Update Part 2 – Atrial Fibrillation, Pradaxa Fail, Transient Ischemic Episode, Blood Clot in Left Atrial Appendage

Jimi Hendrix sang, “manic depression’s a frustrating mess.” Well, I think the same can be said of atrial fibrillation!

mountainbikingwringoRingo and Me – Photo by Ben Vallejos

It’s been a while since I have written and I have to say the last couple of months have been nerve-wracking. As I posted in a previous entry I had a TIA (transient ischemic attack) while running a couple of months ago, had a normal carotid scan, but a TEE (trans-esophageal echocardiogram) showed that I had a small blood clot in my left atrial appendage.

In other words I had a “mini-stroke” and was at risk of having a full on stroke.

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This TIA occurred while I was on Pradaxa, a newer, novel anticoagulant. At that point I was taken off Pradaxa, started on Lovenox (low molecular weight heparin) injections, and warfarin (Coumadin), and also aspirin. I was instructed to discontinue running, and bicycling, and limit my activity to easy walks, and a repeat TEE was scheduled two months after the initial one.

I won’t hold back any longer regarding the surprise ending – I never had a second TIA “mini-stroke” (that I know of) or stroke and the follow-up TEE (trans-esophageal echocardiogram) showed that the blood clot inside my heart is now gone. Hooray!

appendagePhoto – The little cul-de-sac is the LA appendage

Just to review how this happens: when you are in atrial fibrillation your atria is beating so fast it’s like it isn’t beating at all, just sort of vibrating. There is a part of the left atrium (the “appendage”) where the blow flow is extra sluggish, and this is where clots can form. When a tiny piece of clot breaks of and goes into the brain that’s a TIA. If a big clot is present and breaks of into the brain that’s a stroke, which of course can be disabling and even fatal.

It goes without saying that I am disappointed that this occurred while I was on Pradaxa. I figured that as long as I was taking it I was safe, and I liked not having to watch my diet or have blood tests constantly. Taking Pradaxa is easy – “set it and forget it.” Now I’m on warfarin (Coumadin), a royal pain in the butt, and have to micromanage my diet constantly – this drug is not an easy choice for a vegetarian! Eating too many greens (think kale) is dangerous as is not eating enough greens. Imagine trying to eat about the same amount of kale or broccoli or spinach each day.

zaPhoto – vegan pizza

My target INR is between 2.0 and 3.0, but seeing as I have had a TIA while on an anticoagulant I am trying to keep it nearer to 3.0 or even higher (3.0 – 3.5).

The two months between echocardiograms was an era of angst – anxiety and fear – for me, especially the first several weeks. Every symptom, no matter how minor, seemed like stroke. For example – lie in bed trying to get to sleep and your hand becomes numb – normal, right? Not when you know you have a blood clot in your heart – that seems like a stroke! Jump up from bed, start testing the muscle strength in each arm and leg, recite the alphabet, smile, frown, move eyebrows up and down checking for asymmetry. Do you think I’m exaggerating?

Every once in a while a person stammers or mispronounces a word. Normal? Maybe, but not when you are obsessed with a gigantic blood clot lodging in your brain.

As far as exercise was concerned at first I was limiting myself to short, easy walks more appropriate for a non-athlete. Eventually I became a bit bolder and started doing longer (but slow, especially up hills) hikes of an hour or two. It took me three weeks (!) to bridge to a therapeutic INR, so I was on warfarin and Lovenox for all that time. Once I was off the injections I started doing bike rides – but they were on non-technical trails and were slow, especially while going uphill.

My brain never got the memo that I was no longer a long distance runner/cyclist so I still ate like I was, and consequently I’ve gained some weight.

At this point, after finding out the clot is no longer present, I have started increasing the intensity of my bike rides, but mostly I’m still doing bike rides. I haven’t yet started running again – but I will.

I am mountain biking again, but not on any trails that would be considered challenging. Well, that’s not 100% true, I guess.

awol-1-2Photo – “Adventure Without Limits?”

As far as mountain biking is concerned I am phasing out technical trails (gradually). I made a deal with my self that if I didn’t have the blood clot on the second TEE I would get a new bike – and I did. I got a Specialized AWOL, which is a “gravel grinder.” That’s sort of a cross between cyclocross bike and a loaded touring road bike – basically a bike designed for gravel or dirt roads – we have an infinite supply of these around here so I have a lot of exploring ahead of me.

