A-Fib Patient Story #2
Robert Dell’s A-Fib Experience: “Daddy is always tired.” Daddy needed his life back.
by Robert Dell, 2003, updated 2006
My then 5 year old son Malcolm – he is now almost eleven, finally got to go with his dad to work. I was the master scenic artist for the ABC soap opera “One Life To Live” in New York City . He saw the cameras, the actors, and I arranged for one of his drawings to be used on the show at the Community Center set. His green Tyrannosaurus Rex looked great on camera. He told me that it was such a good drawing that he thought it was too valuable to leave there, after it was already prominently established in two shots. My good friend Roger, who is the production designer, convinced Malcolm that it was so good that we wanted every one in the country to see it.
We were walking up the 5 flights of stairs to look down on the show from the lighting grid when I felt out of breath and very tired. My heart was really racing. Maybe I ate too much sugar. After all, I had been the captain of my cross country team and I was offered a running scholarship 25 years ago. Like many of you, I was also athletic and also lived with daily stress, but I did not know what A-Fib was until I was 47.
Something was wrong. I went to the ABC company doctor and he administered an EKG. He said that I should go to the hospital, or at least see a cardiologist, and he gave me a Xeroxed copy of the print out. On the way home an hour later, everything felt fine.
The cardiologist, Dr. David Southren said that I had atrial fibrillation. I was given Tenormin and he asked me to call him immediately if it happened again. He would arrange for the hospital emergency room to admit me so that he could monitor the situation, but it might never happen again.
This was not the case. After 6 visits to the emergency room in a little over a year, I knew what it is like to be on a first name basis with the staff and a preferred repeat customer at the hospital emergency room cardiac unit.
Paroxysmal Atrial Fibrillation, with a heart rate sometimes higher than 240 was my scenario. It felt like there were a bunch of scared bullfrogs in a bag inside my chest that were trying to jump out. Sleep (or any other time my heart rate went down), after a stressful day caused it for me.
First atenolol was my med., and after that failed I was switched to flecainide (Tambocor) with a daily dose of 150 mg. After my regular hospital routine was established, Dr. Southren agreed, that with initial careful telephone monitoring, I could self-convert using a “cocktail” of up to 250 mg of flecainide at one dose. This worked like magic after about 20 – 40 minutes.
My major complaint was the side effects of Tambocor. It not only made me tired, but I also felt as if I had a constant alcohol buzz. This was onerous to me because I stopped drinking when I was 19 years old because I wanted more consciousness, not less. The worst part was that it had severely damaged my ability to function in my main area, experimental visual art. Everything looked flat. I could no longer see shapes, patterns and line flow. It was if I was relegated to half of a life. I knew what was happening, and there seemed little I could do to make it better.
Illness was not new to me as I had been spitting up blood from a lung condition called bronchiectasis coupled with chronic bronchitis for over fifteen years. I had stopped smoking when I was nine. The Deborah Heart and Lung Center doctors informed me that I had to live with it, although I might drown in my own blood while asleep if the rare chance of sudden vein rupture occurred. This made me somewhat reluctant to use Coumadin or aspirin.
The A-Fib specter that we all live with was not much of a change, except that I now had two negative possibilities to live with, instead of one. About 2 years into A-Fib, I was diagnosed with hypothyroidism, which makes A-Fib control a tricky juggling act. At this time, GERD and a hiatial hernia were also discovered. For those of you who are keeping score, I also get occasional visual migraines.
Doctor Southren then suggested that I consult with a well-known electrophysiologist in New York City for a second opinion. At that time, the MAZE Procedure was the rage. When I suggested it as a possibility, the electrophysiologist said “I would not do it to a dog.” In his opinion, it seemed to border on mutilation and was not always successful. To me, it sounded very interesting, as my feelings of desperation were starting. I contacted several well-known medical centers for information.
As I became somewhat computer literate, the possible long term side effects of my medications became apparent as I searched the web. My visual work was paid for by my day job. ABC, particularly Roger, was always very helpful in arranging, or at least looking the other way, when I needed time off for short term research fellowships (MIT, Fulbright, etc.). The best part of my life, other than my family, was taken away by this condition and the meds. “Daddy is always tired.” Daddy needed his life back.
Then I found out that Pulmonary Vein Isolation, a potential cure that used catheters, was being developed. However, since I had multi focal points, my case was very complicated.
Sometime later, Doctor Southren, who was also very cautious about a surgical approach, surprisingly said that in his opinion there was now a possible viable cure for me. Dr. Grant Simons at Englewood Hospital in New Jersey was in charge of a new center that could help. He is one of the Duke University group and was courted by several major medical centers before he settled in at Englewood. He had the latest computers and mapping equipment, which produced a three dimensional map of my heart’s electrical pathways.
Now there were the money issues to consider. Fortunately, Aetna, my insurance company, lists ablations as just “procedures.” They do not consider them heart operations, even though they are quite costly. I received approval. My primary care physician, Dr. Richard King and my lung doctor, Dr. Clement Osei both agreed that an ablation was probably a wise move, and their offices helped with the insurance details.
The big day came. No, not the operation, but my visit to Dr. Simons, who already had reviewed all of my medical files. He told me that the procedure was not recommended for everyone. After the usual cardiac exam and a short re-review of my massive folder he said, to my surprise, that I was an ideal candidate. Now I was really worried. You know how it is, when a dream starts to become real, like on your wedding day; this is forever, or so you think.
Despite this good news, the possibility of undergoing the procedure and actually doing it was somewhat scary, to say the least. I talked it over with my wife and children, and they agreed with me that this was the best decision — if I really felt it was. My older sons are both in the thirty’s range.
Now the big day did arrive. At 6:30 in the morning my wife Siena and I arrived at Englewood’s admitting area, and filled out the usual forms and answered the usual questions. By this time, I had the hospital packing routine down to a science; so many pairs of sox, sweat pants with a draw string, light and heavy reading, zippered sweat shirt, comfortable slippers, etc.
All of the hospital staff were very sweet and considerate. Dr. Simons said hello. I am in my gown and on my back, and the IV needles are inserted. This part was easy, familiar and oddly enough comforting, as I came to associate this routine with my A-Fib being under control due to my many emergency room visits.
I do not remember them shaving my groin. I do remember the green suits and the damned uncomfortable operating table. Where are the bed sales people when I need them?
When I left Deborah Heart and Lung, I got solicitations for above ground mausoleum space for years. I had two major rotator cuff operations — one for each arm– during my A-Fib time which resulted in the implantation of metal pins. You can get on some strange mailing lists.
I remember laughing to myself about this as I went under and wondering if I should have reserved a space. I was a passenger, not the pilot, and the plane was taking off. I made my peace and drifted off.
After 8 hours when she finally saw me, Siena said that my skin looked an odd shade of yellow with some bluish areas. Doctor Simons had spoken to her and gave her the results. My case was rather complicated. I have an extra pulmonary vein, and there were over a dozen places to be ablated, rather than the usual two or three. He was confident, yet cautious.
I vaguely remember seeing Siena, my brother David and his son and hearing thunder. My back was in agony. The catheter really hurt, but this was only a prelude to the joy of having it extracted. Was there a golf ball on the end of that thing? The severe July thunderstorm that night knocked down large trees that blocked our driveway. They cordially welcomed Siena home after her easy day at the hospital.
The next morning, I walked around a lot and felt well, yet sore. I could see clearly again! The shapes in the room were so distinct and beautiful. I was not on Tambocor. My life was back. The day passed and Malcolm was relieved to know that daddy was alive, which he proved to his satisfaction when he promptly jumped on the bed and his dad. Things were looking up.
Early the next morning, I was back in A-Fib. I was despondent. Here I go again. For the first 3 weeks until the scar tissue forms, you can still have A-Fib, but be cured in the long term. I was converted to normal heart rhythm and was sent home.
Then the problems started. About a week later, I was back in the Emergency Room with Dr. Southren. It felt as if the ablation had only made the heart really angry. It was not A-Fib, but I had nasty premature atrial and ventricular contractions. I had a lot of trouble walking on level ground when this happened. A-Fib was never this bad. What had I done?
This subsided with the usual Tambocor cocktail. I returned home and shortly felt better. I was only on Coumadin during this time as a regular medication.
A week later I started walking the 3.2 mile trail around Rockland Lake with my friend John at our usual sub 45 minute pace. After I sprinted the last 200 yards, my heart felt fast, yet strangely calm in a way I had never experienced it before. I remember when I used to run that my heart would sometimes race at over 220 times a minute suddenly and then calm down just as fast. This would occur hours after the race was finished. Dr. Southren had said that my pre – ablation A-Fib symptoms, coupled with my mild mitral valve regurgitation were indicative of a rheumatic heart.
I returned to my studio and finished 2 small sculptures for a museum show in Iceland and a gallery exhibition in the Chelsea section of New York City. Life was good.
Then things really went downhill. We were on our way to England and Wales (first time) for a few weeks in August. We were taking Malcolm to the Kimura Shukokai International Karate Tournament in Birmingham. We had a great time and the people were marvelous. He was third in kata in his age group, with 16 nations competing.
