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.
Tuesday, April 8, 2008
Going backward to go forward. March 1 2008, and I'm standing on the starting line at the Rutgers University season opener for the Eastern Collegiate Cycling Conference. I am in the waning weeks of my thirty-eighth year and just having a number pinned on is an indulgence. I'm a graduate student at the Princeton University School of Architecture; I've spent the bulk of adulthood's first two decades as a slacker itinerant bike racer in Europe and the United States, and I really should be in studio building models.
Four years ago I ostensibly gave up the bike to resume my education and "get a real job", but I stayed in touch with the sport. I coached a team of young riders, using that as an excuse to ride myself. And I occasionally moonlight as a journalist, using that as an excuse for staying a sports fan. And from time to time I sneak some racing when no one is looking. Now, in the Collegiate Conference I race with guys who were busy being born the same year I was busy dropping out of college.
What I know now is that the Rutgers weekend will probably go down as my last bike race ever. As I struggled to keep up in a field that I would have easily been competitive in just a year before, I had no idea that I was flirting with something akin to death. I finished the race weekend inordinately fatigued, and in the following days post-race recuperation was proving hard to come by. My pulse, low and occasionally irregular -as is common with endurance athletes- was all over the map. I sat in a lecture feeling as if my heart was doing pirouettes in my chest. I went down to university health services. They put me on an EKG post-haste. I was having what is known as Premature Ventricular Contractions (PVC)s, a common phenomenon that many people experience. The trouble was that mine were wierd looking, came in extended runs, and had been going on for some time. I was sent to a cardiologist that same day. He was intrigued but not concerned. An echocardiogram gave no further clues. My heart was structurally solid, "an athletes heart" I was told. I expected nothing less.
I was given a Holter monitor to wear for 24hrs. This is a continuous EKG that records all your hearts activities. I was advised to do everything I normally do. So that day I went out for a two hour ride. I hit some of the local hills, making sure I got up into the levels of exertion I would normally reach in a race. I felt odd, like I was bottoming out on the hills, but I seemed to recover normally from the efforts. The next few days I was too busy to ride, which was fortunate because I was feeling better and beginning to think that the whole heart arrhythmia thing was silly. Then I got the call. Stop what you are doing, and go see a certain Dr. Francis Marchlinski at the University of Pennsylvania. My Holter monitor readout was grim.
Dr Marchlinski is a guru in the world of cardiac arrhythmia. Much in demand, the only reason Marchlinski deigned to take my case was because it was interesting to him. At the time I didn't know this and was feeling pretty flippant about the whole thing. I had already missed two days of school, which is alot in the fast-paced curriculum of an architecture masters program. I took another day off and headed down to the University of Pennsylvania hospital. After another EKG and a 45-minute inquisition by an intern, Marchlinski himself appeared. Tall and rangy, he is a wizard-like man in his mid-50s. At once kindly and intense, he seems to get lost in his words as he stares off at some Mount Doom no one else can see. After a few minutes with him one is suprised by the lack of a beard, robe and staff. Marchlinski's assessment was this: I have a serious cardiac anomally that could kill me at any time. Ventricular tachycardia, V-tach. Mount Doom.
There are myriad forms of cardiac arrhythmias, some are dangerous some are not. Simply put, certain arrhythmias are caused by scar tissue that develops in the heart muscle that create electrical signals that override the heart's normal rhythm. The location of the sites is the determining factor in assessing the malignancy of the arrythmia. Ventricular Tachycardia is one of the most dangerous and unpredictable of arrhythmias. Because it originates in the chambers of the heart most critical for sending blood to brain and body V-tach can shut a body down and do irrepairable harm. When treated, there is never absolute certainty that V-tach won't come back.
I left Philidelphia perplexed, bemused and disbelieving. I've always known my heart was a bit wacky, but it was hard to imagine being as healthy and athletic as I was and being so close to a, um, terminal moment. I spent the next week doing research, calling medically inclined friends and relatives. Next... what I found.