As far as that blood clot is concerned I’m very pleased it has gone away – but I am not fooling myself that it is gone forever. It could return at any time. It wasn’t there when I had my second TEE, but it could actually be there right now – how would I know? How long had it been there and how many times have I had a clot in that area? There’s no telling without doing a ridiculously expensive, somewhat invasive test over and over. I guess all I can do is stay vigilant, take my meds, watch the diet, and keep on trying to run, hike, and ride, even if it is at a reduced level.

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Re A-Fib: 5 Things I’ve Learned in 10 years… A Guest Post by David Grayson Lees

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I’m a 64 year-old road/trail runner, marathoner and weight lifter diagnosed with atrial fibrillation more than a decade ago. I’ve had three ablations and as many cardioversions, plus I’ve swallowed the usual assortment of prescription meds. Now my a-fib has become paroxysmal atrial flutter—about one episode every two weeks or so, usually lasting a few hours—and while my running days seem to be over, I still regularly make it to the gym and I’m discovering the joys of walking and hiking.

Through trial and error—plenty of each, actually—as well as a fair amount of research, I’ve come to a handful of conclusions that may be useful. While I believe them to be true, keep in mind that my observations are true for me; your experience may well be different. Finally, since I’m not a physician, nothing here is intended as medical advice.

And now: 5 things I’ve learned in 10 years of dealing with the always-entertaining world of cardiac arrhythmia.

A-Fib won’t kill you…even though a diagnosis of a-fib—and its symptoms—can be very scary, barring underlying cardiac disease, a-fib is not inherently life-threatening. And so if you have just been diagnosed, relax as best you can.

…but a stroke could. Pay rigorous attention to your anti-coagulation regimen. Even if your CHAD score is zero, at least take a low-dose aspirin every day. Personally, I find Coumadin to be a true pain, what with blood monitoring, dietary restrictions and the like. I much prefer the newer meds, especially Xarelto. It acts quickly, and as an added bonus you don’t have to be continuously concerned with your INR numbers.

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Your EP isn’t interested in prevention. Typically, EP’s are all about fixing stuff rather than prevention. Which is weird, because unless you’re on the younger side of 40 and/or your a-fib has been freshly discovered, one ablation usually won’t do the trick. Of course, I’m grateful to my two EP’s, one rated among the best in California and the other acknowledged as one of the best in the world. It’s just that neither one has ever expressed any interest in the contours of my life, including what my exercise habits happen to be, what sorts of supplements I take, or what my days are like. Now, I’m not looking for a new best friend, but it’s clear that for them I’m a unique problem to be solved rather than a unique human being. I’m not angry about it; after all, these docs chose a field in which their major interaction with patients occurs when the patient is unconscious.

Still, I believe the implication is clear: you are pretty much on your own when it comes to figuring out how to modify your life style, exploring vitamin/mineral supplementation, and gathering the latest non-nutsy information.

(BTW, in terms of info, two websites I recommend are Dr. John Madrola and The A-Fib Report. Dr. John is a younger EP who always has a thought provoking take on new developments in a-f treatment and research and The A-Fib Report is a readable compendium of international a-f research, written in lay language. It requires a nominal membership fee that’s well worth it.)

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Supplementation could work for you. I haven’t thrown out my beta blocker (Sotalol AF, not regular Sotalol) but along the way I have had excellent results in controlling the frequency and duration of my atrial flutter episodes by supplementing with 200 mg of magnesium citrate in a pill taken at lunch and ¼ teaspoon of potassium citrate dissolved in water taken in the morning and again at dinnertime (Please note: ingesting too much potassium involves some quite severe health risks, so be careful.)

Life is good. But first, the bad news: as near as I can tell, nobody knows what causes atrial flutter. The gang of suspects spans endurance sports (!) to mysterious biochemical mechanisms that somehow encourage the formation of tissue substrates that make the electrical system of the heart go haywire. Researchers—and your EP, too–are just guessing, leaning on statistical correlations rather than employing demonstrable causal connections. Maybe cutting out caffeine will help you; maybe it won’t. Maybe abstaining from demon rum will prove to be the answer; maybe not. Obviously, if you are over-drinking, over stressing (like many of us who are into enduro sports) under sleeping or happen to be engaged in other deleterious deeds, changing your behavior is simply a good idea, a-fib or no a-fib. Just don’t expect that any one thing will be the answer.

