welcome to the medical-industrial complex...
Greetings from the land of inconsiderate bloggers. The radio silence doesn't mean I died, in fact between now and my last post I've been completely fixed and too busy reveling in it. It may be temporary, it may be permanent, but for the moment my heart beats normally -so normally that three weeks after the miraculous third (3!) ablation I hefted myself atop my bicycle and started riding like I was 22-years-old and unemployed. That is to say, from November 4th (another miraculous day) to scant days ago, I rode or ran every day for six weeks straight, a minimum of 30 minutes on the feet or one hour on the wheels. That is how fixed I am.
Other amazing consequences of fixedness: I can drink coffee, red wine, or eat a large meal and copious chocolate without degenerating into mad PVCs. I can go up stairs without feeling like I just threw out my clutch, I can face a cranky final review jury (architecture school, remember) without massive deleterious RPMs. And, as of two weeks ago, I am doing all of this without any drugs. How did this happen? It wasn't easy. Here's a breakdown:
My last post detailed a cardiac freakout brought on by an ill-advised stoppage of my beta-blockers. There was a disastrous treadmill test, a day of intermittent VT and frantic reloading of beta blockers.
I went home the next day, heart calmed by the drugs. I returned a week later for another stress-test. All doped-up, I eeked through 15 minutes on the ERG barely putting my heart above 150. "He can make it to Christmas!" was the pronouncement. I went home again. Back on a much heavier beta dose I still continued to have bouts of PVCs, sometimes they were super strong and persistent, but generally I felt like I was back on track relative to where I was before my collapse. This happy state of affairs lasted about three weeks.
One fine Monday afternoon as I scurried about the architecture building preparing for a studio review, I went into V-Tach. No warning, no preamble, no reason. Totally unexpected. I didn’t believe it was real, I blamed myself: must be a nerves, pre-presentation panic. But the presentation was a minor thing; and here I was, after two ablations, an ICD implant, and months on beta-blockers, and I was more symptomatic than before.
I sat down, gave a couple coughs and vaso-vagaled my way out of the V-Tach. I gave my little presentation, felt much better, and decided that I maybe I was just over reacting to some PVC runs. But on my way home from school I went into V-Tach again. And for the first time in my life coughing wouldn’t clear it. I got home, put my heart rate monitor on but it wouldn’t read. I wandered around in a panic for ten minutes before deciding I needed some medical attention. As a neighbor drove me to the school infirmary the V-tach stopped. Later I found out my ICD recorded 20 minutes of V Tach in the 150-180bpm zone.
At the infirmary my heart was bubbly with PVCs, but there was no evident V-Tach. It wasn’t clear what precisely had happened. I was sure I had been in VT for at least ten minutes, but it was my word against my now (reasonably) stable heart rhythm. Then I remembered the FedEx box moldering on my front porch.
A few weeks prior I received said box from Medtronic, the manufacturer of my ICD. It was a “Carelink”; basically a modem for my heart that reads my ICD and sends the data to my doctors. Receiving this new “peripheral” annoyed me. The user’s manual cover image shows the “Carelink” sharing bed-side table space with family photos, and a lamp only your grandmother would love. The target population for this device was forty years my senior. The whole thing seemed to imply that with my new ICD I was going to need constant monitoring for the rest of my life.
I instantly had a problem with this. First, I don’t like the idea of being involuntarily networked into the medical-industrial complex that I have unwittingly become dependant on. Not that my heart function is particularly privileged information, but I have no desire to become mentally dependant on this essentially nonessential device (the instruction book recommends you take it with you on your travels and tells you how to troubleshoot a hotel room phone line).
The other issue is that I have no land line, and the Carelink needs a land line. When I moved back to the US in 2004 I went completely cellular. Now there was no way I was going to drop 50-odd bucks a month for a land line so that Medtronic could keep tabs on me. I’m sure there are ICD recipients who need constant monitoring but I didn’t consider myself one.
But sitting there in the infirmary, trying to figure out what was going on, the Carelink seemed an excellent tool. My roommate came by with it later that night and we got it to blink and make some chirping sounds. I spent the night at the infirmary while my ICD data dropped into some virtual box at the University of Pennsylvania by which time it was the next morning and I was back into V-Tach.
Again, it started innocently enough. Sitting in my "Property of Princeton" jammies, munching a bagel at 9 am, I suddenly realized I was in V-Tach. I wandered over to the nursing station and announced my predicament and immediately had the entire Princeton University Health Services staff in a panic. Gurneys and EKG's were rolled in, IVs administered, and ambulances called as my heart thumped away. This time it got pretty bad. I never passed 200bpm but I was feeling pretty faint and the inability to at least break the V-Tach periodically with a cough was discouraging. After a half-hour in persistent V-Tach I was ambulanced over to the local emergency room where things calmed down. The day passed at the local hospital while arrangements were made to ship me to U Penn, an hours drive.
That night, pumped with yet more beta blockers I was back in the U Penn CCU. This is when it all began to feel like Groundhog Day ( a trope in my life of recent). Again, I was back in the hospital for an unplanned stay. Again, the only reasonable thing to do was increase my beta dose. But the larger question: why was my condition degrading so persistently from week to week?
My electrophysiologist Frank Marchlinski stuck by his original assessment of my situation. My heart was healing from the previous ablation in a way that turned my errant circuits back on. And this time they were more persistent, but slower and less lethal.
Clearly I was not making it to Christmas. A repeat ablation was scheduled for the following tuesday. Loaded with enough beta blocker to knock out an elephant, I was sent home for the weekend to rest up for the third attack on my blown heart.
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.