A-Fib Patient Story #68

Living with A-Fib for Twenty Years! For Former Pro Basketball Player, Medication and Proactive Perseverance Are Working.

Jon Darsee, Austin, TX, USA

By Jon Darsee, Austin, TX, January 2014

Update May 2015: Jon writes that he may have had a mini-stroke (TIA). So, he changed from a pill-in-the-pocket strategy to taking flecainide daily and is taking the novel anticoagulant Xarelto. Read more at the bottom of the page.

1993 FIRST LONE A-FIB ATTACK

I was diagnosed with Atrial Fibrillation in the Autumn of 1993. I was 34 years old. Doctors told me that I had ‘Lone’ Atrial Fibrillation which meant that I had no structural disease or other risk factors. In other words, they couldn’t pinpoint why I had it. Neither could I. I didn’t drink or smoke at the time. I had pristine blood work and an other-worldly cholesterol level of 127. To top that, I was a former professional basketball player. The thought that this bodily temple could have any defect was beyond my comprehension.

It happened one Saturday morning racing down the New Jersey Turnpike jacked up on 3 double espressos. Fearing I’d be late to pick up my daughter for the weekend, I felt a thump in my chest followed by a rapid–fire series of beats that didn’t let up. Every few seconds I found myself breathing deliberately, sucking in as much oxygen as possible. I felt lightheaded. I pulled off the highway and took my pulse. It was irregular and 2 ½ times my normal heart rate.

Ironically, I was a cardiology equipment salesman—specifically, I sold heart monitoring devices used to help diagnose the very symptoms I was suffering from! I grabbed a demo recorder from the trunk of my car and attached some sticky electrodes to my chest. I snapped on the lead wires and recorded my ECG while sitting in the front seat of my car. Then I transmitted the signal over the telephone to a customer of mine. I will never forgive the nurse on the other end. She started laughing: “Holy S… Jon, you’re in A-Fib!”

It was a surreal feeling to think that I was becoming a patient. Being in the business, I was very familiar with the A-Fib demographic and knew that I didn’t fit. I was embarrassed to talk about it and convinced that it was a fluke. I’d worn heart monitors several times in training or for demonstrations, and I’d never had an arrhythmia.

STRATEGIES TO GET RID OF A-FIB

I quit coffee and caffeine cold turkey. I took more supplements, improved my diet, and stepped up my workouts. I made every physical change that I could think of. I devoured anything I could find about A-Fib and queried cardiologists about their struggles to diagnose and manage the disease. The irony that my daytime hours were dominated by efforts to get cardiologists to buy monitoring equipment to detect and help their patients with ‘my problem’ was never lost on me.

BUT A-FIB RETURNS—FAMILY PROBLEMS

After living free of A-Fib for two years, it happened again.  My life was complicated—I was in the midst of a divorce, plus I had two daughters from two mothers. I was traumatized by a fear of losing my first daughter to a distant state or to a new father. Both mothers felt that I could provide more financial help. Shame and guilt plagued me as I strove to fit the jigsaw puzzle of my evolving family into the cookie cutter portrait of parenting that I’d grown up with. 

ALONE WITH A-FIB, FEELINGS OF GUILT

There was also a lingering unease that lifestyle choices had led to this weakness in my heart. Memories of excessive partying in the ‘80s, particularly the decadence during my time as a professional basketball player in Brazil, haunted me. That A-Fib turned up only when I was under intense emotional stress led me to wonder if it might just be a symptom of a larger issue. The universal symbolism of a broken heart in art or literature allowed me to feel sorry for myself but also made me very curious. And I scoured the emerging literature on the Brain-Heart connection looking for answers.

I treated A-Fib like it was a character flaw…My ego could not take the thought of me being a patient.

IN DENIAL

I treated A-Fib like it was a character flaw. Although I worked in healthcare, I had an aversion to seeing doctors or taking medication. My ego could not take the thought of me being a patient. Here I was in the cardiology business embarrassed to talk to my friends! For the first ten years, I stayed in denial about having a ‘condition’. I perceived a relationship between stress and A-Fib that convinced me that, if I balanced my behavior emotionally and physically, this ailment might just go away. One day while sheepishly describing my story to a doctor, he cut me off mid-sentence, “This isn’t your fault!” I looked at him and thought how can he be so sure?