The good news is, you can have a great life even with a-fib and a-flutter. No, I don’t love my a-flutter episodes; they are annoying and sometimes, even after a decade, still frightening. I don’t run anymore, but a long walk or a moderate—I know, I know, not my favorite word, either—hike turns out to be a lot of fun. No, I can’t put the same hemodynamic load on my heart that I used to, but I can still work up a nice funky sweat underneath the weight machines at the gym.

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Besides, working out is only a part of life. My friendships, relationship with my son, work, and my love life (I’m getting married again, and I’m stoked!) are just as satisfying as ever.

Maybe more so.

Those of us with a-fib or a-flutter aren’t sick, not truly. Nor do we need to afraid.

So—live!

(Thanks to Linda for the inspiration. Thanks to you for reading.)

Atrial Fibrillation, Running, and Beta Blockers Part Two

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The last article I wrote about beta blockers was written last Summer when I was more or less just starting the beta blocker. I had noticed a decrease in performance and exercise tolerance and when I went to the cardiologist and had an echocardiogram it was determined that my rate was going up and my ejection fraction was going down – that means my heart was pumping less efficiently and was pushing out as much blood with each beat. I was put on a low dose of carvedilol (6.25 mg twice daily) and it was thought that this would allow my ejection fraction (EF) to come back up.

When I started my EF was 55%, but when I had the echocardiogram mentioned above it was down to 45%. As noted in my last beta blocker article I suffered on runs and bike rides but felt it was worth it as I anticipated improvement.

When I returned for the follow-up echocardiogram I was extremely disappointed to learn that my EF had actually gone down to 37%. Not good.

At that point I the dosage of my beta blocker (carvedilol) was titrated up from the minimum dosage to the maximum dosage (50mg twice daily).

As you might imagine between the atrial fibrillation, the decrease in EF, and the high dose of beta blocker – running became extremely difficult. All three of these things decrease my cardiac output and, of course, that translates to poor performance. I now found I had slowed to a ludicrous pace, and honestly, running was starting to become a chore.

Running was starting to become unenjoyable; but I continued anyway.

I felt like every run was my first run after not exercising for several years, and I was walking up the most minor hills.

Last week I returned to the Heart Clinic and had yet another echocardiogram. To be honest I haven’t been feeling any better and runs still seem difficult so I decided not to even look at the screen or ask the tech about my EF as I assumed it was still poor. I’d just wait until the follow-up appointment with the cardiologist. But the tech, who knows me by now, just came out and told me – “Well, it looks like your ejection fraction is improving – it’s up to 47%.”

Well, that is good news. At least this suffering through the beta blockers is leading to some benefit.

That was just the preliminary reading, my new cardiologist (my previous cardiologist retired from clinic but still works at our hospital) interpreted the echo and said it was more like 50%!!! That’s nearly back to normal range (52-70%).

One interesting thing the cardiologist told me: she said that one would expect that people who are more athletic would have higher ejection fractions than non-athletes but in reality the opposite is often the case. I told her that my heart is so big that if my ejection fraction was too high there would be too much blood – ha ha.

hot lava

There’s something I don’t understand about echocardiograms and atrial fibrillation – as anybody who is in a fib knows some beats are better than others. It’s easy to feel that – some are short and weak and others are longer and more powerful. How, when looking at the heart with the echo machine, can you tell what kind of beat you are having?

So there is some good news. Runs are still difficult and I don’t see myself ever being completely off of the beta blocker – but hopefully a different dose in the future when my ejection fraction reaches whatever the goal value ends up being.

In my next article on running and beta blockers I will discuss “Beta Blocker Blues” and the way this unpleasant medication makes me feel fatigued and, often, quite depressed. But for now I’ll embrace the joy of knowing my ejection fraction is significantly improving and will likely get even better.

