V-tach

Overdue Update

2011-11-19T18:05:00.000-08:00

Greetings all! It is near the end of 2011 - over a year since I last posted - and my radio silence is due to a persistent lack of drama coming from the four chambers. Thanks to all the people who wrote me over that time, and wondered whatever became of me. Three years out from my last round of ablations and the status quo is pretty much as I described in my last post.

In that time I've become somewhat overly-employed, a good development in my chosen career of architecture, which is generally on the skids in the current economy. As a result, my training regime is less than I'd like, but more than most 50-60 hour a week workers. My heart has shown no ill effects, though I notice several consistent trends, what I call cardiac "noise". These have always existed, since my surgeries, but they come and go.

The first:

Low level angina (chest discomfort), mostly when I have either done too much exercise with too little ramp up, or have spent too much time sedentary - say more than 2 or 3 days. In the first instance, if I go out for , say, a 4 hour ride, and have not ridden or ran in the last few days, I sometimes feel a dull discomfort late in the ride and some time after. This is sometimes accompanied by PVCs, but nothing more.

The second:

Random and capricious PVCs. At no particular time for no particular reason. They are rarely persistent and I have not been able to connect them to diet, drink, or stress. They just happen. But they are far, far less than what I used to experience before my surgeries. When I am consistent with an exercise regime the PVCs pretty much disappear.

The third:

End of day/evening PVCs. Particularly on my bike commute home. These I attribute to hunger, and going from 10 hours behind a desk to a brisk, slightly uphill ride home.

That is about it.

My exercise program is this:

1 to 2 early morning weekday bike rides before work. Usually an hour long, fairly up tempo because they are short. I only live two miles from my workplace, so I head out to the 'burbs on the bike and do the commute I'd have to do if I lived there.

1 to 2 early morning weekday indoor roller rides, 1 hr each. These are done fairly easily. My rollers don't have much resistance so this is mostly about form and spinning.

1 to 2 short runs. Most of the time this is only the two-and-change miles to work, occasionally more.

Some weeks the run replaces the roller ride and vis versa, weather generally decides. If its raining I run. If its super cold I roller.

Weekends are more involved, mostly a minimum 2.5 to 3 hr ride each day.

To give you some sense of the overall load, my Garmin tells me I will have ridden just shy of 5,000 miles this year, at an average speed of 18.2mph, not including indoor riding, of which I've done about 63hrs this year thus far. Running-wise I will be at a mere 150 miles by the end of the year (I stopped running in the summer), at an average 8 min. mile (yes, we cyclists are weak on foot!)

All this is to let you know that there is life after cardiac ablation, even multiple ones, from all sides. And there is life with an ICD. Mine sits there, beneath my collarbone, neglected. I haven't even "checked-in" with my electrophysiologist in nearly a year. I wonder about it long-term, and the fact that it will need to be replaced, and the fact that it presumably saved my life once, and will it ever again?

My competitive athletic career is well behind me, but keeping active is a vital part of life, and seems to be the best thing I can do for my particular, unique, heart problem. And so I press on...

Until the next update!

Craig

Trials and (De)fibrillations

2010-10-19T13:13:00.000-07:00

All downhill from here...summiting Mont Ventoux, before my heart went south.

It has been one year and three months since I last updated this blog. This negligence has been due to general health and well-being, coupled with hyper-activity in the rest of my life – my final year of architecture school, and all the panic and excitement of exiting academia into a crappy economy. In all that time my heart held steady, except for one fun moment...

Shock of the New

Late February 2010...I’m deep into my “thesis semester” and back to living the life of a proper architecture student – not enough sleep, not enough exercise, too much caffeine, too much sugar, computer-monitor-eyeballs and adhesive-coated finger tips – the usual cliché.

Through this I try for –but do not always succeed at – a few hours a week either riding or running. Since recovering from my multiple ablations of 2008 I have noted that my heart does best when I get regular, moderate exercise. If I go more than a day or two without, I get a ramp up of PVCs accompanied from time to time with some low grade chest-pain. Likewise, if I exercise too much too soon – without a slow increase in time and intensity- I also get PVCs and chest pain. The key seems to be staying consistent and loyal to a modest exercise program, which is hard in the studio environment.

The day my defibrillator went off I was well rested, fed, and fairly unstressed. After a morning meeting with my thesis advisor I had two hours free and headed out for a short ride. The previous few weeks I’d mostly been doing intermittent, early morning hour-long roller rides before heading into studio, but this day the roads were clear of snow and it was unusually warm. Ten minutes into the ride, with no warning and no clear reason -riding along at a modest endurance pace- I went into V-tach. I felt it right away and stopped the bike. There was no doubt this was a legitimate bout of VT, I started my routine of vasovagal maneuvers –coughing hard and thumping my chest. The combination of manic coughing and VT made me a bit lightheaded, sending stars shooting across my vision. After a few coughs and thumps I felt that the VT had passed, I got back on the bike and turned around to go home and call in the episode to my docs. About twenty seconds down the road the defibrillator went off.

It felt like getting hit in the chest with a flying hockey puck while someone is popping two large balloons next to both ears and simultaneously turning out the lights. Yes, that’s right, this hallucination has visual, audible AND sensible components. People pay a lot of money for drugs that can do that, and I get it all from a little box in my chest. The shock did not knock me off my bike, though I probably bobbled for a second. I was moving at maybe 15mph. I immediately stopped to process what had happened.

Cell phone call to my EP at U Penn: after what seemed to be a standard-issue post-shock debriefing, the nurse on duty told me not to get back on the bike but rather find a ride home. That seemed silly, as I felt fine at this point, more traumatized by the implications of being shocked than by the shock itself, which was really less of a big deal than I had been expecting. I rode home at a pedestrian pace.

My “Carelink” transmission revealed that I had been in VT in the mid 200s (my ICD monitors at 160 and shocks at 225) The ICD tried “Anti-Tachycardia Pacing” (ATP) before shocking and was unsuccessful. With ATP the ICD tries to take over the rhythm of the heart electronically by first speeding up the tachycardia and then bringing it down slowly. It seems that that was happening as I was simultaneously trying my own vasovagal maneuvers. Perhaps the two techniques clashed and neither worked. I’ve generally vasovagaled my way out of VT in the past, so I was somewhat surprised that it didn’t work this time.

So the shock was legitimate, not a device error, and it came out of the blue. No Herculean effort brought it on, no over-indulging in caffeine or other substances, no cataclysmic event, just a random and capricious bout of VT. Nothing indicated this might happen before, and there were no “after shocks” after the fact. Not even a ramp up of PVCs. I saw my EP a few weeks later, we both agreed that I could start exercising again, that I should be attentive, and come back for some more testing when I had the time.

At first I thought this might lead to another ablation, but the episode turned out to be a complete outlier. Resuming exercise went off without a hitch. When I had the time, I slowly increased my maximum heart rate until I was occasionally hitting a conservative outer limit of 90% of maximum heart rate.