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ALTERNATIVE REMEDIES—“NEW AGE ARROGANCE”

I made an ardent effort to employ positive thinking, visualization and meditation to find that balance. I routinely self-monitored and became a master of taking my pulse and correlating it to the recorded ECG printout. I started a diary and kept a record of every time I went into A-Fib. I tried all sorts of alternative means to shake it. After reading a book about ancient healing techniques, I twice jumped into an ice cold bath to rid myself (it worked just like a cardioversion). I tried taking doses of magnesium so high that I got diarrhea, but the A-Fib seemed to leave quicker. I tried acupuncture. I was open to any form of alternative hope—anything to avoid having to admit a crack in my image. I thought that I was going to heal myself and then teach the cardiology world how I did it. A friend labeled my attitude “New age arrogance”.

WAKE-UP CALL—BOTH PARENTS DEVELOP A-FIB

The wakeup call came in the early 2000’s when in short succession both of my parents were diagnosed with A-Fib. My dad became fond of joking, “We caught this from you.” He helped me to accept the reality, and I no longer felt so isolated. By then my A-Fib was occurring at least once a year, and I had begun to correlate triggers to physical causes like alcohol use or a lack of sleep. I started taking aspirin daily and went to see two renowned cardiologists (Hardwin Mead, Palo Alto, CA and Jeremy Ruskin, Boston, MA). I was relieved when upon examination neither of them recommended a procedure. 

THE ‘UNWANTED COUSIN’—NO LONGER BLAMES HIMSELF

I began to approach A-Fib like it was ‘an unwanted cousin’. You know, the cousin who shows up unexpectedly and stays too long and whose behavior annoys you to no end. Like an unwanted cousin, A-Fib is a part of who I am. I let go of any sense of shame and stopped blaming myself, mostly. I realized that I’ve actually made a hell of a lot of good choices—that in fact, my lifestyle is rather tame, largely organic and benign. A cardiac electrophysiologist recently asked “Why not have an ablation and just end this?” Well, I admit I’m scared. And although I have been told that I’m a great candidate for cardiac ablation, I’m not yet ready.

RECENT A-FIB ATTACK—RECONCILIATION AND ACCEPTANCE

One recent morning that ‘cousin’ came knocking. There was no announcing its presence. It barged right in as if it owned the place. As I turned to climb a flight of stairs, my heart started knocking hard from the inside out, stealing my breath and causing me to grasp for the railing.

When I first realize I’m in A-Fib, a brief wave of nausea overtakes me. A sinking feeling descends that takes some mental fortitude to push through. In the first decade with A-Fib, I’d cancel everything and stay in bed waiting for the cousin to leave me in peace. Now I push it out with medication and proactive perseverance. Each time it comes I wonder, will this be the time it doesn’t leave? Am I gambling with the risk of stroke? Is it time to consider a procedure?

Two hours and 200mg of Flecainide later it was gone—the cousin vanishes down the street, my left fingers pressed to my right wrist counting for regularity, feeling for the beautiful, rhythmic simplicity I’ve come to cherish. My sense of relief borders on ecstasy. I once suffered A-Fib with horror, embarrassment and shame. Now I accept it without taking it personally, and I’m grateful for at least one side effect—the humility that came with finally embracing the condition.

MY NEW NORMAL

My new normal is minimal alcohol, daily aspirin and antiarrhythmics. The first lesson I learned in ‘94 was that I can’t ingest caffeine. Recently I’ve learned that alcohol is not my friend. One drink is okay, but one for several nights is not and certainly two requires an antiarrhythmic chaser. I know that when I am dehydrated, I am at risk, that when I don’t sleep, particularly when traveling cross country or overseas—watch out. I know that when I am in emotional distress, my risk increases. I know to take my meds on time, and I’m proactive; I take a higher dose of antiarrhythmic when at greater risk. It has been demonstrated that A-Fib is a progressive disease. And though I am still proud of avoiding surgery for 20 years, I am realistic about how long this approach might hold.

ANTIARRHYTHMIC DRUGS WORK FOR NOW

The antiarrhythmic Flecainide that I now take daily has all but eliminated episodes of A-Fib, and I seem to tolerate the drug well. But I’m wise to expect to hear that asynchronous, unexpected knock a couple times a year. The ‘cousin’ is less a reminder of fear today than of the uncomfortable reality.  When I’m on my game, I keep its visit to a couple of hours. And at all times I find solace, gratitude and even inspiration in the contrast between this chaotic beating ‘cousin’ and the wonderful rhythm of normal life.