SOB Trail Run 15K Race Report: Atrial Fibrillation, Running, Beta Blockers – My First Impression

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SOB Trail Run

I have been in permanent atrial fibrillation for a couple of years now, but only been taking an anticoagulant (Pradaxa). But things have changed and for the past month I have been on a beta blocker, carvedilol.

Prior to starting the carvedilol, while in permanent atrial fibrillation, I had been able to run two marathons and one ultramarathon (50K) without any more trouble than the normal marathon type suffering, but over the past six months I have noticed things have been changing. I’ve slowed down, even for me, and distances are getting harder. My last half marathon was a joke and I was at the end of the pack within the first two miles. After a run or mountain bike ride of an hour or more I would have problems afterwards – my blood pressure would drop and my pulse would stay high. After a long run, especially if it was a hot day (which they all are, recently) I would get so light-headed after standing up I sometimes had to grip onto something to remain standing.

A visit to the cardiologist, and a subsequent echocardiogram, revealed that my heart rate was increasing and my ejection fraction was decreasing, and for that reason the cardiologist wanted me to start on a beta blocker.

A beta blocker, in this case carvedilol, is a drug that reduces stress on the heart by slowing the heart rate, decreasing the force with which the heart beats, and reduces the tone of the arteries throughout the body. The end result is that blood pressure is reduced, as is heart rate. The heart needn’t work so hard.

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SOB 50 Mile Course – tough!

Some non-endurance athletes actually use beta blockers as performance enhancing drugs – it is said that it calms a person, reduces performance anxiety, and is commonly used in less endurance specific sports such as golf, target shooting, archery, and even in music performance.

Clearly these drugs are performance diminishing for endurance sports like distance running and mountain biking. We like to stress the heart, raise the heart rate, and we don’t have very much stress – we’re long distance runners after all – the mellowest people around.

I generally am in at least half marathon shape year round. Even if I’m not training for anything my weekend long run is going to be between nine and twelve trail miles. Prior to starting the beta blocker I had signed up for the 15K at the SOB Trail Run at Mount Ashland (Oregon) – one of my favorite races. This relatively high altitude run is basically all up and down trails and fire roads (zero flat sections) and I have done it at least six times in the past, including completing it twice in atrial fibrillation. I was curious to see how being on the beta blocker would affect my race.

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DNF

The answer was I DNFed (did not finish) and dropped out fairly early in the race. That was terrible – most of my friends were running the 50K or the 50 mile and I DNFed the little 15K???

The course at the SOB is brilliant, really. A lot of trail races start out right away on singletrack, but the SOB has about a mile(?) of fire road at the start so everybody has plenty of time to figure out whether they are going to be running with the fast people or the slow people before they hit narrow Pacific Crest Trail. I ended up at the very back of the group that was running, but I was still in front of the few people who were walking the 15K.

I found that as soon as the course headed up hill I was unable to run. My chest felt funny – not chest pain, just felt weak, not right, and my legs felt dead. I wasn’t short of breath, I was just unable to do it. I decided, in my typical OCD mode, to continue running for five more songs on my iPod shuffle, and then turn around and drop out, thinking that I should at least get a little bit of a work out in, and that I could justify keeping the T-shirt I had paid extra for. I knew I could have walked the course, but that is not what I went there to do.

I was delighted that the fifth song on my iPod turned out to be an oldie from my high school days: Yours is No Disgrace by Yes. Not actually I song I still like very much, but in this context it seemed like a cosmic pat on the back.

http://youtu.be/Vd4jeeu90Rk
A Cosmic Pat on the Back

On the way back I met a woman who was also DNFing (sprained ankle) and we walked the last section of the race together, commiserated, and removed our numbers so they wouldn’t mistake us for the top finishers. At the finish line we informed the race officials that we had dropped out so they didn’t need to send a search and rescue team to find us.

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DNFing and commiserating together as we remove our race numbers

So this article is, basically, my first impression of being on a beta blocker, in addition to the atrial fibrillation, and trying to remain an endurance athlete.

So far I feel that the beta blocker is more of a hindrance to my running and cycling than the atrial fibrillation alone had been – but then again, because of the atrial fibrillation my heart function is gradually diminishing.

