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.

Monday, August 25, 2008

Who Knows What Secrets Lurk in the Hearts of Men? The ICD Knows...

Five weeks after my ablation and ICD implant, and four days after what I thought was a night of V-Tach runs, I trucked down to Philadelphia to get the secrets of my heart read by a woman with a large computer. My Medtronic Concerto ICD in addition to its life-saving functions, gathers certain data about my heart function. Specifically it monitors, EKG-style, dangerous arrhythmias of a speed above a pre-set limit, it notes any prolonged but less dangerous arrhythmias, and it records the heart’s overall bpm trends: how much time as a percentage of the given period did I spend at X, Y, and Z heart rates. It also tells what percentage of total beats are PVCs.

I was surprised to find out that, since my implant, I had no record-worthy V-tach, and only 1% of my total heartbeats were PVCs. This was a relief, but also disconcerting. I had been having, with seemingly descending frequency, what I thought were crazy bouts of PVCs since my surgery, and the occasional V-Tach.

The latter number, 1% of total beats being PVCs, is actually larger than it sounds. If an average person has 60 beats a minute x 60 minutes x 24 hrs, that equals 86400 beats per day, 1% of which is 864 errant beats a day. If those 864 beats come in bouts of, say, 20 beats a minute (a pretty noticeable amount of PVCs) then that is a 40 minute stretch of PVCs. Add to that equation the fact that I had some days where I had almost no PVCs and other days where I had many, and my “bouts” weren’t complete fabrications.

Well, all that made me feel a bit better about my recovery from surgery, but also convinced me that I was being hypersensitive, and should try to ignore the PVCs and get on with life. Dr. Marchlinski’s assistant said as much, recommending I start exercising again. Exercise, she thought might aid in recovery at this point, and reduce the number of PVCs.

Things were looking up for a few weeks. The day after the ICD “interrogation” I went for a two-mile run. I was advised to keep my heart rate from getting too high and I set a 135bpm speed limit for myself. Higher than last time, because we fancied me fixed and almost ready for prime time.

That weekend I went for my first bike ride, 14 miles in Central Park, at a very pedestrian pace. By the following weekend I had ridden 3 more times, each a 100% improvement, each faster, and farther. The next weekend I went out for a 3hr ride with my girlfriend Molly, who was gentle on me, although there was no question of me keeping up on the hills or if she decided to scoot. At 135bpm my out-of-shape body could manage a pretty paltry speed.

Riding with an ICD took some getting used to. First, I still didn’t trust the thing, and any weird sensation from my chest had me in a panic. Gradually I came to grips with the fact that the thing wasn’t going to go off accidentally if I rode over some washboard surface and sent pseudo-V-Tach vibrations up my arms. Then there was the worry that I might have some stupid accident that would wrench the thing from its tenuous lodging in my chest. All these fears dissipated over time, as did the feeling of heaviness and soreness in the pectoral zone.

What didn’t go away, however, were the PVCs. When I rode I’d always have at least a few that were quite strong and would make me pause for a moment. Often I’d feel unduly light-headed, but I chose to ignore that, chalking it up to being out of shape, riding in the August heat, and the fact that I was still not completely recovered and didn’t have all of my heart function.

The next, and hopefully final step in confirming my complete return to normal and victory over the giant scar on my heart, would be a final test, known as a “NIPS” test. NIPS stands for Non-Invasive Programmed Stimulation. Using a combination of the ICD and drugs the heart is stimulated to try to induce V-Tach. This is basically a final test of the success of the ablations. If V-Tach is induced, it means either more ablation, or more drugs, or both. If there is no V-Tach, then life is good again.
In the two weeks before the NIPS I exercised as much as I could, hoping that the return of fitness would help me ace this new test. In the final week I was told to stop taking my beta-blockers in order to have a pure, unadulterated heart. That’s when it all went pear-shaped...


Runner said...

Craig, I have been reading your posts with great interest. I am a 48 year old ex-runner, who was diagnosed with vtach this past April. I have been through many of the same things you have described, and I know how scary, painful, and frustrating this can be. I think it would be great to compare notes. Let me know. thanks

IronJenny said...

I just googled the blogs and found your site. I am an endurance athlete (marathon, triathlon, x/c skiing, etc). It seems that more and more endurance athletes are "coming down" with this. What gives?? I've just celebrated my one year anniversary of this sudden onslaught of PAC, VT, SVT, AFIB, and Bradycardia. Remarkably, it has not *quite* driven me crazy yet, even though the bed actually shakes when I lay down to sleep.
I'm 46, and still "race", although slower. I've had ablation, but doc could not burn off the "spot about the size of a quarter" off the back wall of my heart.
I was pretty much told, "Gee, we have a lot of really sick people to took at, Jenny. Why don't you stop back in after your next Ironman."
I'd love to hear more about what's going on with you.
Jenny Moore

Daniel P. Johnston said...

Geez Craig. I'm so sorry that this doesn't seem to be getting much easier for you. On a lighter note, the title for this post is just awesome. Walter Gibson would be proud.

Troubled said...

Hi Craig, I have been anxiously awaiting an update! I hope all is well and wanted to let you know that I love your writing, honesty and detailed info. Thanks!