Techie Testing Talk

When school wrapped up at the end of May I went back in for testing. The goal was to induce VT, first with a treadmill stress test, a standard “Bruce” protocol. Generally with these stress tests the doctors are happy with anything more than 12 minutes, however I like to get a new maximum heart rate out of it and try to stick it for as long as possible while in a safe, controlled environment. My last stress test, in December of 2008, three months after my third ablation, I went to 17 minutes. This time I felt much better at 17 minutes, but the HR had been pegged at 175 for the last two minutes and didn’t seem to be going any higher, so I called it at 17. By the Bruce formula for estimating VO2max (14.8 - (1.379 x T) + (0.451 x T²) - (0.012 x T³) that put me at an oxygen uptake of 62.74 ml/kg/min. This in itself is pretty satisfying, as my tested VO2 high point was 72 ml/kg/min back when I was racing full time. I also tend to do much better on a bike-based VO2 test as I have pretty poor running efficiency. To have lost only 10ml over the course of years and through all the heart surgery, with a substantial part of my heart not contributing to its pumping, was further vindication of my hunch that my heart condition has not been getting progressively worse.

The second test was a “Non-invasive Programmed Stimulation” aka NIPS test. This is where they knock you out and run your heart through the gears using the ICD and several heavy doses of Epinephrine. Again, I was uninducable.

The results were puzzling but satisfying. In consultation with my EP, we speculated that I may in fact be “healing” the scar tissue created by my prior ablations; in other words the tissue that originally created the arrhythmia and had been put out of service by the ablation might have had a glimmer of electrical activity. This could happen again, of course. My exercising might in some ways encourage this process, but it is not a process of degradation, it is more a process of simple change over time, of what is generally considered positive “training effect”. If one of these sites of scaring comes back online on a regular basis more ablation on that site may be needed.

Though my heart was not remapped in an EP study, my ICD reading from the VT episode indicated that the VT came from the same area that it had always come from, indicating no new sites of scaring. The occasional PVCs recorded on my stress test ECG also verified this. I was given another get out of jail free card.

The State of Things

So now, as of October 2010, two years after my last ablation, and 2 years five months sporting an ICD, all is well. My activity level is as high as ever, I ride without limit – apart from work, and life’s responsibilities – I take no drugs for my condition, no special vitamins, no nothing. I ride in the hottest and coldest of conditions without ill effect, indeed I tend to ride better the hotter it is. I continue to harbor notions of competing again some day (perhaps in the more tempered “age-graded” events), but realistically I know this is unlikely. I worry about breaking my ICD, I worry about pushing too hard, and I simply don’t have the time to devote to being competitive. Never a “natural”, I’ve always had to train harder than everyone else, and now my developing architecture career is my priority and training is a luxury. So I confine myself to the occasional weekend throwdown and maintenance rides.

If any of this changes, if my condition worsens, or my defibrillator speaks up, I will document it again. In the meantime, silence is golden.

Racing with Hardware

2009-07-08T05:49:00.000-07:00

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"

2009-06-29T19:23:00.000-07:00

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...

2009-06-25T13:59:00.000-07:00

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"?

2009-03-17T09:15:00.000-07:00

"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

2009-02-28T08:54:00.000-08:00

(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

2009-01-10T15:10:00.000-08:00

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??

2009-01-02T13:29:00.000-08:00

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...

Fixed! Round 2: 12-hour light-sabre throw-down in my heart

2008-12-21T18:10:00.000-08:00

heart catheterization (artist's rendering)

The human body objects to all puncture. After being opened and reopened for medical purposes with small, considerate needles and scalpels, it defies my imagination how a human could endure arrows, bullets, swords, or spears. What seems to be the end game in my battle with Ventricular Tachycardia began with a duel between my left arm and a nurse who managed to roll all the useful veins in it while trying to install an IV. It ended with my much-more-proficient Doctor Francis Marchlinski light-sabreing his way around my pericardial sac, routing out insurgent electrical circuits. It was his third visit to my heart; almost as if the epic quality of this adventure was deserving of a trilogy.

As I explained before, an epicardial ablation is not the walk-in-the-park an endocardial ablation is. The chest is entered with a large, hollow hook-shaped needle (the same one used for epidurals), the heart is reached through the pericardium and a catheter threaded in the opened channel; other catheters are passed through the femoral arteries reaching the heart from the inside. The heart is mapped, the dangerous circuits identified and eliminated internally and externally. Endocardial ablations are completely internal and thus less invasive.

Dr. Marchlinski found himself in a spot of trouble upon sitting down to work. Apparently I had been so drugged up the previous days that my heart would not produce any V-Tach on the table. The first step in ablation is to incite the heart into its bad behavior, find the locus and zap it. But my heart, despite all the previous drama, was behaving itself. I was sedated but awake when they discovered this, strapped to the table and fully cathetered. The epicardial catheter had not yet gone in -they knock you out for that- but I could sense some frustration in the room as I was loaded with adrenaline and electronically pulsed to high speed. All told, I was on the table for twelve hours; it seemed I was awake for the first three. Marchlinski took a bunch of educated guesses as to the locus of my circuits. As a consequence many of my PVCs were also eliminated by the end of the day. The main culprit, the original V-Tach-creating-scar, was already well-known and identified through prior mappings, and although it wasn't producing V-Tach now Marchlinski spent extra time going over it. In the end the diligence seemed to work. I was Dr. Marchlinski's first repeat customer for epicardial ablation for V-Tach, and, I'm sure, we both hope, his last.

I emerged from surgery in much better shape than my previous epicardial. I spent 24hrs on my back in a Dilaudid haze, unable to move because of the holes in my chest and groin. But I wasn't a paranoid mess like last time. It was all fine. My heart was utterly steady. I couldn't remember the last time it had been that way. The 12 hours on the table, the repeat surgeries, the cardiac breakdowns, were all worth it for this.

In a matter of days I could tell things were going to stay stable. While my body recovered from the surgery the soreness and sleepiness overshadowed the great feeling of a heart beating just like everyone else's. But after two weeks I was ready to declare myself victorious. I introduced a couple caffeinated beans to my morning brew. No worries. I had a sip of wine. No worries. A few days later 2 glasses of red wine. Nada. More caffeinated beans. Finally, three weeks out, I reintroduced exercise...

Fixed! Round 1: Drugs, drugs, drugs

2008-12-18T16:36:00.000-08:00

welcome to the medical-industrial complex...