I should say, on a positive note, that the beta blocker is working, and is doing what it is supposed to do. I check my heart rate and blood pressure at least once per day and since I started the carvedilol I am right where the cardiologist wants me to be. And I can understand why people who aren’t trying to be athletes might like the med – it seems to have a mild calming effect. Furthermore I no longer feel like my heart is a fish flopping around in my chest, and my post work out blood pressure and heart rate has stabilized.

I am optimistic that the carvedilol will be worthwhile and will help me preserve and regain my ejection fraction. But really, what choice do I have?

So here is how things have changed so far (compared to just permanent a fib without the beta blocker):

1.) As far as mountain and road biking is concerned I have been able to ride all the hills that I used to be able to ride, although I am much slower. My wife now has to wait for me at the top of a climb, and that’s fine. I am delighted I can still ride and don’t have to get off and walk my bike.

2.) Running is more negatively influenced. My previous slow pace is even worse, and hills are quite difficult. Not surprisingly I do not like this one bit. A slow jog feels like a 5K effort. But I am still able to run – Yay!

3.) Long runs in heat are not possible. I am just not able to do a long run in heat, and lately every day has been warm. Understand that I am a big red-faced Irish-American who considers anything over sixty degrees to be hot running weather; plus I live in a very sunny place, a high desert climate without a lot of shade. It is not surprising that this is happening. A normal person running in heat will have a higher heart rate for a given pace, and will need to slow down. If you are on a beta blocker that reduces the maximum heart rate by a significant amount, well: “game over.”

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My goal is to continue running and mountain biking on trails like this: Brown Mountain Trail

4.) I suspect that the beta blocker might be making me lazy. I don’t know if that is the right word, but I had a full day off in the middle of the week a while ago and I had planned on, among other things, writing this article and going for a trail run, and next thing I knew it was late afternoon and I hadn’t done a thing. What? By that time there was a thunderstorm so I was not going out for a run – but the article still hadn’t been started. I hope this is not going to be the case from now on. Being lazy and depressed is far from my idea of fun.

I am going to wait until I have had more experience with the beta blocker and write a better informed article. I’m going to sign up for a relatively flat (downhill, actually) trail half marathon and try to redeem myself.

In the meantime I would love hear about other people’s experiences with the dreaded beta blockers. Please post a comment below.

Atrial Fibrillation – A Visit to the Electrophysiologist

While at my previous job, at Klamath Family Practice Center, I always had easy access to an EKG. Just for the record, remember that I am a podiatrist, not a family practice physician, but if I wanted to have an EKG done I would just have a tech do one on me. I have had a fairly long history of arrhythmias, including PACs, PVCs, and even runs of paroxysmal supraventricular tachycardia. But one day when I returned from a 20 mile trail run I was in a particularly persistent arrhythmia and I wondered if it was atrial fibrillation. I had the tech do an EKG and my suspicions were confirmed.

At that point I walked down the hall and went to see my primary care doctor, who is also one of my coworkers, and she recommended Pradaxa, gave me some samples, and made an appointment for me to see my local cardiologist, Dr. Dale McDowell.

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At Dr Martin’s Office

Dr. McDowell, with whom I have been a patient for the past twenty years, then examined me, did a stress EKG, told me to continue with the Pradaxa, and advised that I should see an electrophysiologist for consultation.

We have several cardiologists in Klamath Falls, all of whom are excellent, but we don’t have any electrophysiologists. An electrophysiologist is a subspecialty cardiologist who focuses on arrhythmias, and are the ones who performed the ablations, install pacemakers and defibrillators, and so on. I think their most common patient is probably people like me who have atrial fibrillation.

I had an appointment with David Martin, MD of Southern Oregon Cardiology and I will admit that I was extremely nervous about this appointment, because I was afraid that he would tell me I had to quit running and quit mountain biking. Or at the very least he would tell me to quit running marathons and start running 5Ks. I was also afraid that he was going to put me on a performance killing medication such as a beta blocker, or worse, recommend and ablation procedure which could be quite an ordeal.

Like other endurance athletes I often have to deal with people that really don’t understand what it is that we do, and why we do it. That’s one thing if it’s a relative, friend, or an acquaintance – but when it is somebody who is going to formulate a treatment plan that is going to affect the rest of your life, it can be a scary proposition.

