−180, his breathing was hard, and he was drenched in perspiration. He told me that he was in a lot of trouble, and I could see that this was the case. All through the evening he fought a fever, until his blood pressure began to drop precipitously, and the doctors connected him to an adrenalin machine to stabilize his blood pressure. The doctors told me that he was going into septic shock, and that this was very serious. My mother would rush back to France on the first morning plane.      

In the morning my father showed no improvement. Dr Jaïs came to me and said that the time was now to make a choice. Either we do everything for him or nothing—the former being another CT scan, operation and ventilator; the latter being pain medication and sure death. Dr Jaïs told me that he put my father’s chances of living at less than 20%. In his opinion the cause of the infection was surely the colon as he had just come off of four days of strong antibiotics, and this new infection meant there was a part of the body that blood was not reaching. The family discussed it over the phone and all agreed that we could not stand to put my father through any more of this hell. He had fought for all his worth, and it was time to return some dignity to his life. He could not go back though weeks and weeks more of that hellish state of being attached to machines and tied down like a tortured animal. I told Dr Jaïs of our decision and asked him how long my father had left. He said it could be 48 hours to a week.

I went and sat with my father then, just the two of us together. He was of sane mind, and although in a lot of pain and discomfort, he was ready for the end. I told him my mother was rushing back, and he should hold on. He said he was trying, but it was hard. I held his head and his hand, and he slipped away less than 40 minutes after my conversation with Dr Jaïs.

Summary

This has been a difficult story to write and an incredibly painful experience for our entire family. I have tried to be as informative as I can without going into too much unnecessary detail. The worse part of the whole experience was that we all had so much hope for a PVI cure. Indeed, there were other patients we met at Haut-Lévêque of similar profile to my father, similar age, permanent A-Fib, similar drug history and aversion, etc. They were successfully cured without incident and were checked out of the hospital in the promised week. I feel that mostly my father was just incredibly unlucky to have been the one out of 4,000 patients to die. That is just the way life is sometimes.

I want to make it clear that I am not angry at the French doctors or the treatment we received. They all did their best and, in case after case, never made an incorrect or ill-informed step in my father’s treatment. Dr Jaïs treated us like his own family and went out of his way to keep us informed even during his weekends and late at night—this despite my father moving on in the system and under the care of newer doctors.

I would advise patients considering treatment in a foreign hospital to consider the implication of things going wrong so far from home. This we did not. We simply sought out the best treatment center we could find and afford. Haut-Lévêque is known to be in the top three PVI centers in the world; so, in this we succeeded. However, being stuck in French suburbia in winter, with doctors and nurses that do not speak any English at all and the stresses of a family member in this dire state was a living nightmare for the family. The expense of the hospital treatment, hotels, flights and meals for multiple family members ran to well over $150,000. I have to be grateful that this did not occur in the USA as we initially considered. I have been told that in the US, ICU can cost up to $10,000 per day compared to France at around 1,500 euros per day.

I am bitter about the fact that none of his previous doctors advised him to seek PVI treatment sooner (or even told him it was a possibility). I believe that if he had been treated even 12 months sooner, he would still be alive today. His doctors in South Africa particularly in Durban were negligent in keeping this information from a sick man who was clearly not tolerating the rate control drugs. It took my researching the internet to learn of PVI – a disgraceful fact given the situation.

I believe that in hindsight, we made the right decisions in seeking PVI treatment for my dad. As Dr Jaïs pointed out, the alternative was certain and unappealing—a continued decline in quality of life, continued use of rate control and diuretics followed by likely kidney failure (diuretic use) or stroke and sure death. With the PVI at least my dad had a fighting chance of regaining his life and his strength. Seeking a cure was more fitting with how he lived his life. My father was a fighter, and he went out fighting. For that I am grateful.

I hope that you have found this thought provoking and useful in your consideration of PVI. I wish you success and good health.

Please feel free to contact me with any questions should you feel the need: mhadfield(at)gmail.com.

Mark Hadfield

The author of A-Fib.com would like to express his gratitude to Mark and his family for sharing their difficult experience.

Return to A-Fib Patient Stories by Posting Date