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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.


Sunday, August 18, 2013

Attack of the Unknown Bugs


Happiness is a quiet heart. From my last update at the close of 2011, to October 2012 things were entirely quiet. The rare PVC and rarer 2 or 3 seconds non-sustained ventricular tachycardia was about all the noise it could muster. Over this period I rode 5000 odd miles, did a trek in Nepal, and generally lived as actively as ever. Then some strangeness occurred. Probably I should have dusted off the old blog and given you the blow-by-blow, but I didn’t, so here’s the summary.
Early October, 2012, I get really sick one Friday night. Fever, chills, aches, but the worst of it is chest pain. The chest pain comes in waves, and subsides a bit if I lie flat. The fever is highish, 102 or so. By late Saturday I head to the emergency room. Unfortunately I choose a hospital by virtue of its reputation for having a quiet emergency room, not by its reputation as a hospital. After getting my vitals and the Reader’s Digest version of my health history they do an echocardiogram and blood work. The echo shows a depressed ejection fraction, 45% if I recall. The blood work shows elevated levels of troponin,  an enzyme that indicates the heart is not happy. The ER doc suggests I am suffering from myocarditis or periocarditis. I am admitted for observation.
Myocarditis is an inflammation of the heart, usually brought on by a bacterial or viral infection, periocarditis is an inflammation of the sac that lines the heart. Both would be responsible for the acute chest pain I was having, the fever, etc. 
My fever persists, antibiotics are tried. Further tests show that I do not have any known influenza, and the antibiotics are not working, so a bacterial infection seems unlikely. Unfortunately the hospital has no cardiologist on call on the day I am admitted, and the next day an ancient man who calls himself a cardiologist is assigned to my case and immediately asks me why I am not on ACE inhibitors, and beta-blockers, given my history. This sends up immediate alarms in my mind. I have been successfully steering clear of drugs since after my ultimately successful ablations in 2008. By Monday morning, with the chest pain gone and  the fever subsiding, and none of the three doctors who came to see me (cardiologist, internist, infectious disease specialist) is able to tell me what is wrong apart from some notion that I should be better medicated. I insist on discharge.
I schedule a visit with my trusted EP at U Penn, Dr. Marchlinski, for the following week. Seven days after the initial sickness my troponin levels are normal again, and my EF is up to 50%. Marchlinski cannot say with certainty what it was, but suspects a non-influenza virus that decided to snack on my heart. In fact, this suggests what we have suspected all along, that my heart is unusually susceptable to attack, and that something like this may be responsible for the original scarring that caused my condition. He wants me to do no exercise until I am completely recovered, and to come back eventually for an MRI and a PET scan to determine if there is any new scarring. 
It takes me over six weeks to recover fully. The second week out the fever returned, along with an incessant cough. I miss two weeks of work, visit local GP  who can't shed any light on my situation either and doesn't want to start up antibiotics again. Finally by the second week November I'm starting to feel well enough to do a little exercise, though the cough doesn't abate until Christmas. 
Out of the woods finally, I start to think about scheduling that PET scan and MRI... 

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