Racing with Hardware

A happy "ICD in competition story". The press tells us that this particular footballer had a "heart attack" but those of us with arrhythmias know this was probably just a virile run of V-tach. Thanks to Todd German for pointing out this link


Competing in a bike race with an implanted defibrillator was much less anxiety provoking than I imagined. But I was pretty nervous at the start line all the same. In races before my cardiac adventures I had become pretty blaisé about racing, I was immune to typical pre -race stomach butterflies. Twenty-odd years of racing will do that to you. Well, the butterflies are back. Starting a race was nerve wracking, and exciting. Not exciting enough to trigger any reggae heart rhythms though. My pulse was steady in the 70s as we were given the whistle.

The race was pretty much all out from the gun. The pack went nearly single file in the first mile and stayed that way for most of the first half of the race, averaging 28mph over the first 4 of 8 laps on the rolling six-mile Central Park circuit. Once I was warmed up this was perfect for me. My training has all been low threshold endurance and some controlled sub-max speed. Prior to the race I did zero training for sharp accelerations and zero efforts where I maintained a heart rate of more than 90% of threshold for more than 3 minutes at a time. The constant speed of the race eliminated the need to respond to sharp accelerations, but I sat above 90% for a long, long time, 22 minutes out of a 1hr45 minute race.

Which was precisely what I was looking for. Being forced to push myself at a steady race pace was eye-opening. Apart from the expected suffering my heart felt fine. By the second half of the race I was feeling pretty good. I was in no position to actually be a factor in the race, no attacking, or sticking my nose in the wind, but I was able to surf along just fine.

And that was pretty much how the race went: staying in the wheels, far enough towards the front to keep out of trouble. The pace calmed down for a few minutes here and there, but I never let my self get into a position where I needed to jump after an attack, I just let the pack swell around me and took my own sweet time circulating back to the front.

While cruising at 130bpm during one lull in the action I suddenly felt the tell-tale thumping of errant heart beats. My heart rate monitor went from 130 to 80 in about 5 seconds, then slowly regained speed to 130 again - over a 30 second span. I had never seen that before, usually my HRM spikes, rather than dips. I immediately put up my hand (the universal bike racer signal for a mechanical problem - usually flat tire) and drifted backwards coasting. But the thumping was over as suddenly as it came. I rode caboose for a minute or so and once I was sure that the anomaly was gone I accelerated back into the field.

After the weekend I "Carelinked" my ICD data to my doctor and was told that I had a five beat run of VT followed by several "salvos" of PVCs over the course of one minute at precisely that time of day. I was told not to worry, this was not a serious problem. Discussing the event we came to the conclusion that it might be a situation where my heart was responding to the new level of effort with some misbehavior that might die down once it gets habituated. I'm willing to buy that explanation, I've had similar experiences with previous up-ticks in training, but they were always confined to PVCs, not VT, however short.

Anyway, apart from that momentary scare, the rest of the race went smoothly. We came into the last lap and I wasn't sure what my strategy would be for dealing with the inevitable field sprint, the most dangerous part of most races. It is often better to stay in the top 20 in the lead up to a sprint, in order to avoid crashes as fatigued riders jockey for position. Either that or stay as far back as possible without risking getting dropped. I opted for the former, which can mean a constant fight to hold position in a frenetically circulating pack. But on this day everything was smooth, I sat in 10-20th position for the last 3 miles and when the final push to the line came I found the right wheels and ended up finishing 10th with no real sprint effort. In the sprint my heart rate did hit 171, the second high water mark of the race, but I never really pulled on the bars and gave it my all.

Apart from the minor mid-race heart weirdness it was a successful venture. The next day I was suitably exhausted but managed a 55 mile jaunt at a recovery pace. As the week progressed and I recovered, I felt a definite surge in PVCs. Riding seemed to be the thing that calmed them, and by midweek they were pretty much gone.

