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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.


Thursday, May 29, 2008

Viatcheslav vs. Chicken Little


NOT Viatcheslav...myself, heart intact, circa 2005...photo: ©Marco Quesada (velocitynation.com)

If there is a paramount of self-sacrifice in the name of sport I am not it. Countless cyclists have trained harder, longer, faster for more years and to more effect than I could ever boast. So why am I saddled with what appears to be the cardiovascular equivalent of a repetitive motion injury?

Dr. Francis Marchlinski has a few ideas. After my surprise introduction to the defibrillator last week, Marchlinski gave me an extra-long bedside consult. In a nutshell: For some cases a cocktail of conditions seem to brew the perfect cardiac storm. First is a genetic predisposition. I have not yet been tested for this anomaly myself, but research currently being done in Italy has linked a certain gene with a predisposition to cardiac scarring. Second is a reason for scarring. Among things that lead to scarring of the heart are viruses and bacterial infections. If one has the genetic predisposition one can end up with scarred heart tissue from a simple influenza virus. Third is the stress an endurance athlete puts on his or her system. Taken as a totality -genetic anomaly, exposure to disease, year-in-and-out physical stress- one MIGHT (and I cannot overly stress the MIGHT) develop an acquired arrhythmia.

Some media outlets have taken this to Chicken Little extremes. A widely disseminated article by Agence France Presse (here carried on the Discovery Channel of all places) almost seems to be telling us to retreat to our couches and TV sets, or else... "Most athletes pay a physical price for their love of the sport, but the ones who engage in endurance sports may be pushing their bodies to the brink of heart failure, according to a new study", we are told. This is alarmist. A more balanced, if a bit technical, consideration of the infamous Heidbuchel study is here.

So who needs to worry? If acquired arrhythmias were solely a function of elite cycling performance then I certainly would rule myself out. I'm not your typical recreational cyclist, but I am not a Viacheslav "Nails" Ekimov - who belted out 400+ mile weeks 52 weeks a year from his debut in the Soviet sports system at age 15 to his retirement from Team Discovery Channel at age 40. I did spend probably too many years trying to "make a go of it" for my level of talent, six years as a New York City messenger, four years of full-time racing, eight years in France, all told it probably amounts to something in excess of 100k miles, but I couldn't be sure. What I am sure of is that I was never particularly smart or cautious about riding while sick or injured. I was a foolish follower of the "Euro-tough" mentality so many competitive cyclists consider nescessary for success. I've ridden through colds and landed myself with bronchitis on several occasions. Is that what set me up for my V-tach? Again, nothing is clear. But knowing what I know now I would certainly encourage everyone to STOP RIDING while sick or over-tired.

Other things: It is certainly worthwhile being alert to any feeling of palpitations or missed beats. There are plenty of opportunities to rule out the possibility of having a dangerous arrhythmia, so by all means take them. It starts with a basic EKG, and for 99% of the population it stops there. Plenty of people have perfectly benign arrhythmias. If you have any doubts, make sure yours is one.

Finally: Be alert to "sycope" (pronounced sin-cope-ee). This is the phenomenon of fainting or nearly fainting. The combination of syncope and palpitations may indicate something more serious. I attributed some rare moments of passing out and frequent near-pass-outs to the low blood pressure that comes with being fit, but it turns out that these were clues to my larger problem.

I would never tell someone not to ride or race for fear of getting what I got. The sport is good, the sport is healthy, enjoy it to its fullest and, for chrissakes, "ne paniquez pas!"

7 comments:

Liam said...

Craig,

stopping by to let you know i'm reading this blog - so keep posting!

liam

Jill said...

Hi,

Glad I ran across this from a link on the NYT website...
Had a strange experience last week while on a run. Though it was hot and long, I was wearing a camelback. Sudden adrenaline rush, panicky feeling, heart beating fast. My usual is 48 bpm, 97/65 blood pressure, longtime distance runnner. EKG was fine but am seeing a cardiologist next week. Runs since have been good, but i have a tough race this weekend. In any case, it's good to know you're feeling better and that you're posting about your experiences. Thanks for that!
Jill in Boulder

Mark said...

I ran across this block from a mountain biking forum. I'm finding it very interesting. Please keep writing.

I hopefully things all work out for.

Mark said...

you.

Adrienne said...

Craig

keep us posted on when the next procedure is going to be and anything else -- the whole dam fam is rootin for you!

Love, Adrienne

Daniel P. Johnston said...

Craig,

Your recent experiences are beyond words (and yet transcribed so eloquently). I'm sure you'll ride again (and I hope I'm there for it). Even if you never touched a bike again, you've already made a deep, multi-faceted impression on the world of cycling that most racers can only envy and most professional motivators only speak of. But what is truly inspiring is that the C2 legacy is writing itself on equal terms in other realms, too. Category 1 is impressive for a bike racer, but I can't wait to hear more about your progress as an "hors-categorie" human.

Anonymous said...

I read your postings with great interest. As a WI HS State XC Champion, Ball State athlete and continued runner/competitor I encountered an almost year long period of concern, frustration, and missed diagnoses. Finally after requesting a halter from my cardiologist I recorded 63,000 PVC's, 2200 runs of VT one lasting 2500 beats and a max heart rate of 261. Never passed out. Seven ablations later, an ICD at which point I bottomed out and woke up on a ventilator and then testing of the ICD. Three weeks later a VT storm, back in the hospital and finally administered Amiodarone. I am okay now with no additonal episodes. I am back running, very slowly much to the chagrin of everyone I know, mainly because I have been diagnosed with ARVD. A former BSU Max VO2 test EKG showed a T wave inversion back in 91. I just made 59 and am happy that the sport that has been my life didn't kill me. There is so much more and like you I wonder how I might help other athletes avoid this conundrum. Your comment about workout at any cost really hit home for me and I wonder if others need to think this process through better?

Gary Dexheimer
Garyd8949@Aol
C. 260-403-1967