Living, riding (and sometimes racing) with Exercise-Induced Arrhythmogenic Right Ventricular Cardiomyopathy
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!"
Thursday, May 22, 2008
Defibrillated!
Above is the latest physical manifestation of my condition: the welty burn mark of a defibrillator paddle on my right pectoral.
The backstory: Monday May 19th I was carted off to the cardiac cath lab at U Penn for a follow up electrophysiology study (EP) to determine if the first round of radio-frequency ablation had been a success. Briefly, an EP study is a standard cardiac catheter procedure, in my case the catheter is threaded into a vein through an entrypoint in my groin, it snakes up into the heart and from there it gathers information about the state of things.
For my condition the electrophysiologist "paces" the heart, trying to induce ventricular tachycardia, first with electricity, then with drugs, then with a combination of the two. The hope is that I am un-inducable and then I get to go home with a clean bill of health and start my life again -more or less. That did not happen.
First I produced unsustained V-tach, minor things lasting a few seconds. Next were a few longer runs of sustained V-tach, and finally a seemingly endless run. The last run I was in VT for about 30 seconds when Dr. Marchlinski starting fretting, and ordered the defibrillator prepped. First he waited a bit to see if I would come out of it on my own. As anyone who's watched a made-for-TV medical drama you know there is a specific order of commands before defibrillation. In my case the technician pulled the trigger on the wrong command. I suspect I got hit at the moment I was starting to come out of V-tach naturally. I've been in V-Tach a few times and never had to be defibrillated. Furthermore normally when they defibrilate a conscious person they hit you with sedation right before they defibrillate. My nurse was in the process of injecting my IV when I got shocked, so I felt the full voltage with zero medication. It was pretty bad, the equipment around me had not been pulled away so I was slammed into a monitoring unit about six inches above my head and chest. When it was over the first thing I asked was if I still had all my teeth. I can't say its like anything I've ever felt. Apparently the technician was new, when it was over Marchlinski gave him a serious dressing-down.
So the upshot of this EP study: All the remaining origin sites of the VT were on the outside of the heart, so no ablation was done. Dr. Marchlinski wants to go in from the outside, performing an epicardial ablation, a proceedure that has only been done since 2000. It requires going in under the sternum, and is a full day of surgery with full anesthesia. Dr. Marchlinski is confident about the location of the site, it is far away from areas of the heart that might be damaged by epicardial ablation, and he thinks it will be successful. He claims a 100% success rate for all epicardial ablations he himself has performed (the national average I looked up is 84%)
After that he is definitely recommending the ICD, as with all V-tach patients there is no guarantee that there won't be a relapse. One thing we learned with the accidental defibrillation is that I won't go into the continuous loop of shock-V-tach-shock that Dr Marchlinski was worried about before.
So my return visit is now scheduled for the week of the 2nd of June. With both the surgery and ICD it will be 4 to 5 days in the
hospital, and wil likely require more recovery than my past visits. The ICD limits activity for the 6 weeks post-implantation in
order to allow the leads to "bed-in" to the heart.
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