Next...to do or not to do?...race number two...

"Guinea Pig C"

Check it out...I'm (kind of) mixing it up in the final sprint! Never thought I'd come this far so fast (Follow the arrow...that's my white shoulder and yellow tire, about 10 places back from the winner Lisbon Quintero). Photo: Alvin Poblacion, nyvelocity.com



Lately I've been doing a lot of research on R. Buckminster Fuller, the inventor /designer perhaps best known for his geodesic domes. Fuller was a visionary and an eccentric of a bygone era who sometimes called himself "Guinea Pig B", a reference to his decision to consider his life a constant experiment. Well, this weekend, I put on my Buckminster Fuller hat and checked into my own personal experiment: bike racing with a heavily ablated heart and an Internal Cardioverter-Defibrillator.

Depending on one’s approach the fact of me bike racing again could be considered remarkable or dangerous. At my last follow-up my doctor gave me the go-ahead to compete, but a good many doctors would not. My defibrillator alone is reason enough, the fact that my heart condition is terra incognita is another reason to stay away from racing. The official recommendation of activities for patients with ICDs is as follows (from EP LabDigest.com):

“The Bethesda Guidelines1 on sports participation consider that the risk to compete athletically with an ICD is unacceptably high. The guidelines indicate that individuals with an ICD should not be involved in sports more active than bowling and golf (even though these also have not been shown to be safe either) regardless of the underlying heart disease.”

Clearly this is conservative; these are blanket guidelines, they cannot not take into consideration each individual’s situation. My condition since my last ablation has been utterly stable, and my progress as far as fitness is concerned, counter-indicates any likely negative consequences. There is always the possibility of a run of V-tach coming out of nowhere, but in all my training that has not yet happened. If it did I would surely reconsider. But even then, I tend to be self-cardiovertable. My ICD is set to shock me at 222bpm, a rate I have not seen since last spring, in between ablations. The non-sustained V-tach I’ve experienced since then has only rarely gone above 200bpm. So the likelihood of being shocked while racing is very small.

The other big concern is crashing and damaging my ICD or “pulling out” a lead. This is where things get dicey. Crashing in bike racing is unavoidable. I’ve had very bad wrecks that have landed me in the hospital on multiple occasions. The most common bike related injury is a broken collarbone, and the ICD sits just below the collarbone.

Despite 20+ years of competition, and dozens of crashes, I’ve never broken a collarbone, or any bone. This does not mean it can’t happen at the next race, but I like to think that it is more than just luck that has kept me out of trouble. If I continue to race (the jury is still out) I will pick my events judiciously, avoiding known “crash-fests”, and race only in high category events or master’s races where, we like to imagine, age trumps foolhardiness.

Of course, from the perspective of crashing, the whole enterprise is foolhardy, so I’ve concocted an ICD protector (see previous post). I’m also in the market for a non-homemade pad, so if anyone has any ideas, let me know (I imagine there must be something designed for marksmen, for gun recoil?)

"So," you ask..."how did the race go...?" Stay tuned...

Seriously, don't call it a comeback...

Back in the day when I could kick it...(photo copyright Marco Quesada, nyvelocity.com)


Apologies for the inconsiderate blogging. My last post was Saint Patrick's day, and the luck has been coming thick and fast since then, with not much time to process it all or any real interest in dwelling on my good fortune lest I lose it. First thing: As of mid-April I have been declared ARVD-free, leastways I don't have any of the currently identified genetic markers. As I detailed in other posts, this was the last hurdle to pass over in my return to health. To some doctors, the lack of genetic ARVD markers does not mean one is in the free and clear regarding exercise, but because of my athletic background and my continued improvement over the past months with regular moderately strenuous exercise, I have been given the OK to start a full training regime. And, providing I take precautions (see photo below) even with my ICD, Doctor Marchlinski says there is no clinical reason why I shouldn't race again.
Now, since this news, there have been many limiting factors to my return to competition. The greatest is, of course, that I have a life off the bike which is somewhat demanding. Architecture school greatly limits the time one can devote to extracurriculars. Then there is the question of motivation in a 40 year-old whose best years are surely behind him. The biggest motivation to race again is to prove to myself that I can get back to some semblance of what I was, minus some snap and speed. Lastly, I still have a fear of the "top end", operating at or above my threshold, and the sharp accelerations that one must endure in bike racing. Acceleration and max-threshold training are the two things I have not yet done since I started riding again. But let me give you something of a chronology...