However the trip to England was the journey from hell, including 6 hours on a runway until the flight was canceled. This started an A-Fib episode and my return to my pre-ablation medications. Rats.
In September, 2002, I had ablation number 2. This one wasn’t so bad. The nurse shaved my groin before I went under. Her tact and demeanor made this potentially awkward situation a non-entity. This time I asked for padding under my back for which I was later thankful. I remember waking up during the procedure and feeling my heart racing. I spoke to Dr. Simons and calmly asked if the operation was going well. He later said that I basically was not pleased to be there and that I expressed that in a variety of ways, which sometimes happens in a patient’s sedated condition. No conscious offense given and none taken.
When I woke up later that evening, I got my usual loving leap from Malcolm and the warmth and comfort from Siena that made me feel like crying. I was defenseless emotionally, but at least my back did not hurt and the catheter golf ball was replaced by a small marble.
During the night, I woke up in a violent coughing fit and found that my groin was covered with hot liquid. I had passed a large blood clot that looked like a small bloody chicken liver. The nurses were right there and I was soon asleep.
Ablation number two eventually drove the A-Fib away, although it took several weeks to leave and it expressed extreme displeasure.
A week after the second PVA, I was back in the hospital, feeling like the character John Hurt played in ALIEN, with the nasty critter eating its way out of my chest. It got worse as we went to the hospital. The EKG readout resulted in a panic at the hospital, as the computer was registering it as life threatening. Dr. Simons and 20 very anxious and out of breath people rushed into the room from all over the hospital, within one minute, just as I returned to sinus. Dr. Simons quickly determined that it was a highly unusual reading which was exacerbated by the medications — atrial fibrillation with atrial flutter. In retrospect, it was all quite entertaining. I remember laughing, but Siena saw all of them run into the room as the hospital public address sounded the alert. By this time, she was used to the routine.
The EKG readout looked like the classic physics example of a standing wave on all of the readouts. The strange readings soon continued with extreme variations in heart rates from minute to minute, with highs of 140 to as low as 50. Massive medications were given and then regular A-Fib—including heart rates of 240 started. A few hours later, all was quiet. The portable defibrillator unit and the long needle for emergency last resort were kept by my bedside through the night. My eldest son Rob was thankfully there, which really helped. This heart thing was starting to get ridiculous.
After observation overnight, I was sent home on 300 mg of Tambocor, plus low doses of lopressor and digitalis. Despite the calamity of the first 2 weeks after the operation, I am feeling much better now, with no problems. The Tambocor was stopped after 13 days. There have been no problems since then. However, I was bothered by nasty premature ventricular contractions which ended some months ago. I also had headaches and a brain power loss. Now it is six months past number two, and things are still improving, but my energy level is a little lower than I would like. My consciousness has returned, along with my vision. My visual work is getting back to its pre A-Fib level. Malcolm’s dad has energy and Siena is no longer chained by “our” illness. She is back in her studio preparing for her next NYC solo show.
Doctor Simons called me at home a number of times throughout the ablation ordeal to see how I was feeling. What a sweetie.
I no longer live in the A-Fib shadow and no longer take the drugs. My life is back. I no longer have to be content with less. All is now quiet. The ablations have given me my life back. I no longer have to worry about what pills, foods, or attitudes I should have to avoid A-Fib. I no longer go to sleep at night wondering if I will wake up with A-Fib, or not wake up at all due to a stroke.
Those who do not want an ablation will naturally dwell on the negatives. My cure was fairly rougher than the usual. I hope that those who read this personal account will forgive my sentimental rendition with its sarcastic humor. Please accept my apologies for any factual or technical errors. However it is my story, and this is how I remember it.
I discovered the A-Fib group http://groups.yahoo.com/group/AFIBsupport in September, just before my second ablation. Your help, information and support will never be forgotten. A special thanks to John Codling for his kind, timely support and information and to Steve Ryan for his encouragement for this cathartic writing endeavor.
I was the first patient ablated for PAF at Englewood, using this new technology. The hospital is now running major 3/4 page newspaper ads about their capabilities, with me as poster boy. I get no money for this, it’s just community service. This story is written in the same spirit. Hopefully someone will find this helpful.
The only thing worse than having an ablation is not having an ablation.
Update: May 2006
It is now almost 4 years since the ablations. After reading all of the reports about the potential of silent A-Fib, I again “bit the bullet” and had the 30 day event monitor evaluation. The event monitor measures any irregularities that occur in addition to any reported events by the wearer.
Verdict: No A-Fib, silent or otherwise. A few PACs and a few moments of fast heartbeat, often while walking upstairs, etc.
Life is good…
E-mail: vaettir (at) aol.com