Steve S. Ryan: Finding My A‑Fib Cure by Early Focal Catheter Ablation Procedure in 1998
by Steve S. Ryan, 2002, updates 2010, 2011 and 2012
Steve Ryan had his first A‑Fib attack in early 1997. He was 56 years old and was in apparent good health (5’10”, 185 lbs.). He trained for and ran 400 meter dashes and 5K’s. He and his wife resided in Los Angeles, California. He worked on the camera crew of the NBC soap opera “Days of Our Lives” which involved frequent late nights and overtime. Cured of A‑Fib in April, 1998, this is his story in his own words.
The first time I had a noticeable attack of A‑Fib was Sunday evening January 19, 1997. It felt like I had mice running around in my heart. My pulse would get weird and irregular, then start racing. Just days earlier I had undergone laser surgery on my face and was in a lot of pain. I can’t think of anything else that might have triggered the A‑Fib.
January 1997: My A-Fib Diagnosis
By the time I got to a hospital emergency room that Sunday evening, my pulse was nearly back to normal and I was sent home. My physician, Dr. Glenn Gorlitski, sent me to a specialist, Dr. Robert Levin with Cardiology Consultants of Santa Monica. On Friday, January 24, as soon as they hooked me up for a treadmill test, they could see from the ECG that I had A‑Fib.
I had “Paroxysmal” A‑Fib (episodes that stop on their own, and last anywhere from seconds or minutes, to hours or up to a week). My A‑Fib attacks would usually be short but would recur frequently, sometimes around twenty a day. Other days I wouldn’t have any attacks. Every once in a while I’d feel lightheaded and almost lose consciousness. I later found out that, after an episode of A‑Fib, my heart would sometimes stop beating for several seconds before kicking into normal rhythm.
Dr. Levin prescribed the blood thinner warfarin (Coumadin 5 mg) for me to make sure I didn’t have a stroke. (In A‑Fib, the chambers of your heart aren’t pumping out properly. Blood clots can form and travel to your brain causing a stroke. Blood thinners like Coumadin and aspirin help keep these clots from forming.)
During this time I was on and off several different medications. None of them seemed to do much good.
- Toprol-XL (metoprolol) 50 mg (a class II beta-blocker)
- Digoxin (Lanoxin 0.125 mg)
- Quinidine Glaconate (quinidine) 324 mg (class 1A)
- Procanbid (procainamide) 1000 mg (class 1A)
- Betapace (sotalol) 80 mg (a class II and class III drug)
- Cordarone (amiodarone) 5 mg (a class III and class I drug)
- Toprol-XL did slow down my heart rate significantly. My pulse got down in the 30–40 beats per minute range which isn’t healthy. I still had A‑Fib but it slowed down along with my pulse. Cordarone (amiodarone) made me impotent and caused me to cough up blood.
October 1997: Disability Leave
Since I worked around heavy, moving equipment, I had to stop working and go on disability. This really motivated me to find a cure.
At this point my life was pretty much in the tank. In addition to having to quit work, I had to give up training for the 400 meter dash and all sprinting. I still tried to jog while wearing a heart monitor (Polar Heart Rate Monitor available in sporting goods stores). If I went into A‑Fib when I started jogging, I’d stop and just walk for a while. When I’d go into A‑Fib, I’d first feel a fluttering sensation in my chest; then shortly afterwards my pulse would jump from 60 to 120 or higher. Being dedicated to running I’d sometimes run with A‑Fib. My pulse would be very fast during the whole run. This probably wasn’t a smart thing to do. A lot of time when relaxing after a run, I’d go into A‑Fib.
November/December 1997: two Failed and One Aborted Ablations
Dr. Levin sent me to Dr. Ibrahim Helmy, an Electrophysiologist at St. John’s hospital in Santa Monica. He performed catheter ablation procedures on me on two occasions, November 18 and December 8, 1997. He only worked in my right atrium to eliminate Atrial Flutter (which I wasn’t diagnosed with). These procedures seemed unsuccessful to me. (It wasn’t until later that I learned ablations in the right atrium have very little chance of curing A-Fib, which generally originates in the left atrium. “Waste of time” comes to mind, but to be fair, this was 1997, early in the development of the procedure).