My homemade ICD protection: an old chamois and an Ace bandage


January to March continued as I had detailed in prior posts (Extreme Cardiac Rehab), in which I did a light load of training 4 to 8 hours a week max, much of it running. In April, with the weather improving and more hours of daylight, I increased the load to 6 to 10 hours a week, phasing out the running mid-April and throwing in an occasional 3 hour ride. My body responded well, I would have occasional PVCs while training, but there would be days when I'd not notice a single errant beat. The cardiac "noise" -occassional discomfort- would come and go. I've since accepted these phenomenon as facts of life, they don't really bother me. Rarely I'll have a flurry of PVCs, particularly if I have to stop short from a sudden effort, but they are few and far between. I make a point of checking my pulse at my neck (the best place to detect PVCs) each time I have to come to a stop, say at a red light. It's an odd posture, having one's hand on one's throat at every light, but it's reassuring to know everything is smooth, and when it isn't I am more attentive and trim my efforts.
When I got my genetic testing back I released myself from the 165bpm limit I had set. From mid-April on I would let my heart get up into the high 160s low 170s, but only in a gradual, controlled manner, never in a rapid acceleration or sprint. And these efforts were rare, they'd happen organically, as on a hill, or on a rare instance when I felt like doing a cruise interval. Basically I stuck to whatever felt good and didn't push myself inordinately.
Now, for the past month or so, more and more feels better and better: more distance, more speed, more effort. And I am having a standard issue training response: my training data is exactly as it should be, I can do more and more with less and less. My weight has come down, my speed over certain test-circuits has gone steadily up. Everything is exactly as it should be for the amount of effort I have been putting in. My training has held steady at 8 to 12 hours a week since mid-May, a fraction of what I used to do, but I couldn't be happier for it.
I had a follow up visit with Dr. Marchlinski at the end of May. My ICD is set to record my heart at 166bpm, and sure enough, starting in April I had many moments of monitoring recorded on my device. It is reassuring to know that I can compare the data from my Garmin GPS/ heartrate monitor that records my training with my ICD data and see that both devices are spot on accurate. (actually the Garmin seems more sensitive to moment by moment changes, the ICD is looking for arrhythmias and all its getting is healthy sinus tachycardia, it doesn't differentiate between 166 and 168 bpm for example. I would like to know if it can print out rhythm strips of my heart when I am at that level of effort, if only to see how frequent the PVCs are. At anything above 150bpm a PVC is hard to discern unless it comes with friends.)
So that is the status as I prepare for my race debut this Saturday. It will be a club race in Central Park, the place I began racing and the territory I am most familiar with. I am nervous mainly because my riding to this point has been predominantly solo and having to respond to other peoples accelerations and the ebb and flow of a peloton will be new.
My two concessions to my condition will be: a) my homemade ICD protector (a chamois pulled out of an old torn pair of shorts (clean, I swear)) and b) a promise to myself to not get too distraught if it all proves to be too much.
I promise to keep this channel updated....

To "D" or not to "D"?

"Dysplasia": the cardiac wall of an ARVD victim...(if this disturbs you scroll down to the happy wombat).

Arrhythmogenic right ventricular dysplasia / cardiomyopathy (ARVD/C) has been discussed in passing on this blog before . The Wikipedia page is a decent, if a bit technical description of the disease, the Cleveland Clinic has a more accessible layman’s explanation, and Johns Hopkins ARVD Center has more detailed information including the complete clinical diagnosis guidelines. There is also an excellent information clearinghouse and support group at http://www.arvd-arvc-info.com/.