Greetings from the land of inconsiderate bloggers. The radio silence doesn't mean I died, in fact between now and my last post I've been completely fixed and too busy reveling in it. It may be temporary, it may be permanent, but for the moment my heart beats normally -so normally that three weeks after the miraculous third (3!) ablation I hefted myself atop my bicycle and started riding like I was 22-years-old and unemployed. That is to say, from November 4th (another miraculous day) to scant days ago, I rode or ran every day for six weeks straight, a minimum of 30 minutes on the feet or one hour on the wheels. That is how fixed I am.
Other amazing consequences of fixedness: I can drink coffee, red wine, or eat a large meal and copious chocolate without degenerating into mad PVCs. I can go up stairs without feeling like I just threw out my clutch, I can face a cranky final review jury (architecture school, remember) without massive deleterious RPMs. And, as of two weeks ago, I am doing all of this without any drugs. How did this happen? It wasn't easy. Here's a breakdown:
My last post detailed a cardiac freakout brought on by an ill-advised stoppage of my beta-blockers. There was a disastrous treadmill test, a day of intermittent VT and frantic reloading of beta blockers.
I went home the next day, heart calmed by the drugs. I returned a week later for another stress-test. All doped-up, I eeked through 15 minutes on the ERG barely putting my heart above 150. "He can make it to Christmas!" was the pronouncement. I went home again. Back on a much heavier beta dose I still continued to have bouts of PVCs, sometimes they were super strong and persistent, but generally I felt like I was back on track relative to where I was before my collapse. This happy state of affairs lasted about three weeks.
One fine Monday afternoon as I scurried about the architecture building preparing for a studio review, I went into V-Tach. No warning, no preamble, no reason. Totally unexpected. I didn’t believe it was real, I blamed myself: must be a nerves, pre-presentation panic. But the presentation was a minor thing; and here I was, after two ablations, an ICD implant, and months on beta-blockers, and I was more symptomatic than before.
I sat down, gave a couple coughs and vaso-vagaled my way out of the V-Tach. I gave my little presentation, felt much better, and decided that I maybe I was just over reacting to some PVC runs. But on my way home from school I went into V-Tach again. And for the first time in my life coughing wouldn’t clear it. I got home, put my heart rate monitor on but it wouldn’t read. I wandered around in a panic for ten minutes before deciding I needed some medical attention. As a neighbor drove me to the school infirmary the V-tach stopped. Later I found out my ICD recorded 20 minutes of V Tach in the 150-180bpm zone.
At the infirmary my heart was bubbly with PVCs, but there was no evident V-Tach. It wasn’t clear what precisely had happened. I was sure I had been in VT for at least ten minutes, but it was my word against my now (reasonably) stable heart rhythm. Then I remembered the FedEx box moldering on my front porch.
A few weeks prior I received said box from Medtronic, the manufacturer of my ICD. It was a “Carelink”; basically a modem for my heart that reads my ICD and sends the data to my doctors. Receiving this new “peripheral” annoyed me. The user’s manual cover image shows the “Carelink” sharing bed-side table space with family photos, and a lamp only your grandmother would love. The target population for this device was forty years my senior. The whole thing seemed to imply that with my new ICD I was going to need constant monitoring for the rest of my life.
I instantly had a problem with this. First, I don’t like the idea of being involuntarily networked into the medical-industrial complex that I have unwittingly become dependant on. Not that my heart function is particularly privileged information, but I have no desire to become mentally dependant on this essentially nonessential device (the instruction book recommends you take it with you on your travels and tells you how to troubleshoot a hotel room phone line).
The other issue is that I have no land line, and the Carelink needs a land line. When I moved back to the US in 2004 I went completely cellular. Now there was no way I was going to drop 50-odd bucks a month for a land line so that Medtronic could keep tabs on me. I’m sure there are ICD recipients who need constant monitoring but I didn’t consider myself one.
But sitting there in the infirmary, trying to figure out what was going on, the Carelink seemed an excellent tool. My roommate came by with it later that night and we got it to blink and make some chirping sounds. I spent the night at the infirmary while my ICD data dropped into some virtual box at the University of Pennsylvania by which time it was the next morning and I was back into V-Tach.
Again, it started innocently enough. Sitting in my "Property of Princeton" jammies, munching a bagel at 9 am, I suddenly realized I was in V-Tach. I wandered over to the nursing station and announced my predicament and immediately had the entire Princeton University Health Services staff in a panic. Gurneys and EKG's were rolled in, IVs administered, and ambulances called as my heart thumped away. This time it got pretty bad. I never passed 200bpm but I was feeling pretty faint and the inability to at least break the V-Tach periodically with a cough was discouraging. After a half-hour in persistent V-Tach I was ambulanced over to the local emergency room where things calmed down. The day passed at the local hospital while arrangements were made to ship me to U Penn, an hours drive.
That night, pumped with yet more beta blockers I was back in the U Penn CCU. This is when it all began to feel like Groundhog Day ( a trope in my life of recent). Again, I was back in the hospital for an unplanned stay. Again, the only reasonable thing to do was increase my beta dose. But the larger question: why was my condition degrading so persistently from week to week?
My electrophysiologist Frank Marchlinski stuck by his original assessment of my situation. My heart was healing from the previous ablation in a way that turned my errant circuits back on. And this time they were more persistent, but slower and less lethal.
Clearly I was not making it to Christmas. A repeat ablation was scheduled for the following tuesday. Loaded with enough beta blocker to knock out an elephant, I was sent home for the weekend to rest up for the third attack on my blown heart.

World’s Toughest Fix

2008-09-23T19:56:00.000-07:00

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.

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

2008-08-25T21:11:00.000-07:00

(Back-written)
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...

PVC Hell

2008-08-15T15:19:00.000-07:00

an amusing explanation of PVCs and other arrhythmias, be patient there is no audio

By the second week in July, two weeks after my epicardial ablation and ICD implant, I was starting to feel functional. I went home from the hospital with specific, doctor advised “dos” and “don’ts” and some self-created “cants” “and won’ts”, mostly to prevent the ICD from shifting around in its chest pocket and the lead from pulling out or breaking inside the heart. These scenarios can keep you up at night, especially when you have a ghost sensation of the lead poking into your heart as I did.

I was told not to raise my left arm above my head, extend it behind my back or too far to one side, and lift nothing more than a few pounds. I was told not to drive for two weeks. The arm-moving moratorium lasted for six weeks and I was given a sling to wear at will if I felt I was going to forget. The sling wearing lasted a day or two, and after that mostly at night in bed to keep me from flailing around. When I felt good enough to go out I took it with me in case I was feeling nervous about being bumped into in the subway or on the street. The sling was a little sign that said “injured dude approaching.”

The sling also helps deal with the initial discomfort of the ICD. The whole arm/shoulder/pectoral area throbbed for many days and I enjoyed many Percocet. After a week I voluntarily kicked the painkiller, I was worried about getting too familiar with it and the pain had become tolerable. The ablation also left a residual pain in the chest like heartburn. It came and went randomly and seemed to be connected with the continuation of errant heartbeats. On leaving the hospital I was told to expect lots of PVCs for some time. Premature Ventricular Contractions are explained elsewhere on this blog, but basically the phenomenon -in addition to existing as a relatively benign cardiac anomaly- is a temporary byproduct of most kinds of cardiac surgery or other intervention. PVCs are the heart’s way of being cranky.

My heart was pretty damn cranky for many weeks. I had been given the same beta-blocker I was on pre-surgery, Metatoporol, to calm the heart down and lessen the PVC’s. But most days and seemingly every night I was plagued by bouts of PVCs. Often every 2nd or 3rd beat was a PVC; when translated into dance beats this equates to a kind of reggae-samba.

As I recovered the PVCs lessened, but when they were around they were loud and proud. At their worst they feel like a small caged animal thumping on your ribs, sometime the thump extends up the neck and throat. Other times PVCs are barely noticeable. In the right patient (i.e. me) a run of PVCs can deteriorate into V-tach and sometimes enough PVCs will actually feel like V-tach, particularly to a new ICD recipient who is paranoid about being shocked by the bloody device. All this makes for sleepless nights and panicked moments. I didn’t dare do anything too sprightly, no running up stairs, or for a train, no lifting heavy objects, and definitely no bike riding. On several occasions my girlfriend would lie awake at night, her head on my chest and remark “I don’t think you are fixed.”