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High Lakes Trail

So when I did a Google search on Dr. Martin I honestly wasn’t very interested in where he graduated from, or what he did during his fellowship – I just wanted to try to figure out if he was a runner, bicyclists, or a triathlete. The little blurb about him and the Southern Oregon Cardiology website didn’t mention anything one way or the other, but in his photograph he appeared to be a thin man, and I found that to be encouraging.

I think I even searched local race results looking for his name to no avail.

When I called to make an appointment I asked the receptionist, “Is this guy a runner, or anything like that?” She said that she had no idea.

It took a while before I can get an appointment and in the meantime I had a question. I had spent four or five months training to run an ultramarathon, the Bighorn Mountain Wild and Scenic Trail Run 50K in Wyoming. Even after I was diagnosed with atrial fibrillation I continue to train for this race, which was to be my first 50K. I was getting mixed messages from people as to whether or not I should run it. My primary care physician, who is an ultra runner and has completed a couple of hundred mile races, and who happened to be signed up to run the 50 mile event at the same race, told me to run it. She said it would just take me a little longer – no problem. A friend of mine, with whom I was going to run the race and was also running his first ever 50K, and is a family practice physician in Wyoming, told me to quit complaining and get on the plane to Wyoming for the race. My cardiologist in Klamath Falls, Dr. McDowell, advised me to quit running marathons and not to consider running an ultramarathon. I have a cousin in Chicago who is an electrophysiologist/caridologist and I spoke with him on the phone – he runs marathons and his wife runs ultramarathons. He said I should run it. Another acquaintance, who is a cardiac surgeon, but have never actually examined me, said he thought it might be safe for me to run the 50K, but advised me that it is important that I agreed with my cardiologist (good advice).

If you’re keeping track, so far that is four doctors that said go ahead and run it, and one doctor, who happens to be my cardiologist, and has the biggest vote, that said not to run it. I decided to call Dr. Martin (the electrophysiologist), who would be the tiebreaker, even though I hadn’t been seen by him yet, and ask him about running that 50K.

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High Lakes Trail

I was able to get a message to him through his nurse, and then she called me back and said I shouldn’t run it. So I didn’t run it.

This is unfortunate because I had already paid for it, but when I contacted the race director she told me I would be unable to get a refund, or even a credit for next year’s event. Also, I had already bought an airline ticket Wyoming which is more expensive than you might imagine. I was able to get a partial credit for this.

I didn’t want to waste all that training so I decided to run a marathon that weekend. I found a nearby marathon in Vancouver Washington and ran that while in persistent atrial fibrillation. It was slow, but I survived, and that’s another blog article altogether.

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Vancouver USA Marathon

When I finally got in to see Dr. Martin he examined me, looked over all the EKG’s, the stress test, the chart notes from Dr. McDowell, and the lab work and spent quite a bit of time talking with me.

I’m glad that my wife came along because she wouldn’t believe me if I came home and told her that he told me, “Keep exercising like you don’t have atrial fibrillation.” He then went on to tell me, “in the future you may want to consider some moderation as far as your exercises concerned.”

That seems reasonable enough. In fact I was delighted.

The next thing he said was kind of funny. He said, “People like you are a type – ultra marathoners, triathletes, Ironman competitors . . . and you can be pretty hard on your bodies.”

“People like you are a type . . .” Well . . . that certainly is true.

In addition to clearing me to continue with my running, he advised that I did not need to take an antiarrhythmic, which probably would not be very helpful in my specific case, and didn’t recommend a rate control drug at this point in time. Furthermore, he advised me that he thought I had a low likelihood of having a successful ablation procedure given the severe hypertrophy of my left atrium and the fact that the atrial fibrillation was persistent.

He did recommend that I try cardioversion with a “one strike and you’re out” policy – that is to say it probably would not be any type of permanent solution, but it is certainly worth trying at least once. That seems perfectly reasonable to me and I went back to Dr. McDowell for the cardioversion, and was in sinus rhythm for a total of thirty-three days.

I was so pleased with my visit to see the electrophysiologist, Dr. Martin, that I wrote him a letter afterward thanking him. I hadn’t really expected that kind of empathy.

I would be interested in hearing from other endurance athletes with respect to their medical care, and how they perceived the way they were treated by their cardiologists and electrophysiologists. Please feel free to leave a comment.