He referred me to Dr. Wee Nademanee at the USC Medical Center who tried to perform a catheter procedure on December 16, 1997. He attempted to get into my left atrium but had equipment problems (his hard drive crashed forcing him to stop; but I think the EP was also having difficulty getting a catheter into my left atrium). [see Editor’s Comments below]
My Research Begins With a Vengeance
Now I was discouraged and even desperate. My wife, Patti, encouraged me to get on the Internet and research Atrial Fibrillation for myself, instead of relying on my medical advisors. I did this with a vengeance. Armed with a medical dictionary, I spent a lot of time in medical libraries reading everything I could find about A‑Fib including medical journals, medical text books, and medical research papers. I even learned to read my own ECG.
I copied all my medical files and sent them to every US doctor and researcher in A‑Fib who might help me or give me information. I spoke with each over the phone.
Ultimately, I consulted and was examined by additional doctors including Dr. Christopher Wyndham of the North Texas Heart Center in Dallas, Texas; Dr. Richard Page at the University of Texas Southwestern in Dallas, Texas; and Dr. Tony Pacifico at Baylor University Medical Center in Houston, Texas.
March 1998: Search Leads to Bordeaux, France
My research and conversations with experts in A‑Fib eventually led me to look for my cure outside the U.S. The world leader in the treatment of A‑Fib was in Bordeaux, France, Dr. Michel Haïssaguerre. (The very first article I read and doctor I talked to, Dr. Frank Marcus of the University of Arizona, mentioned Dr. Haïssaguerre’s work. But at that time it never occurred to me to contact Dr. Haïssaguerre directly. Going to Bordeaux, France, for treatment seemed like going to Mars! )
After months of research and talking to other doctors, I finally decided to see if Dr. Haïssaguerre could help me.
Writing and faxing to a hospital in Bordeaux, France, wasn’t all that difficult, but calling on the phone was quite a challenge even though I thought I knew enough French. After reviewing my records, ECGs, etc., Dr. Haïssaguerre thought I would be a good candidate for a Focal Point Catheter Ablation* procedure (early version of Pulmonary Vein Isolation/Ablation).
In his research and practice he had identified areas of the heart that produce the extra pulses of A‑Fib. He would pass a catheter from the groin up through a vein to the heart, then using RF energy he would cauterize or isolate the diseased heart tissue that was producing the extra pulses. He had a good deal of experience with this procedure.
It was quite a mental leap for me and my wife to even consider going outside the U.S. for treatment. We had to find out how much it would cost, and whether my insurance would cover any or all of it. I was very fortunate to be covered through my company GE/NBC by Blue Cross/Blue Shield of Alabama. Once they got all the information they needed, I was pre-approved for treatment in France, though of course we had to pay for travel and lodging. (The final bill in 1998 for twelve days including two major and two minor procedures in the Bordeaux hospital was $9,235.04, far less than we would have paid in the U.S. We paid the bill by credit card. My GE/NBC insurance later reimbursed me 100%, though I first had to translate the bill from French to English.)
A cancellation in their schedule opened a slot for me sooner than expected. Imagine―we had to get updated passports, make travel and lodging arrangements, work out how to pay the French hospital, etc. in just a few weeks. The biggest obstacle came from a company called United Health Care which administers GE/NBC’s disability program. Because A‑Fib frequently reoccurs after the first procedure, Dr. Haïssaguerre requested I stay in the hospital in France for eight–ten days (I actually wound up staying longer). But United HealthCare insisted on a return to work date earlier than that. I could have lost my job if I was absent without leave. But thanks to the Family Medical Leave Act and a sympathetic manager at GE/NBC, I was able to get an unpaid leave of absence from work and later return to my same job.
April 1998: France Here We Come
My wife, Patti, and I flew into Paris Friday, April 16, then took a train (the TGV) to Bordeaux. I was due to check into the French hospital Sunday, April 19, but I showed up there Saturday to make sure we could find our way and get to the right department. When I checked into L’Hôpital Cardiologie de Haut-Lévèque, Ave. de Magellan, 33604 Bordeaux-Pessac on Sunday, my A‑Fib symptoms had disappeared! (While few Bordeaux residents spoke English, Dr. Haïssaguerre did.) He reassured me that this was not unusual, that 30% of his patients have the problem of disappearing symptoms when they arrive.
Everyone at the hospital was remarkably friendly, though very few spoke English. They gave me a big room with two beds so that my wife, Patti, could stay with me when she wanted. The food was incredibly good. Almost every dish had its special French sauce. Someone arranged that I get double portions of the entrees which I very much appreciated. The nurses’ stations seemed well staffed with competent, caring nurses.
