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, June 10, 2008

I Can't Drive 55...



...and I'm hard-pressed to obey my doctor-advised cardiac speed limit of 110 beats per minute. The trouble is I'm addicted to exercise, though that wording seems misleading. There is a quality of addiction, a seriousness of habit, that defies both the word habit and addiction.

In my late teens exertion became the default setting; I started working as a bike messenger and the bike became a limb. Days became a constant quest for forward motion. Weeks became catalogs of distance when I started racing, and months developed new monikers: "base", "power", "peak". The year ceased to be divided into four seasons, rather it took on the shape of a bell curve of training in my mind, the summer was a crest of miles, hours, races.

And it has been that way for over twenty years, through various life changes, career paths, homes, lovers and dogs. Returning to academia broke me of the habit of looking at the year as a bell curve, but the smaller scale habits stick. Before V-tach I would feel grim if I didn't get out on the bike at least twice a week. I still kept a jotted log of hours ridden. My body gives constant chemical feedback if it is being ignored.

My body has been ignored for three months two weeks and four days as of this writing. There are times when not being able to exercise is frustrating and depressing. A few of those times I chose to ignore the moratorium on exercise and did some things I probably shouldn't have. There were a handful of short, 20 minute jogs. It felt pretty good, I kept a steady eye on the heart rate monitor. Nothing happened, no V-tach. I never let the heart get much above 130bpm. The dog usually slowed me down before I could do myself damage. At eleven years-old she's got her own issues.

Then there was the one, illicit bike ride. It was a beautiful day, I was feeling fat and pasty. I figured I can walk, right? A bike can be ridden at a walking pace, no? Well, no. Not by me. I headed out on my 'cross bike on the C & O canal, a dirt path that parallels the Potomac as it heads into Washington DC. I was assured no one I knew would see me. It felt amazing. Suddenly I was flying along the loose dirt, hands on the tops, in my best De Vlaminick-at-Paris-Roubaix-1978 posture. The heart rate monitor read 140bpm. I managed to tone it down, but what was supposed to be a half-hour "just to test things out" turned into 2 hours. Again nothing happened, apart from the fact that I was pretty exhausted when I got home. Three months sedentary will kill a guy.

That night I shaved my legs for the first time since my diagnosis. Most men who race bicycles can't wait until they are done and can let the hair grow back. I'm the opposite. I've been shaving my legs since I was 16 and until my heart stopped working I didn't know what my legs looked like with hair. Okay, there were the periodic off-season month-long growth, but that never amounted to more than 1/2 an inch of stubble. Let me tell you, "au naturale" on these legs is hirsute. We are talking long, dark hairs. Who knew.

Anyway, the hair came off and I decided that my ride was such a success I was going to go back into secret low level training until my next ablation in two weeks. The next day I headed out on the bike again. Two things happened. The first was I could barely sit down. Three months off the bike and my first ride was two hours on an unpaved tow path, well, my ass was not ready for that. The second was an unprovoked run of V-tach four minutes into the ride. I was accelerating from a stop sign and the heart rate monitor went into the low 200's. I felt it, I stopped. It stopped. Total time was only 7 or 8 seconds, but it was enough to tell me I was doing the wrong thing. I turned around and went home.

And that is the extent of my physical adventures since my heart done did me wrong. Oh, there was a hike, astutely monitored by my girlfriend, who made me pause every few minutes and kept me hydrated. That's all, for three months two weeks and four days.

Update: Last week was meant to be my final, definitive, encounter with the ablator . Instead, the Friday before the Monday I was supposed to check in to the cardiac catheter lab at U Penn, I found myself violently ill with an unidentified gastro-intestinal infection. A week later it is still unclear what I came down with but whatever it was I was ill enough to be hospitalized overnight and put on intravenous fluids and a 24-hour heart monitor. I had a fever pushing 104F. When I emerged on the other side I had lost eight pounds in three days, and my surgery was cancelled.

Apart from the fact that it sucks to be so sick, it sucks even more to be so fragile that doctors will admit you to an ICU ward because of a stomache flu. At first I was pissed off to be there. I thought I might be able to recover in time to keep my surgery date, and being in the hospital was not helping. That night, though, I had a small run of V-tach. It was nothing life threatening, in fact I was asleep when it happened, but it was good to know someone was on it. I was woken up to nurses rushing in and attaching a bag of magnesium to my IV. Electrolytes, especially magnesium, are important to heart rhythm functionality, and the magnesium seemed to correct an imbalance. In fact, I probably should have been given it hours before, when I was first admitted.

Sunday turned into Monday and my date with Dr. Marchlinski was given to some other lucky chap and now I sit, recovered but not quite yet reconstituted, awaiting another re-schedule. The weather is hot and beautiful. It is my favorite time of year for racing bicycles.

4 comments:

Dave said...

I had no idea you had dark, thick hair on those legs! Ew...

Godfather said...

Craig,

What's going on? I heard about your v-tach and then read your blog.

You may recall I had atrial fibrillation. Actually it wasn't classic atrial fibrillation but the doctor said it was an upper chamber arrhythmia and not life threatening. I do recall my heart was going bonkers on our ride in Paris to Disney and back before I had it diagnosed.

I had the ablation at NYU in 2003 and have been off beta blockers since. You seem to have learned a lot more than I did about your condition. Your description of the EP and getting your heart revved up for 5 hours or so, is spot on. I remember going under anesthesia at about 7:00 AM and waking up at 2:00 PM. There was one moment when they were putting my heart through the paces to find the "excess neural pathway" and the orderly pushed me back down in a half-conscious stupor. My heart was pounding so heart that I woke up despite the anesthesia.

The 2003 EP/Ablation was the second attempt. The first attempt was around 1999 and was not successful. I was resigned to a lifetime of beta blockers.

They needed a minute to map the heart and trace the excessory pathway. In 2003 NYU improved their mapping techniques and they could map the entire heart's electrical system with one beat. But they had to keep revving the heart to trigger the arrhythmia. My cardiologist is Stuart Dickerman but he didn't do the surgery. I hardly met the team of doctors who fixed me. I keep meaning to send them something for Christmas, a small gesture of my gratitude, like Harry and David fruit, but I don't even remember their names. But goddamn they did a great job, almost entirely in anonymity.

I hope your U Penn doctor is ultimately successful in rooting out all the excessory pathways. I'm sure he will be.

Take care,

Rob Kotch
PS I tried your littlehorse email and I'm not sure if you use that anymore.

Mags said...

Craig,

You are amazing and so close to your end goals. Keep up the fight. I'm routing for you through my long weeks on a surgery rotation. Your story reminds me of why I'm doing this whole MD thing to myself. I'm sure you meant to inspire other patients (and keep us cyclists informed) but I know that your story has inspired the doctors around me.

Take care and keep writing,

Maggie

c2 said...

thanks for your note maggie, and good luck with your rotations and whatever racing you can squeeze into it all!
-cc