In brief ARVD/C is a form of cardiac disease in which the heart muscle of the right ventricle is replaced over time by fat and/or fibrous tissue. The reason why ARVD/C keeps popping its head up here is that I am, symptomatically, a likely case of ARVD/C. To an ARVD/C specialist my ECG reads suspiciously, and my experiences leading up to my year-long heart saga are textbook ARVD/C signs and portents.

The “D/C” tacked onto the “ARV” seems, in many ways, to be indicative of the nuance required in diagnosing this disease, though the actual reason for the "Dysplasia / Cardiomyopathy" dual moniker is one of semantics. From what I have been able to discern different people in different places use the term interchangably, with no differential in the diagnosis. Dysplasia refers to an abnormality in the way cells replace each other as a body ages. As a dog person I always think of dysplasia in the context of the hip dysplasia common to large breeds. Cardiomyopathy is a general term for any disease of the heart muscle. Unlike dysplasia, cardiomyopathy does not imply a progressive deterioration.

So the question that has lately loomed over my head, and might or might not be answered by the results of my forthcoming genetic testing is this: is my condition progressive (i.e. heavy on the “D”) and is my heart turning into a fatty fibrous lump, accelerated by the fact that I continue to exercise? Or is my condition stable over time, and I merely have to learn to live with my ICD and the off-chance that some of the already-existing ablated scar-tissue might come back “on-line” as a dangerous arrhythmia.

My electrophysiologist Dr. Marchlinski subscribes to the latter theory. He has been, and continues to be, hesitant to give me an ARVD/C diagnosis. Initially, after my first visit, ARVD/C was a likely diagnosis, and I was advised according to the protocol for this disease, which includes a total moratorium on any exercise more strenuous than walking. But as tests came in, including repeat echocardiograms an MRI, angiogram, and the more invasive electrophysiology test, Dr. Marchinski grew more positive about my likely outcome. After my first ablation he declared that, once my arrhythmias were under control and my ICD installed, there would be nothing I couldn’t do (baring contact sports that might rattle the ICD).

This flies in the face of the more conservative approach to a “possible” case of ARVD/C. Regardless of my testing “clean” of any fatty fibrous tissue replacement beyond the pre-existing scar, it seems that my continuously funky EKG and past history of fainting and V-Tach is enough to imply a potential for long term progression that should be heeded. The ARVD/C specialists, in other words, say I’m damaging myself by continuing to exercise.

So my task as it stands is to triangulate all this information and decide how much, if any, exercise is going to be appropriate for me. Because the current gamut of opinion coming from extremely competent practitioners runs from “don’t worry, do as much as you want” to “you are doing permanent damage to yourself if you don’t stop”, this is pretty heady stuff. It also makes it clear just how inexact a science / art medicine is.

Stress Test Success

(non sequitur wombat)


(Backwritten)
Extreme Cardiac Rehab began not-so-Extremely. Day One I plodded along on a half-hour “run” at a sad pace just shy of eleven-minutes-a-mile. Keeping the heart rate below 150 was not difficult, the ticker wouldn’t tick much above 140 without feeling over-done. I was still taking beta-blockers, and still feeling the odd PVC, especially while running. The PVCs at-effort were much calmer than PVCs prior to the ablation, they never felt like my heart was in my throat. But they were still present and somewhat disconcerting.

In less than a week, though, I was running at sub-ten-minutes and every day was an improvement. On the bike I confined myself to an hour out and back on the local canal towpath. The extra resistance of the dirt towpath kept the effort steady. Often, when bike riding, a graph of cardiac output resembles a mountain range, mainly because of variations in terrain and the constant slowing down and speeding up required while riding in traffic. Where running is smooth and steady, generally confined to a ten-beat differential, riding is up and down, it is easy to fall below 100bpm on downhills, as high as you care to go on uphills. On the flat, dirt towpath, I was able to keep the heart rate stable, aiming for 130-140bpm.