Jon Darsee
E-mail: jdarsee(at)irhythmtech.com

UPDATE: May 22, 2015

Jon writes that he may have had a mini-stroke (TIA). In an article in EPLab Digest, he describes how a dull headache grew into a sharp pounding. He began to see spots, and his field of vision narrowed to a small tunnel. During a meeting he stumbled midsentence to find the words and was unable to speak for ten seconds. His left arm was mildly weak. In the months prior to his TIA, he had had more A-Fib episodes—10 in 12 months, and he was very symptomatic. The A-Fib attacks were very debilitating and would wake him up at night. Even one alcoholic drink could trigger A-Fib. He changed from a pill-in-the-pocket strategy to taking flecainide daily and is taking the novel anticoagulant Xarelto. See EP Lab Digest: Weighing the Different Treatment Approaches for Afib: From One Patient’s Perspective.

He is very interested in the work of Dr. Prashanthan Sanders from Australia who showed that intensive lifestyle changes can reduce A-Fib and even reverse fibrosis. But he realizes that he is already very healthy and doesn’t suffer from risk factors like obesity, hypertension, sleep apnea, diabetes, etc.

(It seems that Jon’s A-Fib has progressed and that “Medication and Proactive Perseverance” aren’t working as well as before. Since Jon is only in his mid-fifties, he is faced with the prospect of having to take anticoagulants for 30 or 40 years or risk another mini or major stroke. And the flecainide doesn’t stop his A-Fib attacks which are very symptomatic and wake him up at night. He may need to get a catheter ablation to stop his A-Fib, reduce his risk of stroke, and possibly free him from having to take anticoagulants for the rest of his life.) 

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Editor’s Comments:

Jon’s cardiologists didn’t recommend a catheter ablation because his A-Fib episodes were infrequent (once a year) and relatively short (around two hours). And though A-Fib is a progressive disease that tends to get worse over time, Jon’s doesn’t seem to be progressing much and seems to be under control with the antiarrhythmic drugs he takes. Though today’s antiarrhythmic meds often can have bad side effects, Jon tolerates his well. And current anticoagulant guidelines wouldn’t recommend that Jon take heavy-duty anticoagulants like Coumadin.

But when Jon does have an A-Fib attack, it can be very debilitating. Jon could certainly opt for a catheter ablation to make him A-Fib free if he so wished. But he would have to be very assertive with his Electrophysiologist (EP). Catheter Ablation is considered a low risk procedure, but there is still some risk. EPs might be hesitant about doing a catheter ablation in Jon’s case.

I used to list coffee as a trigger for A-Fib, and it certainly was for Jon. But recent research indicates coffee may be a preventative of A-Fib. See A-Fib Triggers in Causes of Atrial Fibrillation.

Important research on the genetics of A-Fib: A-Fib can be genetic, and certainly seems to be in Jon and his parents’ case. If you and some of your relatives have A-Fib, get in touch with Dr. Patrick Ellinor at Massachusetts General. He and other doctors around the country are conducting important research on the genetics of A-Fib. If you become part of their study, you will be participating in cutting edge research at no or little cost to you. (Maybe most A-Fib is indeed genetic?)

We’re most grateful to Jon for his frank discussion of how A-Fib affected him—the ‘Heart-Brain connection’, emotional stress, the guilt one tends to feel when one gets A-Fib. Many heart problems can be partially one’s own fault, but usually not A-Fib. Many basketball players get A-Fib, like Bill Bradley, Larry Bird, Jerry West, and Hakeem Olajuwon for example. We don’t really know why. It may have something to do with height, genetics, or the physical stresses basketball puts on the pulmonary veins where most A-Fib comes from. In Jon’s case, genetics certainly played a part, since both Jon’s parents developed A-Fib.

It’s important to not blame ourselves for developing A-Fib. Consider A-Fib an act of God, or Fate, or Karma, or the luck of the draw. We shouldn’t get down on ourselves because we develop A-Fib. As Jon’s doctor told him, “This isn’t your fault!”

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