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.


Tuesday, August 20, 2013

Grim Reaper Euro-Ambulance

Sooo...did I mention I'm not the most diligent patient? After my run in with the Unknown Bugs I was thoroughly chastised by my heart doc Frank Marchlinski, various members of his support staff, my mother, and my Person (Molly), for not having seen a doctor or sent in my ICD data for the better part of two years. I was healthy, what can I say?
But I vowed to be more On The Ball; and that meant taking Marchlinski up on his offer of a repeat MRI and PET scan. The MRI was to judge the condition of my heart 5 years after my initial treatment, the PET scan was to determine if there were any immediate effects from the suspected myocarditis.
Now, those of you with an ICD might be saying to yourselves "but, I was told you can't do an MRI with an ICD..." And you would be sort of right. As it was explained to me, very few hospitals will do an MRI on a patient with an ICD, but in fact it can be done. U Penn is one. Specially trained technicians are brought in, the machine is recalibrated, an electrophysiologist and ICD specialist stays in the lab to monitor things, and it takes forever.
But by the time I was fully recovered from my sickness I had better things to do than truck up to Philadelphia and become the filling in various high tech donuts for the better part of a day. Or so I thought. 2012 became 2013 and I still hadn't made my appointment.
It was some time in January that Molly and I found ourselves woken every morning at a quarter of seven by our neighbor's alarm clock. This was not particularly notable, apart from the fact that it sounded like a distant Euro-style ambulance (eee-naa!...eee-naa!), and it seemed to be a reminder of immanent doom. As if all my years of damaging myself in the bike racing battlefields of France had come to this. If I didn't make the damn call and get the MRI, the grim reaper was closing in behind the wheel of a bubble-topped red Mercedes "Sprinter" with "Secours!" written on the side. Over a month went by with this constant early morning reminder niggling me to make the bloody appointment. Then, thankfully, we moved.
Excitedly putting together our new home, I forgot about the MRI. Then, quite literally the morning after our move, the grim reaper Euro-ambulance woke us up again with its incessant "eeee-naaa." We looked at each other incredulously. What were the chances that our new neighbor in our new apartment had the same alarm clock as the neighbor in our old apartment? I pondered this in the shower a few mornings later, up earlier than usual, when the alarm went off again. Strangely it seemed just as far away as it did in bed, by which I mean, basically right next to me. It was then that I realized, the grim reaper Euro-ambulance was my goddamn defibrillator.
I had my ICD interrogated by a local EP. The battery was almost dead, and it had been for quite some time. I couldn't actually say when I first started hearing the alarm, but it was well over a month. I needed a new battery post-haste. This was very premature - ICDs are supposed to last at least 8 years, and mine was in its death throes at barely 5 years-old.
This was actually a relief to the crew at U Penn. I could get my MRI immediately before my ICD replacement surgery. This meant that if the ICD should get fried during the MRI it really didn't matter, I'd be wheeled upstairs for a new model directly. Knowing the grim reaper was empowering: I made my reservation, one day for the PET scan, one day for the MRI and ICD replacement.

Next episode: New battery...same heart..

No comments: