In March of 2008 I began treatment for a potentially fatal heart arrhythmia whose cause was unknown. I was fit and healthy, having spent a good part of my adult life as an elite cyclist, much of it racing in Europe.
After 5 years of fence-sitting on the part of my doctors, I have been given a diagnosis of ARVD/C (Arrhythmogenic Right Ventricular Dysplasia / Cardiomyopathy). I lack the known genetic markers for the disease as well as some of the structural changes that accompany ARVD/C, and my condition has shown no indication of being progressive (yet).
There is a growing population of current and former endurance athletes who end up with acquired arrhythmias, and a diagnosis of ARVD/C. But by placing these athletes in the ARVD/C patient population, we are potentially ignoring the very real likelihood of an acquired condition, similar, but different, from ARVD/C.
This blog is written as a resource for athletes with acquired arrhythmias, as well as anyone about to undergo endo or epi-cardial ablation, or the implantation of a ICD. It is also written to help generate some critical mass of interest in support of further research into acquired arrhythmias in endurance athletes and others. Feel free to contact me through the comments page if you have any questions or wish to make a written contribution to this blog.

Monday, April 14, 2008

Precedence and Prescience

Stive Vermaut, a victim of V-tach. photo ©: Daniel Schamps

Turns out that relative to the general population, there are an uncanny amount of endurance athletes with arrhrythmias, and dangerous right ventricular ones at that. A google search will bring you to myriad studies. Basically, I am almost a textbook case.

Among more well-known cyclists, there are two recent cases, one a happy ending, one not. Tour de France star Bobby Julich, whose particular arrhythmia was actually supraventricular, was cured with radio-frequency ablation. Bobby is now back at the top of his game. Stive Vermaut was not so lucky. Stive quit the sport after his first bouts of V-tach, was cleared to ride again, had another episode, quit for good, and died two years later of cardiac arrest. What isn't clear to me is this: what was the state of his treatment and why did he not get an implantable defibrillator (ICD).

Dr. Marchlinski gave me a three-pronged treatment strategy: radio-frequency ablation, an implantable defibrillator, and a lifetime on low levels of Beta-blockers. Initially it seemed heavy-handed. The only data he had to go on was my copious PVC's and a suspicious series of short runs of ventricular tachycardia during the ride I did with the Holter monitor. There was my previous history of fainting (two times) in odd circumstances, but that ws years ago, and to my mind it didn't all add up.
Nor did it add up to Dr. Larry Chinitz, my second opinion. He was suprised at Marchlinski's aggressive approach and thought further testing should be done. I submited to a cardiac MRI, and another echocardiogram.

Neither test proved any more, or less, conclusive. My mother -a licensed nurse who runs a floor at NYU medical center - was perhaps the most doubtful of all my "consultants". I decided to approach Dr. Marchlinski's treatment one step at a time. I had stopped all exercise, started on the betablockers, and waited for my next test - a treadmill stress test that, I was certain, would clear the air. Despite having been "out of training" for almost a month I was confident in my athleticism, and certain I would ace their little treadmill test.

Somewhere in the back and forth between NYU and the University of Pennsylvania, Dr. Chinitz and Dr. Marchlinski's opinions converged. I still don't know what did it, but Chinitz let me know that he was now in the Marchlinski camp of aggressive action. I shrugged my shoulders and booked my flight.

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