My Pre-Ablation Testing Begins
On Monday and Tuesday I went through several tests and monitoring procedures in preparation for my catheter ablation procedure which was scheduled for Wednesday. They took X-rays and set me up with an RF heart monitor that allowed me to stroll around rather than be confined to bed. I took advantage of this to explore the hospital grounds which were very scenic. (One time when I walked into an elevator, the floor nurses ran around looking for me because they had lost the RF signal. From then on I told the floor nurse any time I was going to use the elevator.) I also had a 12–lead battery-operated ECG on for a day. Sometimes I also had on a Holter monitor which records your heartbeats when you press a button. I had so many monitor electrodes on my chest you could hardly see the skin. But I still wasn’t experiencing any A‑Fib symptoms. They had me do ten squats with the ECG leads attached, but even that didn’t work.
Everyone warned me about the test I’d have to take on Tuesday. I would have to swallow an Ultrasound (Doppler) tube which would be used to check for blood clots in my heart. If any were found, they couldn’t do the procedure. I gargled an anesthetic, then I had to swallow this huge tube. It was tough not to gag on it. After what seemed like an awfully long time, they finally pulled out this tube and told me they found no blood clots in my heart. Even the stress of this test didn’t bring on any A‑Fib attacks. Later that day they put me on a stationary bike, but I still wouldn’t go into A‑Fib.
Dr. Haïssaguerre reassured me that he had other means of stimulating my A‑Fib, and that this was one of the reasons he had asked me to plan on staying eight–ten days in the hospital. He also told me I would be awake during the entire catheter ablation procedure so that I could interact with the doctors, give feedback, etc. Tuesday evening a nurse came in and shaved off every hair around my groin.
My Procedure Day Arrives
Wednesday morning, April 22, my catheter ablation procedure began. In my room the attendant put me on a gurney and wheeled me into the elevator and down to the procedure room, then he and a nurse transferred me to the operating table. The nurses made me as comfortable as possible, since I might be on my back for a long time. One nurse wore a lead shield, and they all worked behind some kind of glass or plastic shields. I wondered how much fluoroscopy radiation I would be exposed to as they used the fluoroscopy to guide the catheter through my heart.
They gave me a local anesthetic in my groin and made a small cut in a vein there and inserted the catheter. I was relieved that it didn’t hurt much at all. Dr. Haïssaguerre tried to induce me into A‑Fib, first with a hormone similar to that produced during exercise, then with a drug that made me feel somewhat dizzy and strange. On his cue I pushed and held my breath. But nothing worked.
Finally, using the catheter he stimulated me into A‑Fib. But once started, the A‑Fib wouldn’t stop. After 20 or 40 minutes and use of an intravenous medication, the A‑Fib stopped. Shortly thereafter I spontaneously went back into A‑Fib which is exactly what they wanted. The heart tissue that was producing these extra pulses was identified as the right superior pulmonary vein ostium area (an opening from one of the veins coming from the lungs into the heart).
Anytime something changed or when they started a new procedure, Dr. Haïssaguerre or his colleague, Dr. Shah, would walk over and talk to me about what they were doing, what I should expect, what I might have to do, and to ask me how I was doing. Their care and attitude was incredibly reassuring and made me feel confident. I had certainly come to the right place. (They spoke among themselves in a combination of French, English, and what I think was a Bordeaux dialect that was unrecognizable to me. Sometimes, like when I went into spontaneous A‑Fib, it sounded like a French soccer match with all the cheering! They certainly had a great camaraderie and enthusiasm for what they were doing.)
Dr. Pierre Jaïs, a colleague of Dr. Haïssaguerre, guided the catheter from my right atrium through the transseptal wall (the heart tissue that separates the right and left atrium) and into my left atrium in less than five minutes. This is a rather tricky procedure in which he was obviously very skilled and experienced. Then Dr. Haïssaguerre took over. With RF energy from the catheter tip, he cauterized part of the area of my right superior pulmonary vein ostium. He told me that the tissue there did look diseased. He also checked all the other typical focal point areas of the heart, but they looked OK. They gave me some medication so that I wouldn’t feel the burning in my heart tissue.
With someone who is continuously in A‑Fib, they treat the tissue and the A‑Fib stops― indicating the diseased tissue has been cured. But this wasn’t possible in my case. Since I hadn’t been in fibrillation before the procedure, it was hard to determine if all the diseased tissue was ablated. Dr. Haïssaguerre said he couldn’t verify that he had taken care of all the bad tissue at the right superior pulmonary vein ostium. He also said he had found Atrial Flutter in my right atrium which his colleagues would fix.