Four weeks post-surgery and my arm was suddenly better. My range of motion was returning and my PVCs started to quiet down. That Friday I was in New York City and had run out of my beta-blocker and didn’t have my prescription. I was feeling good all the same and we went out to dinner and a movie. Some combination of heavy French food and Cote de Rhone and slacking on the beta-blocker suddenly made me light-headed. I slumped over onto my girlfriend and fully expected a shock from the ICD. Then as quickly as the feeling came it was gone. We left the restaurant and went to the movie where I slipped into a nasty run of PVCs that I thought was V-tach. It was enough to make me leave the movie, take a cab to the nearest CVS and down some beta-blocker. ( I now owe my girl friend two tickets to Man on a Wire and a coffee with Philippe Petit, who was in the theatre for a post-showing Q&A).

The experience shook me up, I assumed I had at least one run of V-tach that night. Monday I got an appointment with my electrophysiologist for a reading of my ICD. The cool thing about the ICD: memory. It records basic information about your heart function 24/7 as well as any events that might be shockable, or almost shockable. I was sure my ICD was going to tell lots of stories about the depravity of my heart....

Stage Two: ICD Implant: The Grim Details

2008-07-25T20:40:00.000-07:00

Post-surgery round two -The ICD, where it's at...

I am currently five weeks out from my ICD implant and the thing still feels like an alien invader that somehow burrowed into my chest. There is much to talk about on the subject of the ICD -“Internal Cardioverter-Defibrillator”- and, I suppose; I have the rest of my life to do it. The alien in the chest is a permanent fixture. I’ll start with the surgery and the big question for those of you tuning in because you are about to receive your own alien: subdermal or subpectoral?

Thirty-six hours after my epicardial ablation I was carted back down to the electro-physiology lab for the surgery to implant my ICD. I received a Medtronic Virtuoso, a battery powered lozenge measuring approximately 3”x 2.5”x .75” and shaped like an asymmetrical lima bean. Its job is threefold: it paces the heart should it go too slow (this is not an issue for me), it attempts to pace the heart down if it goes into a fast, dangerous rhythm (i.e. ventricular tachycardia), and lastly it delivers a defibrillating shock should its pacing efforts fail.

The lima bean body mostly contains the latent energy needed to shock a heart back into action. Somewhere there is a small chip containing the device’s smarts, connected to a “lead”, which is a wire threaded along a vein and embedded into the heart muscle with a tiny screw. Depending on each individual’s heart condition one may need more than one lead. The whole thing is substantially larger than a conventional pacemaker, owing to the need to deliver big voltage to the heart (I’m not certain about the specific voltage, I think it is an ascending scale of shocks starting at 50 volts and going to 700, if anyone has more specific information please correct me).

Normally the ICD is placed in a pocket created under the dermal layer in a spot below the left collarbone. In my case I was given a sub-pectoral pocket, which sits under the dermis and the muscle and requires more cutting of flesh, more time in the operating room, and more recovery.

The subpectoral placement is an option I was not aware of until the day before the surgery. Through all of this I have been most concerned about the ICD restricting my lifestyle, specifically cycling, but also rock climbing back packing, etc. At one point I was planning to take a magic-marker to my chest and outline the location of the straps of my backpack with “do not put ICD here” instructions. That proved unnecessary.

The default positioning of an ICD is under the skin, beneath the collarbone. In this position the device is prominent, especially on smaller, skinnier people. In addition to the obvious aesthetic issues, a subdermal ICD is more easily jostled, tends to shift in its spot, and can be quite painful if accidentally whacked. There are also incidents of leads breaking or being pulled out. Basically a subdermal ICD is a constant reminder of one’s problem. It is also a liability for sporty types. It is less protected and therefore more easily damaged.

This image gives a good sense of just how much a subdermally positioned defibrillator sticks out. This is Gary Swain, an ICD recipient who climbs big mountains while waiting for a heart trasplant. His story here.

From perusing the ICDsupportgroup.org I discovered that many people are not even made aware that there is an option for ICD placement. My understanding is that electrophysiologists who do ICDs don’t like to do subpectoral implants because it involves more surgery and it is more time consuming. Electrophysiologists are not surgeons; their work rarely requires cutting people open, most of it is done via catheters and computers. So the bulk of ICDs are places subdermally.

Because all my work has been done at a large research hospital, the University of Pennsylvania, my electrophysiologist Dr. Marchlinski, does not do implants. They have specialists for these things. Mine was a Dr. Josh Cooper. There are benefits to having an ICD implant specialist. Dr. Cooper seemed almost anxious to do a subpectoral implant.

The surgery itself was a walk in the park compared to the epicardial ablation. It is done under conscious sedation. The operating room is similar to the EP lab, with almost as many nurses and technicians present as an ablation. I was given a local anesthetic and a heavy dose of sedative. Covered by a sticky blue sheet, including my face, I eventually fell asleep but I do remember feeling some painless poking around in my chest and something that I took to be cauterizing. There was some heat and a burning smell and I remember asking the doctor if they were making a crème bruleé. The whole thing took about three hours, the most time consuming part being the threading of the lead and screwing it into the heart. I imagine a one-inch wood screw.

Recovery was rough. I was dealing with both residual chest pain from the epicardial ablation, and this new source of discomfort: muscles that needed healing and an internal hardware that my body had to adapt to. That night my heart complained vigorously, in the form of PVCs and general ache. My left arm was restricted to minimal motion, not that I was able to move much anyway. I left the hospital the next day, but I didn’t feel very fixed.

Marco Villa Retires Due to Cardiac Arrhythmia

2008-07-20T11:02:00.000-07:00

photo copyright Nick Rosenthal

Cyclingnews.com reported yesterday that Italian six-day specialist Marco Villa has retired at 39 years of age due to an unspecified arrythmia:

"Noted Six Day rider Marco Villa was forced to retire early when he learned that he had an irregular heart rhythm, UIV.dk reported this week. The 39-year-old Italian was intending to retire next February, but learned of his condition after a medical control for Olympic candidates earlier this year.

Villa said, "Originally it was my plan to stop after next winter, with the Six Days in Cremona in February 2009 as my definitively last race. But as a member of the group of Olympic candidates in Italy, I was called in for the normal health-control. That control showed some irregularities in my heart rhythm.

"They couldn't exactly tell me what was wrong, but the doctor's advice was that I should refrain from racing for at least a few months," he explained. "At my age it is not so easy to take a longer break, so I decided to stop now instead of taking any risks. I have had a wonderful career and I have a lot of good memories, and I want to let it be like that."

36 year-old Olympic Canoeist Gyorgy Kolonics Dies of Heart Failure

2008-07-17T10:15:00.000-07:00

Part of the purpose of this blog is to provide a resource for endurance athletes with arrhythmias. To that end I will try to keep a running tab of athletes whose cardiac issues have made the news. This past week there was an especially tragic story.