Over this six week period I ran 38 miles and rode 611 miles. I never had any V-Tach, and the PVCs seemed to diminish over time, though they never went away completely. Usually the first 20 minutes were the worst, but as I warmed up the PVCs disappeared. Once, on a rare weekend two-hour ride, my heart rate monitor flipped out and shot up to 180bpm briefly at a point when I was not doing more than 130bpm. That night I “carelinked” my ICD just to be sure that this anomaly was in fact a heart rate monitor malfunction. It was. The ICD picked up no V-tach, and no unusually high heart rate.

December 17th I was back in the basement stress-test lab of the University of Pennsylvania, wired to the EKG, belting out the treadmill. The test was 100% smooth. I had individual PVCs and the occasional couplet (two PVCs back to back) about once or twice every 120 to 150 beats. Which, while not perfect, was still a far improvement over my last test . I ran to 17 minutes, the last three minutes were between 170 and 175bpm. I wanted to reach a heart rate I knew I’d need to be at if ever I returned to competition, and 175 is about my threshold.

Looking back, and looking forward, it is unclear to me what, precisely, causes these PVCs. Even now, three months after the last ablation, I have them. “Clinically” they are inconsequential, meaning that unless they increase markedly I really shouldn’t worry about them. But it is interesting to me what they mean, and why they happen. I am overjoyed that I have almost zero PVCs unless I’m exercising. That is a giant improvement.

There is also a level of “pericardial noise” –for lack of a better term. By this I mean a sensation of weight, sometimes slight discomfort, in the chest. It’s never painful and has never made me stop what I’m doing, but it seems to be present when I exercise. I notice it in the beginning, by the end of a workout it’s usually gone.

The stress test was followed by a “Non-invasive Programmed Stimulation” Test (NIPS) during which I was knocked out, and run through the gears. The docs paced my heart up to high speed using my implanted defibrillator and injected adrenalin. The goal was to see whether I could be artificially induced into V-tach. I was uninducable.
Sent home with a clean bill of health, and no more prescriptions for drugs, I was given the “all clear” to exercise to my heart’s content. But there was one last, small, worry hanging over my head: genetic testing for ARVD / C.

Extreme Cardiac Rehab

After my ICD implant and second ablation someone (I don’t remember who) suggested that I sign up for “cardiac rehab”. I’m not all that familiar with cardiac rehab, and perhaps someone who is can tell me differently, but from a brief investigation I concluded that it involves mostly daintily pedaling a stationary bike, perhaps lifting some purse-sized weights, touching toes and the like. I felt that, despite what I’d been through, perhaps cardiac rehab might be a bit, um, basic.

My version of cardiac rehab began as soon as I could move my left arm over my head again, about six weeks after ICD surgery. Basic fitness returned pretty quickly. I got back on the bike and went from a barely catatonic 45 minute-ride to a sprightly three-hour jaunt in about two weeks. That lasted for a month or so until it all broke down again as my condition deteriorated into September. Finally, three weeks after my third ablation , with the heart beating like a Swiss watch (sort of), I resumed a right proper training regime: Extreme Cardiac Rehab.

For six weeks beginning the first week of November I ran or rode every day. My minimum run was half-an-hour, the minimum ride was one hour. Most days that was all my schedule would allow; occasionally -once I got some miles under my belt- I’d try for 2 to 3 hrs. The idea was to get my heart used to a light endurance load; nothing like what I used to do when I raced, just enough to spark a training effect and put these past months of neglect and deterioration (some would say care and recovery) behind me.

