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, September 23, 2008
World’s Toughest Fix
I am currently sitting in my home-away-from-home, the University of Pennsylvania hospital’s cardiac care unit, waiting to be released after another relapse of V-tach. There is a recurring add on the TV for a show called " World’s Toughest Fixes ". It’s a reality TV show where, I presume, some goatee'd neo-macho dude goes about fixing very large and/or complicated objects with a Leatherman. You can see where this is going, right? I am going to propose my heart for an episode of “World’s Toughest Fixes”.
When we last left our story.... I was about to go beta-blocker cold turkey. Operating under the assumption that my epicardial ablation had been a success, my electrophysiologist Dr. Frank Marchlinski ordered me off my meds starting one week before a final NIPS (Non-Invasive Programmed Stimulation) test, the test that determines if my V-tach has been eradicated. The beta-blocker I was on greatly reduce the chance of ventricular tachycardia, so in order to test whether my V-Tach had been cured I needed a heart clean of any chemical inhibitors.
After being off my beta-blocker for three days I started getting crazy palpitations - long periods where every other beat was a PVC. It was a Friday night and I was planning to do some long bike rides that weekend but the next morning the PVCs were so crazy I decided to stay put. I felt like I was having episodes of V-Tach but, after my last, clean ICD reading, I was doubting my self-diagnosing. Sunday I took the “what doesn’t kill you only makes you stronger” approach and went out on the bike for an hour and a half. I felt pretty bad but once my heart rate was up above 110 I no longer felt the PVCs. Later that week I learned, on a treadmill test, that my PVCs actually diminish when I’m exercising, although they never go away entirely.
Post-bike-ride the PVCs returned with a vengeance. I couldn’t concentrate and slept poorly. I held out and stayed off the beta-blocker until my Tuesday appointment at the University of Pennsylvania electrophysiology lab.
Tuesday’s first event was a treadmill stress test. On the treadmill it was immediately evident that everything I had been feeling was true. The PVC’s were massive, and there were runs of double and triple PVC’s, precursors to V-Tach. Then there was actual V-Tach. In the 12 minutes I lasted on the treadmill I went into V-Tach 6 times, but only for short periods, the longest run was 15 beats. By the last run I was up in the 150s and they shut the treadmill off. It was clear that my heart could easily be induced into V-Tach. It was clear that I was not fixed.
After the treadmill I was sent up the EP lab for the NIPS test. The NIPS test never happened. They were supposed to sedate me, and try to induce V-Tach with medication and pacing via my defibrillator. But by the time I got into a bed in the EP lab I was already in and out of V-Tach on a regular basis. I’d go into V-Tach for a few seconds, give a good hard cough (a V-Tach breaking technique I documented earlier) and then go right back into V-Tach. The episodes were slower than my pre-ablation V-Tach, mostly in the 140 to 180bpm zone. It was so persistent they kept a nurse by my side for over three hours while they figured out what to do with me. Clearly the NIPS test was redundant at this point.
I was given magnesium, and put back on my beta-blocker. From around noon to six I sat in a bed in the EP lab going in and out of V-Tach. Eventually I was sent up to a cardiac care unit for the night. On the CCU the VT persisted. The V-Tach was actually managable; under 180bpm I’m walking, talking and coherent. I found that if I moved around, coupled with my coughing I had some control over the V-Tach. This is counter-intuitive to most medical professionals who assume that V-Tach means immanent fainting, cardiac arrest and fun with defibrillators. My first hour on the CCU I had nurses running to my room every five minutes as my cardiac monitor alarms kept flashing “red alert”. It was reassuring to know that they were so on the ball, but in the end it was me who was reassuring them that I wasn’t about to die, and that I had some control of my V-Tach.
By 11 that night my V-Tach was fully under control and I was able to sleep. My beta-blocker dose was doubled and everything was under control by the following afternoon.
Dr. Marchlinski explained what he thought was the situation; the endocardial ablation back in April had been unsuccessful, as is generally the case with V-Tach, and the epicardial ablation I had at the end of June had not completely worked. It had seriously “wounded” the scar that was causing my V-Tach. Now my V-Tach was slower and less life threatening. But because it was slower it was also easier to trigger and harder to break. As the scar healed a circuit opened up which was again hi-jacking the normal “sinus” rhythm of my heart. And as the scar continued to heal the circuit was growing stronger.
With the V-Tach under control I was sent home on a double dose of beta-blocker, told to stay off exercise, and come back in a week for another stress test which would determine if I needed to be ablated right away or if I could wait. My school semester was about to start and I really wanted to do school right, no missed classes, no incompletes. I was eager to push any new ablation back as long as possible. My new goal: Make it to Christmas.