Welcome

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, June 29, 2009

"Guinea Pig C"

Check it out...I'm (kind of) mixing it up in the final sprint! Never thought I'd come this far so fast (Follow the arrow...that's my white shoulder and yellow tire, about 10 places back from the winner Lisbon Quintero). Photo: Alvin Poblacion, nyvelocity.com



Lately I've been doing a lot of research on R. Buckminster Fuller, the inventor /designer perhaps best known for his geodesic domes. Fuller was a visionary and an eccentric of a bygone era who sometimes called himself "Guinea Pig B", a reference to his decision to consider his life a constant experiment. Well, this weekend, I put on my Buckminster Fuller hat and checked into my own personal experiment: bike racing with a heavily ablated heart and an Internal Cardioverter-Defibrillator.

Depending on one’s approach the fact of me bike racing again could be considered remarkable or dangerous. At my last follow-up my doctor gave me the go-ahead to compete, but a good many doctors would not. My defibrillator alone is reason enough, the fact that my heart condition is terra incognita is another reason to stay away from racing. The official recommendation of activities for patients with ICDs is as follows (from EP LabDigest.com):

“The Bethesda Guidelines1 on sports participation consider that the risk to compete athletically with an ICD is unacceptably high. The guidelines indicate that individuals with an ICD should not be involved in sports more active than bowling and golf (even though these also have not been shown to be safe either) regardless of the underlying heart disease.”

Clearly this is conservative; these are blanket guidelines, they cannot not take into consideration each individual’s situation. My condition since my last ablation has been utterly stable, and my progress as far as fitness is concerned, counter-indicates any likely negative consequences. There is always the possibility of a run of V-tach coming out of nowhere, but in all my training that has not yet happened. If it did I would surely reconsider. But even then, I tend to be self-cardiovertable. My ICD is set to shock me at 222bpm, a rate I have not seen since last spring, in between ablations. The non-sustained V-tach I’ve experienced since then has only rarely gone above 200bpm. So the likelihood of being shocked while racing is very small.

The other big concern is crashing and damaging my ICD or “pulling out” a lead. This is where things get dicey. Crashing in bike racing is unavoidable. I’ve had very bad wrecks that have landed me in the hospital on multiple occasions. The most common bike related injury is a broken collarbone, and the ICD sits just below the collarbone.

Despite 20+ years of competition, and dozens of crashes, I’ve never broken a collarbone, or any bone. This does not mean it can’t happen at the next race, but I like to think that it is more than just luck that has kept me out of trouble. If I continue to race (the jury is still out) I will pick my events judiciously, avoiding known “crash-fests”, and race only in high category events or master’s races where, we like to imagine, age trumps foolhardiness.

Of course, from the perspective of crashing, the whole enterprise is foolhardy, so I’ve concocted an ICD protector (see previous post). I’m also in the market for a non-homemade pad, so if anyone has any ideas, let me know (I imagine there must be something designed for marksmen, for gun recoil?)

"So," you ask..."how did the race go...?" Stay tuned...

6 comments:

pilou said...

Craig- This is great. I am inspired... I just re-read the whole blog. You are tough, and you can write. Best of luck in all your projects,

Thierry

c2 said...

Thanks Thierry! Good luck with your ARVD battles. Think positive thoughts for negative test results!

Gerald Weiss said...

Hi,

I was diagnosed two years ago with HCM (hypotrophic cardiomyopathy) and had an ICD installed as a precautionary measure (never had any episodes). I also happen to be a black belt and working towards that had some fairly rigorous workouts (however, nothing like competitive cycling, I'm sure).

My cardiologist and EP both gave me clearance to basically do whatever I wanted (within reason-- the cardiologist told me to 'be true to myself' with regard to overdoing it). I'm set at 200 (and you're 220 threshold impresses the hell out of me-- I'm almost jealous :) ).

Was toying with sparring and found a recoil shirt (just like you postulated) at http://www.allsportsarmour.com/SHOOTING_ARMOUR_SHIRT_p/asa200.htm
-- haven't bought it yet, because I'm only going to once I've mentally committed to fighting again, and I haven't made that decision yet (at black belt, my system moves into the soft, internal arts).

There was also a women on the HCM forums who said she was patenting a protector as well -- customized for ICD wearers participating in competitive sports. When I read her post, she claimed to be weeks away from setting up the web site (that was about a year ago). No other info though.

Anyway, good luck with this -- and if you buy something, let me know how it works. I've got several buddies who are just aching to bang away at me again.

-- Gerald

c2 said...

Hi Gerald,
Thanks for your post, and the link. That shirt is exactly what I'm looking for! Unfortunately my competitive athletic adventures are somewhat on hold until I finish this last year of architecture school, just a few hours of riding/running here and there.
Good luck and thanks!
cc

Sally said...

Hi all - just reading this blog for my husband, as he is contemplating switching his ICD from subdermal to subpectoral. He had sudden cardiac arrest (V-tach) just 4 months ago. He's 46, a crazy cross-fit trainer, a 2nd-degree black-belt in shotokan and was heavily involved with Brazilian jiujitsu 5 days a week when this happened (at the dojo). The guys at the gym gave him CPR for 7 minutes before the paramedics defibrillated him back.

So background over - he was devastated by this event. However, within one month, he went back to jujitsu. He found a great shirt called evo-shield, I think it was at Cabelas website, which is exactly as described - a gun-recoil shirt with a pocket and an insert that covers the defib. He has been heavily rolling at the gym ever since, as well as lifting and training.

Question - do any of you have any thoughts as to discomfort from subpectoral implantation - i.e., do you feel restricted at all with stretching, pull-ups, etc?

Any feedback would be great. Thanks, Sally

c2 said...

Hi Sally,
Glad to hear your husband is back on his feet. I am a total fan of my subpectoral implant. Apart from the slightly longer recovery time I have had no issues at all. It feels well protected and it has not been in the way of any activities. I used to rock climb and, although I haven't resumed that, I feel like I could be comfortable doing it. After 1.5 years with the sub-pec I can confidently say it is the way to go for an athletic type.
Best of luck to you and your husband,
Craig