Living, riding (and sometimes racing) with Exercise-Induced Arrhythmogenic Right Ventricular Cardiomyopathy
Friday, June 20, 2008
Coffee Break
The Heart Beans coffee grinder allegedly grinds coffee to the rhythm of your heart.
The waiting room in the electrophysiology lab at the University of Pennsylvania Hospital is spartan, containing around two dozen double-wide side-chairs (which, to the un-Americanly proportioned, are practically loveseats), a TV tuned to whatever channel carries “Who Wants To Be A Millionaire?”, and a Bunn commercial-grade coffee-maker. This last item is like having an open bar at an Alcoholic’s Anonymous meeting. Above the coffee maker a sign reads “Coffee for family and guests of patients ONLY. If you drink coffee before your EP procedure your procedure will be CANCELLED.”
Fortunately, in my three extended visits to the electrophysiology lab, I spent very little time in the waiting room. It reeks of coffee, a substance verboten to most electrophysiology patients, who are usually putting down pills to slow the heart down.
I, however, continue to imbibe the stuff. I’ve calmed somewhat from the days when I used to boast “sugar and caffeine have made me the man I am”. This, I suppose, is no longer a boast but a warning. Among the bad behaviors I used to practice: doing entire training rides (often of 3 to 4 hours) with only a couple cups of coffee in my system; eating (many) chocolate-covered espresso beans in a race; going to 4 or 5pm in the afternoon on no food, just coffee. I'd like to say I've pulled lots of all-nighters in the architecture studio "grace à café" but when you drink as much as I did by the time the sun goes down coffee has no affect.
I now concoct a blend every morning of ¾ decaf Sumatra and ¼ the genuine article. And I drink 2 cups instead of a gazillion. It works out. My arrhythmia is only somewhat affected by caffeine, and I've been given no specific orders to cease and disist, just a general admonishment to keep an eye on my intake. Thus far I’ve sworn off the juice after each procedure then climbed back on the wagon after my heart settles down from all the poking and prodding in the EP lab, usually in a week or two. In theory I should be in the clear after my final ablation next week. But, in the spirit of Mr. B. Franklin I will aim to be a moderated man.
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.
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