For now it is unclear that a fatal arrhythmia killed Gyorgy Kolonics, a canoeing gold medalist at the 1996 and 2000 Olympics. The media has listed the cause of death as heart failure. Often cases of sudden cardiac death in young athletes -Kolonics was 36 years of age - are due to an electrical problem (i.e. an arrhythmia) rather than a structural one, but rarely is there a follow-up in a premature death like this. Below is an excerpt from an article by John Horvath on www.ohmynews.com which details the circumstances of his death and the fact that there was no defibrillator on site:

"Kolonics... had fainted while rowing and was immediately taken to shore where his coach and teammates desperately tried to resuscitate him. Kolonics died on the scene, however, soon after the ambulance arrived and despite the best efforts of paramedics. Although the precise cause of death is still unclear, what is known is that he died of a massive cardiac arrest.

As tragic as the death of Kolonics has been, there are still many questions left unanswered as to why the tragedy happened. As Kolonics was a professional athlete who participated in many world championships and took part in two Olympics, it is hard to imagine that someone in such great shape could suddenly and literally drop dead. Admittedly, Kolonics was in his mid-30s, which in the eyes of most sport professionals is retirement age. Kolonics himself admitted that he wasn't sure how he would be able to handle the training, but he nonetheless was looking forward to taking part in what he viewed would be his last Olympics as a professional athlete.

When it comes to sport, Hungary has some of the best training facilities and resources in Europe, if not the world. Unfortunately, because of budget constraints some of these facilities and resources are underutilized. Still, the general preparation for athletes is at a very high level. This includes a strict regime for the medical supervision of all athletes. Kolonics underwent his most recent medical tests in April of this year, and the results showed that he was in perfect health. Thus, his sudden death remains puzzling to many.

From the first time a call for help was made, it took about 40 minutes for the ambulance to arrive. To make matters worse, the ambulance that arrived on the scene was not fully equipped and the paramedics were not fully prepared for the task at hand. Later, it was revealed that another ambulance with more qualified personnel was closer at hand and could have made it to the scene much sooner. To make matters worse, a medical helicopter was also available that could have reached the area within 5 to 10 minutes.

Sadly, even during such tragedies politics in Hungary seem to go on as usual. Etele Barath, a member of the ruling Socialist Party and head of the Hungarian Canoe and Kayak Federation, appeared keen to sweep the issue immediately under the rug as he avoided critically appraising what had happened. Subsequently, it was determined that there was no need for an official enquiry. The authorities accepted the official version of the National Ambulance Service that the ambulance arrived 17 minutes after it had received the call. Yet this call was not the initial call; the first call got lost in the chaos of the dispatcher service."

Stage One: Epicardial Ablation, the grim details

2008-07-02T09:39:00.000-07:00

Post-surgery-round-one. The orange blob on my chest is a sterile coating around the incision made under my sternum. There is a catheter in the pericardial sac to drain off excess fluid, which goes into the small, shiny pink bladder lying on my stomach. The contraption in the lower left corner is a PCA, the magic machine that lets me administer my own pain meds.

It is one week after the final assault on my ventricular tachycardia and the haze is starting to lift. I have two new holes in me. The first lives front and center on my chest, just below my sternum. My girlfriend Molly says it looks like the pouting lips of a blowfish. It is tiny, approximately a centimeter across. It is now, a week later, sealed up enough for me to shower with impunity. This remarkable little hole marks the passage created to gain access to my heart and destroy That Which Would Destroy Me.

The other hole was considerably larger, a one-and-a-half inch incision in my left pectoral which now holds a "Dick Cheney Signature" Medtronic Cardioverter-Defibrillator (now for liberals!!!) The defibrillator is its own story and gets its own forthcoming entry. For now we'll stick to the blowfish mouth.

The first stage of my two-part surgical voyage last week was an epicardial (exterior of the heart) ablation. You may recall that my initial endocardial (interior of the heart) ablation was unsuccessful. The site of scaring on my heart was large and deep, spanning a 3cm by 2 cm portion of the wall of my right ventricle. With scarring of this nature it is often the case that the less invasive endocardial ablation will not do the trick (I saw a 45-75% success rate somewhere). The day after that ablation I passed my stress test, and was sent home. But in the weeks that followed portions of the site returned to normal and the tissue that created the malevolent circuits responsible for V-tach came back online.

The scar itself can be imagined like a lattice, web or tic-tac-toe board. The spaces in between the lattice are unscarred tissue, but because these bits of tissue are separated from the rest of the heart by the scar, they create their own, independent rhythms. These rhythms can hijack the normal rhythm of the heart and create V-tach. In the ablation these areas of tissue are cauterized with radio-frequency waves, which cause them to scar as well. Ablation is a tic-tac-toe game; hatching the void areas in the lattice to create a harmless uber-scar.

The new approach was to attack from the outside a longer, more complicated and riskier procedure. After checking in the day before for overnight monitoring, I was wheeled into the U Penn electrophysiology lab at 7am. This is as much to pack the day with cases as it is a precaution in case more complicated surgeries run long. The first part of the procedure was done with conscious sedation. I was thoroughly catheterized; two cardiac catheters were placed on either side of my groin, one for the left chambers of the heart, one for the right. These were for purposes of monitoring the action that would take place on the outside of the heart, and to deliver pacing pulses when needed.

I was also given a Foley catheter, an incidental I had been dreading for weeks. This is basically a penile hose that goes up the urethra to the bladder, where it drains any urine produced during surgery. It would stay in for the next 24 hours, as I was unable to move during that period. I grew to love the Foley. It proved enormously useful. Imagine, you can drink with impunity and never have any pressing need to pee. It was not uncomfortable and I was so sedated I never noticed it going in. Thank you Mr. Foley. Of course I was never able to sit up and actually make eye contact with the thing, which might have been stressful...

There was an initial round of remote control V-tach as target sites were located and then the anesthesiologist stepped up and I was knocked out right and proper. The chest hole was opened up and a sheath inserted to guide other catheters into the "pericardial space" and through the pericardial sac . The pericardial sac is a protective layer surrounding the heart that reduces friction between neighboring organs and gives the heart its own space. Through this hole a catheter was maneuvered which probed the outside of my heart and mapped the areas in question. Another catheter applied the ablation, bursts of high-energy RF waves that cauterize the scar. Dr. Marchlinski concluded by running my heart through the gears, trying to induce V-tach. I was uninducable.

This process took 8 hours. I was wheeled out of the lab at 3pm. I awoke in agony. My chest felt crushed. It is a difficult sensation to express, but I suppose it must be something akin to getting stepped on by an elephant. I asked for my Mom, a nurse herself. I didn't want the rest of my family to see me moaning like this and I knew she would be a good advocate. There were nurses on hand to run me through a gamut of pain meds. Percocet, Fentanyl, Morphine, and finally Dilaudid. Only the Dilaudid had any impact. Dilaudid is, according to Wikipedia "about eight times stronger than morphine and about three times stronger than heroin". After that I was a giddy, pain-free mess.

