In March of 2008 I began treatment for a potentially fatal heart arrhythmia whose cause was unknown. I was fit and healthy, having spent a good part of my adult life as an elite cyclist, much of it racing in Europe.
After 5 years of fence-sitting on the part of my doctors, I have been given a diagnosis of ARVD/C (Arrhythmogenic Right Ventricular Dysplasia / Cardiomyopathy). I lack the known genetic markers for the disease as well as some of the structural changes that accompany ARVD/C, and my condition has shown no indication of being progressive (yet).
There is a growing population of current and former endurance athletes who end up with acquired arrhythmias, and a diagnosis of ARVD/C. But by placing these athletes in the ARVD/C patient population, we are potentially ignoring the very real likelihood of an acquired condition, similar, but different, from ARVD/C.
This blog is written as a resource for athletes with acquired arrhythmias, as well as anyone about to undergo endo or epi-cardial ablation, or the implantation of a ICD. It is also written to help generate some critical mass of interest in support of further research into acquired arrhythmias in endurance athletes and others. Feel free to contact me through the comments page if you have any questions or wish to make a written contribution to this blog.

Saturday, November 19, 2011

Overdue Update

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!


jigeum_jue said...

I have been one of those, who have been wondering how you've been doing. I also have ARVD and an endurance runner, who had to scale down a lot after being diagnosed. I continue to run, but not competitive anymore. I focus a lot on warming up and cooling down to regulate heart rate during the run. I also feel that exercising moderately prevents the weird feeling in my heart. I'm also finding ways to lower heart rate with exercise, healthy eating, and ample amount of sleep. The doseage of Sotalol also helps a lot (I haven't been shocked in almost a year.)

In the past, I would get shocked post-activity or post-exercise usually days after the event. The medication and no more "hard runs" have made life better.

All the best, and keep us posted periodically!

Alexander Miele Bremer said...

Congrats Craig! Glad to hear its been going so well.

Lynn said...


I suspect your reaction to this article is much the same as mine.


Justin.stephen said...

I'm 32 with v-tach, an ICD and EF of 40%. I still ride my bike and occasionally run but I'm quite far from where I used to be. 9 months ago I awoke in the night to chest pain and a racing heart and passed out moments later. My next memory is an ambulance ride into the hospital.

My condition like yours is in that broad category of idiopathic.

I've never read you mention anything about the cardiomyopathy side, what was your EF when this all started for you? What is your EF now?

It's been 9 months so far and I feel like I'm plateauing here at 40%. It's an improvement over the 30% I was at but I'm still disappointed.

c2 said...

Hi Justin,
My EF was in the high 40s at its worst, but went up into the 60s after my ablations. I still have "regurgitation" which I think makes things a bit less efficient. I haven't had any tests in 2 years, so I'm not sure where my EF is now. Good luck and thanks for reading!

Keith said...

Hi Craig, really glad I found this as the last 2 years have been pretty difficult. I'm 46 and was in excellent health until 2010, when I was diagnosed with cardiomyopathy after an annual exam revealed some PVCs. I was put on medication and went about my life as normal, not paying much attention to it because I was not experiencing any symptoms. In March of 2011, I collapsed of VT. Because of the syncope, the hospital mandated a PET scan which revealed lesions in numerous organs including my heart and skull. Initial thoughts were cancer but ruled out after skull and lung biopsies. I had a cardiac MRI which revealed the root of the scarring-sarcoidosis of which relatively little is known thus is difficult to treat. I was sent home with a life vest to be monitored and awoke one morning with my wife screaming at me to wake up after I'd been shocked 2x. I was admitted to the hospital and scheduled for an ICD to be implanted the next day. They removed the life vest to monitor me and I went into serious VT an hour later, needing to be paddled numerous times and finally pulled through. I spent the night in ICU and had the ICD implanted the next day. Over the course of the next 2 weeks I was shocked 3x and spent another 6 days in the hospital. That's 22 and counting. My meds were adjusted and I was ok for a while. That fall I went to the Cleveland Clinic for ablation but it was aborted b/c my blood pressure dropped dangerously low. I was fine for nearly a year after that but have had a rough last 6 months with lots of VTs, being shocked twice and my EF has dropped to 26. Doctors have waited to attempt another ablation because they feel the success rate would be lowered if the sarcoid is unstable and is continuing its scarring. This week I've been cleared by my pulmonologist and just returned from Mayo Jacksonville from a 2nd opinion. I'm now waiting to be scheduled for double (endo/epicardial) ablation from a doctor at the Mayo in Minnesota.

The silver lining is that I've felt pretty well through most of this.

I know I haven't contributed much other than my story and apologize for the long post. My intention was not to drone on about my sad story but rather to share it for therapeutic reasons because as we all know, no one can really understand who has not been through this.

Craig, again very glad I stumbled upon this and thank you for this forum. Stay healthy.

c2 said...

HI Keith,
Thanks for sharing your story, apologies for not posting it sooner. I rarely check this blog these days, definitely need to update soon. Sarcoidosis is one of those awful diagnosis that I was worried about early on in my adventures. I hope you beat it. Best of luck and please feel free to send updates in your progress.

simplify50 said...

Thank you! This has been a big help to my 25 year-old son and me. He just had his second ablation two days ago. The doctor was not able to fix him, so he is being referred to an Austin, Texas, doc for an epicardial procedure. We are hungry for more information about all this! Your blog informed and mirrored my son's experience in many ways thus far. We appreciate your story. Glad you are doing well.

stefan glaser said...

Hi craig, found your blog just 2 days ago, and so happy that there is someone with exactly my story, as doctors did not believe me for over a year a 3 day ecg show massive v tachs(but i felt o.k. in this cycle-rides, had much worser days :-)) funny also only at my night cycle back home froim work, never in the morning.. it folowed by mri, whoch showd a minor scar (maybe frm a minor heart attache, i dont know of) whoch they want to ablat via subtrate ablation now... also showd bradycardie in the 30´s at nigjht, but 100% pump funtion... very strange.... stefan from germany