Dr. Haïssaguerre went up to see my wife, Patti, to fill her in on what had happened. Meanwhile his colleagues worked on me for another two hours. I felt pain in my right shoulder which they said was normal. They had a lot of problems stopping the flutter in my right atrium in the isthmus between the atrium and the ventricle, possibly because of my two previous ablations. They said they were only able to block the signal in one direction and not the other. They were obviously getting tired. I had been there for over nine hours and was the second person they treated.
Back in my room I was attached to an IV with an anticoagulant, Heparin, dosed out to me automatically to prevent blood clots and stroke. Once I was able, I could go to the bathroom and walk around with this IV because it was battery operated when not attached to the wall plug. When this treatment was over, the nurses gave me injections of an anticoagulant in my belly three times a day. I was wiped out and famished at the same time.
I was pretty much out of it Thursday and slept all day. I don’t remember much of that day. Friday Dr. Haïssaguerre and Dr. Shah came by to talk to me about what had happened and my prognosis. They repeated how they weren’t sure if they had taken care of all the diseased tissue in the right superior pulmonary vein ostium. They also said they weren’t certain they had achieved blockage of my right atrium flutter because of all the previous catheter ablation lines from my first two procedures. They told me they would do a follow-up catheter evaluation of me Wednesday. They suggested that over the weekend, when and if I felt up to it, I should walk up the stairs to see if I could go into A‑Fib.
My A‑FIB Returns
That weekend I did walk up the stairs and even walked outside in the hospital’s park. Sunday, April 26, around 6:15 pm my wife, Patti, and two nurses were in the room with me when I went into A‑Fib big time. I felt my heart bounding around, then my pulse speeded up. This was the first time I was ever happy about going into A‑Fib. I knew now they could find exactly where the A‑Fib was coming from. The nurses got the portable ECG unit and documented my A‑Fib. They also had me wear a 12–lead 24–hour battery operated ECG monitor. I didn’t come out of the A‑Fib attack till around 9:00 pm which was the longest A‑Fib attack I had ever had.
Monday Dr. Shah said they would do another catheter ablation procedure on me. That night I was going in and out of A‑Fib all the time. The nurses felt fortunate to be able to document my attacks, because these ECGs of my A‑Fib helped the medical staff pinpoint the source of my A‑Fib.
My Second Ablation
Due to a cancellation, my second catheter ablation procedure was moved up to Tuesday, April 28, at 2:30 pm I went through the same procedure as the week before with different nurses but the same doctors. This time I had no trouble going into A‑Fib. Dr. Haïssaguerre later said he just touched the right superior pulmonary vein ostium area and it flew into A‑Fib. (After ablation some of the electrical connections may recover, causing the same ablated area to again trigger A‑Fib.) Dr. Haïssaguerre said he wound up cauterizing one third of the ostium area. “We try to keep the burns to a minimum,” he said. Again he went to see my wife, Patti, to tell her that he felt very good about this procedure, that he thought he had eliminated the focal point A‑Fib.
Dr. Shah and a second doctor came in to work on my right atrium to get rid of the atrial flutter. They wound up mapping my whole right atrium. Instead of the normal 20 watts of RF energy, they used 60 watts on me to block the atrial flutter. I didn’t even feel it. They said they couldn’t use any more RF power without risk of damaging surrounding tissue. Either my isthmus was too thick or the flutter path was too deep to achieve complete blockage. They didn’t finish till 8:30 pm.
After they had pulled out the catheters and started to clean me up, I vomited all over the floor. There was blood in the vomit. It looked the color of coffee grounds. The staff thought it might be a sign of ulcers. For some reason this did not bother me at all. I really felt cured of my A‑Fib. This vomiting was nothing compared to getting rid of my heart problem.
The next day, Wednesday, I recovered a lot faster than before. By Thursday I was walking around. Because I had vomited blood, they tested me for ulcers. Again I had to not gag while swallowing a lighted tube that took pictures of my stomach. They found four little, seemingly new ulcers. Dr. Haïssaguerre and the ulcer doctor thought medication would easily clear these up. These beginning ulcers might have been caused by me not eating since the evening before the procedure, being on anti-coagulants, and/or the strain and length of the operations. As the doctors predicted, once I took the medication, I was cured and haven’t felt anything related to ulcers since.