This was as much a mental exercise as a physical one, to prove to myself that I was fixed, and to gauge my “new” heart’s ability. In the darkest moments of the past months I felt as if I was never going to be able to do more than walk up a flight or two of stairs, and I should learn to be happy with just that. Now it seemed that I might have a whole heart again I wanted to use it as much as possible.

The other goal of the six-week Extreme Cardiac Rehab program was to get myself prepped for a return battery of testing, the one I failed so miserably last time . Approximately eight weeks after an ablation they call you back in to run the treadmill, and get knocked out and electro-stimulated – the dreaded NIPS test. I wanted to arrive at that day with “confidence in my heart.”

Endurance sports...the hidden killer??

and cigarettes are good for you...

Lately my blog has been linked to several sites that contain strange anti-exercise screeds or imply in some way that endurance training is detrimental to one's health. One site,CrossFit, seems to be holding me up as some sort of caveat against “too much” endurance training, or maybe the CrossFit guys simply think my blog is cool. Either way let me dispel some myths about my heart condition and endurance training.

As I've said before , there is no reputable science that suggests or concludes that endurance training by itself leads to dangerous arrhythmias, or other heart conditions. A cocktail of conditions may encourage arrhythmias, and there is a very small segment of the population that has a genetic predisposition towards certain heart conditions, (AVRD/C, below) and to those people endurance sports and training can be detrimental in the long term. But for the vast majority of people, endurance sports are simply not going to damage your heart in any way. And to the vast majority of people a modest routine of aerobic endurance training is beneficial for heart health. For those who happen to be crazy about a sport that pushes endurance training to the extreme, as in my sport of bicycle road racing, or marathon running or cross-country skiing, there is nothing deleterious about pushing those limits, as far as heart health is concerned.

If my past behavior had any impact on my current heart condition, it was most likely the times when I raced or trained while sick. I’ve raced in subtropical countries, eaten bad food, drunk bad water, raced through colds and flus and bronchitis. The most likely reason for the scar on my heart that caused my arrhythmia is a viral infection that I was exposed to somewhere along the way. My condition was not caused by the overall training volume of my life to date.

There is a chance (genetic tests are still pending) that I am one of a very few who have a genetic condition known as Arrythmogenic Right Ventricular Displasia / Cardiomyopathy. While, technically, I do have ARVC (Arrythmogenic Right Ventricular Cardiomyopathy), the cause of this condition in most likely not genetic, but rather idiopathic (which basically means that they don’t know for sure). Genetic ARVD/C is a gradual weakening of the walls of the heart through the degradation over time of the muscular tissue. With this condition endurance exercise accelerates the process of degradation. Doctors recommend nothing more than walking, bowling, or golf as activities. Really bad cases of ARVD/C end up as candidates for heart transplant. The disease is still quite unknown, and more is being discovered every day.

Thus far my doctors have been pretty certain that I do not have genetic ARVD/C. There is no cardiac history in my family, and I have only a few of the telltale signs of ARVD/C that show up on an EKG. Even without these indications, I am having the genetic testing done just in case, but I have confidence in my doctors and, since November ‘08, have resumed a modest training program.

Regarding CrossFit and its anti-endurance anti-Long Steady Distance philosophy, I think there is some truth in it at the most basic level. “Specialist” endurance training is not for everyone, and certainly us “specialists” have grave weaknesses in all around fitness (don’t even ask me to do a pull up). But the notion that somehow short, predominantly anaerobic training will make you competitive at anything but the most amateur level in a specialist endurance sport is misguided, nor are most people committed to a specialist sport particularly interested in the kind of fitness CrossFit results in. In the case of bicycle road racing, for example, endurance-overload training effectively recruits fast-twitch muscle for slow-twitch use, extending endurance at the end of a 4 to 6 hr event, thus many road racers limit their anaerobic strength training. Fast to slow twitch muscle recruitment only happens with an LSD program. There are many other effects of LSD endurance training that are necessary to compete at the top level of these specialist sports, but that is a rant for another day...