I was hooked up to a PCA, "Patient Controlled Analgesia", a pump tapped into my IV that allowed me to administer my own dose of Dilaudid via a little button on a wire. It sounds a bit like a lab-rat experiment and it is; the PCA lets the patient administer only a prescribed dose per hour, after that limit is reached the rest is just the placebo affect of hitting the button. It works. I was mostly pain free that night.

But the drugs were making me anxious and paranoid. That night Molly stayed in my room in the ICU. I was having panic attacks. I kept my head tilted constantly to look at the ECG monitor overhead, checking my pulse, blood pressure and oxygen levels, and detailing any errant rhythms my heart was producing. And there were a lot. The days after surgery are filled with errant beats, PVCs, and small runs of V-tach that keep you on your toes. The heart is aggravated and enflamed, and it takes long days to calm it down. I knew this, but the Dilaudid made me think that every thump in my chest was going to kill me. It was a long night. Molly woke with every panic attack and reminded me of what reality was.

This continued into the next day. By the late afternoon I asked to be taken off the Dilaudid. The pain was down, and although there were occasional moments of drug-induced euphoria, mostly the stuff was making me freak out. I was taken off the PCA and the Dilaudid and put on Percocet, administered by my nurse. The second night was calmer; I was taken off the ICU and given a bed in a shared room next to, of all things, a cardiologist with Marfan's Syndrome. He heard one of my panic attacks and poked his head around the curtain to let me know that I was not, in fact, going to die, and if I needed any help he'd be there for me.

I slept poorly. The next day would be my second surgery, to implant my defibrillator. I was feeling unprepared. I hadn't been able to eat from Monday night until Wednesday afternoon, and when I finally had the catheter removed from my chest and was able to sit up and eat, I had no appetite. I consumed maybe 500 calories in 3 days. Hardly a robust candidate for a second surgery.

Coffee Break

2008-06-20T14:37:00.000-07:00

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.

I Can't Drive 55...

2008-06-10T09:06:00.000-07:00

...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.

Viatcheslav vs. Chicken Little

2008-05-29T22:04:00.000-07:00

NOT Viatcheslav...myself, heart intact, circa 2005...photo: ©Marco Quesada (velocitynation.com)

If there is a paramount of self-sacrifice in the name of sport I am not it. Countless cyclists have trained harder, longer, faster for more years and to more effect than I could ever boast. So why am I saddled with what appears to be the cardiovascular equivalent of a repetitive motion injury?

Dr. Francis Marchlinski has a few ideas. After my surprise introduction to the defibrillator last week, Marchlinski gave me an extra-long bedside consult. In a nutshell: For some cases a cocktail of conditions seem to brew the perfect cardiac storm. First is a genetic predisposition. I have not yet been tested for this anomaly myself, but research currently being done in Italy has linked a certain gene with a predisposition to cardiac scarring. Second is a reason for scarring. Among things that lead to scarring of the heart are viruses and bacterial infections. If one has the genetic predisposition one can end up with scarred heart tissue from a simple influenza virus. Third is the stress an endurance athlete puts on his or her system. Taken as a totality -genetic anomaly, exposure to disease, year-in-and-out physical stress- one MIGHT (and I cannot overly stress the MIGHT) develop an acquired arrhythmia.

Some media outlets have taken this to Chicken Little extremes. A widely disseminated article by Agence France Presse (here carried on the Discovery Channel of all places) almost seems to be telling us to retreat to our couches and TV sets, or else... "Most athletes pay a physical price for their love of the sport, but the ones who engage in endurance sports may be pushing their bodies to the brink of heart failure, according to a new study", we are told. This is alarmist. A more balanced, if a bit technical, consideration of the infamous Heidbuchel study is here.

So who needs to worry? If acquired arrhythmias were solely a function of elite cycling performance then I certainly would rule myself out. I'm not your typical recreational cyclist, but I am not a Viacheslav "Nails" Ekimov - who belted out 400+ mile weeks 52 weeks a year from his debut in the Soviet sports system at age 15 to his retirement from Team Discovery Channel at age 40. I did spend probably too many years trying to "make a go of it" for my level of talent, six years as a New York City messenger, four years of full-time racing, eight years in France, all told it probably amounts to something in excess of 100k miles, but I couldn't be sure. What I am sure of is that I was never particularly smart or cautious about riding while sick or injured. I was a foolish follower of the "Euro-tough" mentality so many competitive cyclists consider nescessary for success. I've ridden through colds and landed myself with bronchitis on several occasions. Is that what set me up for my V-tach? Again, nothing is clear. But knowing what I know now I would certainly encourage everyone to STOP RIDING while sick or over-tired.

Other things: It is certainly worthwhile being alert to any feeling of palpitations or missed beats. There are plenty of opportunities to rule out the possibility of having a dangerous arrhythmia, so by all means take them. It starts with a basic EKG, and for 99% of the population it stops there. Plenty of people have perfectly benign arrhythmias. If you have any doubts, make sure yours is one.

Finally: Be alert to "sycope" (pronounced sin-cope-ee). This is the phenomenon of fainting or nearly fainting. The combination of syncope and palpitations may indicate something more serious. I attributed some rare moments of passing out and frequent near-pass-outs to the low blood pressure that comes with being fit, but it turns out that these were clues to my larger problem.

I would never tell someone not to ride or race for fear of getting what I got. The sport is good, the sport is healthy, enjoy it to its fullest and, for chrissakes, "ne paniquez pas!"

Defibrillated!

2008-05-22T06:51:00.000-07:00

Above is the latest physical manifestation of my condition: the welty burn mark of a defibrillator paddle on my right pectoral.

The backstory: Monday May 19th I was carted off to the cardiac cath lab at U Penn for a follow up electrophysiology study (EP) to determine if the first round of radio-frequency ablation had been a success. Briefly, an EP study is a standard cardiac catheter procedure, in my case the catheter is threaded into a vein through an entrypoint in my groin, it snakes up into the heart and from there it gathers information about the state of things.

For my condition the electrophysiologist "paces" the heart, trying to induce ventricular tachycardia, first with electricity, then with drugs, then with a combination of the two. The hope is that I am un-inducable and then I get to go home with a clean bill of health and start my life again -more or less. That did not happen.

First I produced unsustained V-tach, minor things lasting a few seconds. Next were a few longer runs of sustained V-tach, and finally a seemingly endless run. The last run I was in VT for about 30 seconds when Dr. Marchlinski starting fretting, and ordered the defibrillator prepped. First he waited a bit to see if I would come out of it on my own. As anyone who's watched a made-for-TV medical drama you know there is a specific order of commands before defibrillation. In my case the technician pulled the trigger on the wrong command. I suspect I got hit at the moment I was starting to come out of V-tach naturally. I've been in V-Tach a few times and never had to be defibrillated. Furthermore normally when they defibrilate a conscious person they hit you with sedation right before they defibrillate. My nurse was in the process of injecting my IV when I got shocked, so I felt the full voltage with zero medication. It was pretty bad, the equipment around me had not been pulled away so I was slammed into a monitoring unit about six inches above my head and chest. When it was over the first thing I asked was if I still had all my teeth. I can't say its like anything I've ever felt. Apparently the technician was new, when it was over Marchlinski gave him a serious dressing-down.
So the upshot of this EP study: All the remaining origin sites of the VT were on the outside of the heart, so no ablation was done. Dr. Marchlinski wants to go in from the outside, performing an epicardial ablation, a proceedure that has only been done since 2000. It requires going in under the sternum, and is a full day of surgery with full anesthesia. Dr. Marchlinski is confident about the location of the site, it is far away from areas of the heart that might be damaged by epicardial ablation, and he thinks it will be successful. He claims a 100% success rate for all epicardial ablations he himself has performed (the national average I looked up is 84%)
After that he is definitely recommending the ICD, as with all V-tach patients there is no guarantee that there won't be a relapse. One thing we learned with the accidental defibrillation is that I won't go into the continuous loop of shock-V-tach-shock that Dr Marchlinski was worried about before.
So my return visit is now scheduled for the week of the 2nd of June. With both the surgery and ICD it will be 4 to 5 days in the
hospital, and wil likely require more recovery than my past visits. The ICD limits activity for the 6 weeks post-implantation in
order to allow the leads to "bed-in" to the heart.