We asked Dr. Haïssaguerre if he could tell from having examined and tested me, what started or caused my A‑Fib. He couldn’t say for sure. He suggested a viral infection may have started it.
Success: I’m A‑FIB Free!
I was supposed to stay in the hospital a few more days so that the nurses could give me anti-coagulant shots and monitor the anti-coagulant levels in my blood. But I convinced them I could give myself the anti-coagulant shots in my belly at the right times, and I became an outpatient Friday, May 1, 1998. (Part of my motivation was to save money on hospital costs. I still wound up staying in the hospital 12 days, two more than we had planned.)
May 1997: Back Home
Once back in the States, I did a follow-up examination with a colleague of Dr. Haïssaguerre’s, Dr. Michael Lesh of the University of California at San Francisco Medical Center.
I was A-Fib free! Even though the doctors in France couldn’t verify they had fixed the atrial flutter in my right atrium, I didn’t have any flutter or fibrillation. I returned to work and felt terrific. The only medication I take is a baby aspirin (81 mg) once a day with breakfast. Annual checkups have revealed no A‑Fib symptoms. I resumed my running. I work and train very hard with no apparent side effects.
I feel so fortunate to be free of A‑Fib! I thank God for getting me through this and pray I can use the rest of my life to help others with A‑Fib.
A Website is Born
In 2002, I started a website, Atrial Fibrillation: Resources for Patients (www.A‑Fib.com) written from a patient’s point of view, and in plain English, not medicalese. It’s my way of passing on to others what I have learned (and will continue to learn) about Atrial Fibrillation. I want to spare others the frustration, depression, and debilitating quality of life the disease caused me.
Minor A-Fib Attack in 2010?
After being free of A‑Fib for over twelve years, I had a one brief A‑Fib attack in September 2010. The symptoms were relatively mild for the most part, but it was noticeable. (I wasn’t really surprised and somewhat anticipated it. When I had my ablation back in 1998, they only ablated one of my Pulmonary Veins. Nowadays they routinely ablate all four.)
Because my natural heart rate is so low (48–54 beats/minute from years of running), my doctor was reluctant to put me on meds which might further slow down my heart. We just waited to see if other A‑Fib attacks would occur. (I do use the Natural Remedies protocol as a preventive measure as described at A‑Fib.com. The only other med I am on is the statin Crestor 10 mg every other day to lower cholesterol.) There was no subsequent episode. Guess it was just a fluke.
2011-2012: The Website Births a Book
My website, A‑Fib.com started in 2002, has flourished and given birth to a book. I had not expected the need for continued patient education and advocacy. Ten years ago, I had thought that after the FDA approved the Pulmonary Vein Isolation procedure in the U.S. that the need for independent, unbiased patient-focused information would diminish.
Boy! was I wrong.
Just the opposite has happened. Atrial Fibrillation is epidemic among the aging baby-boomer generation. Among the general population, it’s predicted to afflict one out of four as they move into their “retirement” years.
Before the widespread use of the web and Internet, there wasn’t much information on Atrial Fibrillation available for the layman. And what was found was often out-of-date. Now, we have the opposite situation. Maneuvering the sea of medical information, conflicting opinions, and technical jargon continue to confuse the average A‑Fib patient. Who said it? “We are drowning in information and starving for knowledge.”1
My mission continues—to spare others the frustration, depression, and debilitating quality of life that Atrial Fibrillation caused me.
Steve S. Ryan
Malibu, California, USA
It may not be accurate to say that I had three failed ablations before going to Bordeaux, France. It’s more precise to say in 1997 I had two catheter ablations of the right atrium, and one aborted attempt of the left atrium. Once in Bordeaux, I had a successful “Focal Point Catheter Ablation” in the left atrium. During my ten-day stay in the hospital, do to recurrence I had a second ablation a week after the first. So does that add up to two failed right atrium ablations and two left-atrium ablations?
Looking back to 1997, I see that the two right atrium ablations were probably a waste of effort for my A-Fib. We know now that A-Fib usually originates in the left atrium. Today, when ablating the left atrium, most EPs will also ablate the right atrium during the same procedure (a two-for-one). This is a precaution against any rogue A-Fib signals originating from the right atrium, as well as to address diagnosed or undiagnosed Atrial Flutter.
- Rutherford David Rogers. American librarian: The New York Public Library (1954-1957); Library of Congress (1957-1964), Stanford University (1964-1969) and Yale University (1969-1985).↵