Treadmill Redux

2008-04-29T14:09:00.000-07:00

The day after ablation and all is well in the world. Except that Marchlinski has ordered me back on the treadmill. It seems a bit soon after seven hours of cardiac cath., 24 hours with no food or water, and a fitful, uncomfortable sleep. But Marchlinski can do no wrong so I oblige. Afterall he is excited to test his work, and I am excited to prove myself fixed.

The treadmill looms large, This time I fear it. The resistance is ramped up. We get to eight minutes -the point at which everything came crashing down the last time. I cruise right by. The heart rate hits 150 without trauma, I do 12 minutes, the doctor in charge asks me if I want to continue. Feeling out of the woods and anxious to prove it, I say yes. We plod on. At 14 minutes I am at 163. There are PVC's on the EKG readout but nothing terrible. The doctor says it's my call, whenever I want to stop. Just because it is so good to be in control of myself once again I tell him I'll go to 15 minutes. At 15 minutes they shut the infernal thing down. I've reached 172 bpm with no V-tach.

Marchlinski comes by for a consult. He's highly pleased. But there are two caveats. First: because of the speed of my V-tach, and its ease of trigger with adrenaline, he is not recommending an implanted defibrillator until he knows more. He wants me to go home, resume life for three weeks, and come back for another electophysiology catheter study. In the meantime it is Beta-blockers and no exercise.

The other caveat is that I might not be fixed. There are areas on the outside of the heart which may not have been properly ablated but we won't know until things rest up and heal. So the return visit will determine that status. I'm so happy I did so well on the treadmill I can't imagine that I'm not fixed. I make a mental note to start some light exercise as soon as I feel up to it.

I Wanna Be Ablated

2008-04-27T13:26:00.000-07:00

The day after my treadmill blowout I was prepped, punctured and probed in a procedure known as catheter radio-frequency ablation. At midnight the night before I was not allowed to eat or drink anything until after the procedure. The whole thing seems pretty innocent, and if you peruse the 'net you'll find all manner of happy ablation explanations and stories. I've even read "geting (sic) wisdom teeth pulled is harder". My ablation, however, was epic.
There is probably a vested interest in making the procedure seem benign, hundreds of thousands are performed for all manner of cardiac anomalies, not just ventricular tachycardia. And it is a genuinely advanced, remarkable and relatively less invasive procedure, relative to, say, open heart surgery.
The electrophysiology lab is basically a specialized operating room. There were at least 15 large, flat screened monitors, including a bank of four perched on an arm above the operating table. The CPU power rivals NASA mission control. I'm wheeled in to the sound of classic rock as three technicians and nurses prep me. This involves entry-point hair removal, a gazzilion leads and wires stuck to my front and back (including a defibrillator), and the application of several lovely warm blankets which unfortunately cool down way too quickly. The room is cold, in the low 60s, and little naked me got to shivering almost immediately on the operating table. Prep took a good hour, then sedation was administered and I was vaguely aware of some fiddling in my nethers followed by a sensation of strange worming activity in my chest as the catheters went in. Doctor Marchlinski came into the room and the classic rock changed to easy listening. I drifted off to Sade's Smooth Operator. When I awoke my heart was being run through the gears, electrically stimulated in order to locate the sites of my V-tach. The heart is "mapped" via this process. V-tach is induced and the errant tissue located. It is bizarre, you have no control over your body, your heart is riding up Alp d'Huez but the rest of you is stock still. Full consciousness is required to get a proper cardiac response, so once they started mapping and ablating I wasn't allowed any more drugs. Once the mapping is done the ablation is performed with another catheter, tipped with what I imagine to be ET's finger.
My sites were large and varied. It took 55 "burns", individual ablations, to finish me up. The whole thing lasted 7 hours. Some ablations were without any pain. others felt like getting stabbed from the inside. Early on Dr. Marchlinski discovered that I had a large site on the exterior of my heart. He tried reaching it from the interior by zapping the bejesus out of that spot. That is what hurt the most. I begged for some sedation and got a little reprieve. By this time my back had gone numb from lying there for so long and I was shivering with cold. When it was over I couldn't move for six hours while the entry-point for the catheter closed up. The whole procedure, coupled with the lack of ability to move and thus being unable to pee for a total of 13 hours was, to date, the most uncomfortable thing I have been through. I don't care what the CIA says, there is something called a "stress position", and it can be simply being strapped to a bed for 13 hours.

So THAT's what's wrong...

2008-04-25T12:41:00.000-07:00

Monday the 21st of April. University of Pennsylvania Hospital. I brought my running shoes, ready to pound the treadmll into submission. Now, bear in mind I haven't done anything other than climb some stairs in over one month. Upon check in I am on a perpetual cardiac monitor. Every move I make, my heart's reaction is recorded. Happily I find my low heart rate hasn't gone the way of my fitness. I'm getting gurneyed around the joint, all the while beating steadily in the mid-40's.
I step up to the treadmill. We go through the paces. There is a casually dressed intern, and a nurse, and we are talking bike racing -there always seems to be someone interested in bike racing. The doctor increases the resistance on the treadmill, I respond. I look over at the monitor and I am PVCing all over the place. Steady "sinus rhythm", the proper healthy heart beat, is muscled aside by wild, baroque lunges of the EKG's readout. I feel fine, though and my heart rate is now 120. The resistance goes up again, we are eight minutes into the test, and I'm starting to feel funny. I know from past VOMax testing that I shouldn't be happy with lasting anything shorter than 17-18 minutes. I press on. At 140bpm the EKG readout looks like the trace of a conductor's baton during a Wagner opera. I am in V-tach. My heart is thumping on my ribs at 300bpm trying to get out. I go pale and limp and they pull me off the treadmill and onto a table. There is a long period where they run around getting the defibrillator going. I start to get that receeding feeling, like the whole scene is moving away from me down a rabbit hole. Somewhere in the back of my mind I remember what my girfriend's brother told me. A trained paramedic, he knew of cases where a person can defibrillate (cardiovert is actually a better term) themselves by coughing hard or thumping their chest. As the doctor wheels in the defibrillator I give a hard cough. Five seconds later I resume sinus rhythm. There is a collective sigh of relief. I was in a 250 to 300bpm run of V-tach for over one minute. Now I know what this this is all about.

The V-tach was utterly wierd. It put alot of things in perspective. I realized that at least one of my previous episodes of passing out - three years earlier while riding my bike in France- was a run of V-tach. It felt just like that. But what I didn't understand was why this time, with just eight minutes of mild effort, it came so quickly and so strongly, after having no serious sustained manifestations for so long. Part of me feels that somehow being super fit and diligent about exercise actually helped supress the uglier symptoms of my condition. After all, why, after over one month of totally sedentary living, do I now have an extreme bout of V-tach? There is nothing that I have come across in my research that agrees with this, it is just a speculation.

There is also the possibility that I had myself looked at JUST IN TIME. If I had waited any longer, ignored it and tried to race, I'd be lying in some gutter on the side of the road dead of cardiac arrest.

The treadmill episode dramatically vindicated Dr. Marchlinski's opinion. It's strength and length suprised even him. From then on there were no more doubts.

Precedence and Prescience

2008-04-14T10:52:00.000-07:00

Stive Vermaut, a victim of V-tach. photo ©: Daniel Schamps

Turns out that relative to the general population, there are an uncanny amount of endurance athletes with arrhrythmias, and dangerous right ventricular ones at that. A google search will bring you to myriad studies. Basically, I am almost a textbook case.

Among more well-known cyclists, there are two recent cases, one a happy ending, one not. Tour de France star Bobby Julich, whose particular arrhythmia was actually supraventricular, was cured with radio-frequency ablation. Bobby is now back at the top of his game. Stive Vermaut was not so lucky. Stive quit the sport after his first bouts of V-tach, was cleared to ride again, had another episode, quit for good, and died two years later of cardiac arrest. What isn't clear to me is this: what was the state of his treatment and why did he not get an implantable defibrillator (ICD).

Dr. Marchlinski gave me a three-pronged treatment strategy: radio-frequency ablation, an implantable defibrillator, and a lifetime on low levels of Beta-blockers. Initially it seemed heavy-handed. The only data he had to go on was my copious PVC's and a suspicious series of short runs of ventricular tachycardia during the ride I did with the Holter monitor. There was my previous history of fainting (two times) in odd circumstances, but that ws years ago, and to my mind it didn't all add up.
Nor did it add up to Dr. Larry Chinitz, my second opinion. He was suprised at Marchlinski's aggressive approach and thought further testing should be done. I submited to a cardiac MRI, and another echocardiogram.

Neither test proved any more, or less, conclusive. My mother -a licensed nurse who runs a floor at NYU medical center - was perhaps the most doubtful of all my "consultants". I decided to approach Dr. Marchlinski's treatment one step at a time. I had stopped all exercise, started on the betablockers, and waited for my next test - a treadmill stress test that, I was certain, would clear the air. Despite having been "out of training" for almost a month I was confident in my athleticism, and certain I would ace their little treadmill test.

Somewhere in the back and forth between NYU and the University of Pennsylvania, Dr. Chinitz and Dr. Marchlinski's opinions converged. I still don't know what did it, but Chinitz let me know that he was now in the Marchlinski camp of aggressive action. I shrugged my shoulders and booked my flight.

Mount Doom

2008-04-08T20:29:00.000-07:00

Going backward to go forward. March 1 2008, and I'm standing on the starting line at the Rutgers University season opener for the Eastern Collegiate Cycling Conference. I am in the waning weeks of my thirty-eighth year and just having a number pinned on is an indulgence. I'm a graduate student at the Princeton University School of Architecture; I've spent the bulk of adulthood's first two decades as a slacker itinerant bike racer in Europe and the United States, and I really should be in studio building models.

Four years ago I ostensibly gave up the bike to resume my education and "get a real job", but I stayed in touch with the sport. I coached a team of young riders, using that as an excuse to ride myself. And I occasionally moonlight as a journalist, using that as an excuse for staying a sports fan. And from time to time I sneak some racing when no one is looking. Now, in the Collegiate Conference I race with guys who were busy being born the same year I was busy dropping out of college.

What I know now is that the Rutgers weekend will probably go down as my last bike race ever. As I struggled to keep up in a field that I would have easily been competitive in just a year before, I had no idea that I was flirting with something akin to death. I finished the race weekend inordinately fatigued, and in the following days post-race recuperation was proving hard to come by. My pulse, low and occasionally irregular -as is common with endurance athletes- was all over the map. I sat in a lecture feeling as if my heart was doing pirouettes in my chest. I went down to university health services. They put me on an EKG post-haste. I was having what is known as Premature Ventricular Contractions (PVC)s, a common phenomenon that many people experience. The trouble was that mine were wierd looking, came in extended runs, and had been going on for some time. I was sent to a cardiologist that same day. He was intrigued but not concerned. An echocardiogram gave no further clues. My heart was structurally solid, "an athletes heart" I was told. I expected nothing less.

I was given a Holter monitor to wear for 24hrs. This is a continuous EKG that records all your hearts activities. I was advised to do everything I normally do. So that day I went out for a two hour ride. I hit some of the local hills, making sure I got up into the levels of exertion I would normally reach in a race. I felt odd, like I was bottoming out on the hills, but I seemed to recover normally from the efforts. The next few days I was too busy to ride, which was fortunate because I was feeling better and beginning to think that the whole heart arrhythmia thing was silly. Then I got the call. Stop what you are doing, and go see a certain Dr. Francis Marchlinski at the University of Pennsylvania. My Holter monitor readout was grim.

Dr Marchlinski is a guru in the world of cardiac arrhythmia. Much in demand, the only reason Marchlinski deigned to take my case was because it was interesting to him. At the time I didn't know this and was feeling pretty flippant about the whole thing. I had already missed two days of school, which is alot in the fast-paced curriculum of an architecture masters program. I took another day off and headed down to the University of Pennsylvania hospital. After another EKG and a 45-minute inquisition by an intern, Marchlinski himself appeared. Tall and rangy, he is a wizard-like man in his mid-50s. At once kindly and intense, he seems to get lost in his words as he stares off at some Mount Doom no one else can see. After a few minutes with him one is suprised by the lack of a beard, robe and staff. Marchlinski's assessment was this: I have a serious cardiac anomally that could kill me at any time. Ventricular tachycardia, V-tach. Mount Doom.

There are myriad forms of cardiac arrhythmias, some are dangerous some are not. Simply put, certain arrhythmias are caused by scar tissue that develops in the heart muscle that create electrical signals that override the heart's normal rhythm. The location of the sites is the determining factor in assessing the malignancy of the arrythmia. Ventricular Tachycardia is one of the most dangerous and unpredictable of arrhythmias. Because it originates in the chambers of the heart most critical for sending blood to brain and body V-tach can shut a body down and do irrepairable harm. When treated, there is never absolute certainty that V-tach won't come back.

I left Philidelphia perplexed, bemused and disbelieving. I've always known my heart was a bit wacky, but it was hard to imagine being as healthy and athletic as I was and being so close to a, um, terminal moment. I spent the next week doing research, calling medically inclined friends and relatives. Next... what I found.