Welcome

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, January 10, 2009

Extreme Cardiac Rehab




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

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

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

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

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

11 comments:

Colby said...

Craig, sounds like your still at it! I've been following your blog for the last couple months now and am fascinated at what they've put you through. I imagined you might be all through, but I guess the Docs have gotta check out their work.

Me, I'm a young seemingly healthy thirty year old who had a minor debacle this spring. Just a sudden cardiac arrest, three laps into a short track mountain bike race out here in Portland, Oregon. I was in third place only five seconds back from the leaders, pretty good, until my heart stopped working. I went into Ventricular Fibrillation, and that was that. I happened to collapse right as we passed through the Start / Finish area, so thankfully first aid volunteers were on hand immediately to administer about ten minutes of excellent CPR before an ambulance arrived and defibrillated me back to life.

Anyways, after getting a defibrillator installed I explained I had always had a racing heart rate, just on occasion, something I had always ignored. My Doctor, Dr. McAnulty looked around in my heart but couldn't find any abnormalities. So I went along my merry old way.

A couple months later I had felt a racing heart a couple of times, I had been exercising moderately and the defibrillator had detected a couple small V-tachs. Then one day I inhaled some marijuana, Oops!! The last time I do that, my heart immediately went into v-tach and I got Zapped at 220 beats a minute. Yikes...

So they put me on beta-blockers and while out hiking two weeks later up at Mount Hood I had about four different intervals of V-tach. I felt hopelessly trapped in my own body, ran out of water, and walked a two hour death march alone back to my car. I was so afraid to get shocked again. That night I called my doctor and a week and a half later I was scheduled for an ablation.

This time Dr. McAnulty used adrenalin and my heart went right into the bad rhythm. And then he got rid of it. It's been three months now and for the first two months I did squat, to scared. But just the last two and a half weeks I've been up to Mount Hood to do some cross-country skiing. I thought,"I've gotta test this thing out before I go back and see the Doc."

I've gone up five times now, skiing your heart jumps pretty high, pretty quickly. After an hour or so it's hard for me to keep it below 160, and up hills it jumps up to 170-175. Anyways, I just went to the Docs the other day and I've had no V-tach since the ablation. It's exciting, I as well am beginning to feel back to normal.

It seems like your Doctors are a little more intense about your testing. I think Dr. McAnulty is just pretty happy to tell me to do whatever I want, and hopefully things will get back to normal. I don't really feel like I need to continue racing. I was quiet the adrenalin junky before all this happened, but now I just want to be able to walk into the mountains for a couple days, or go on a long bike tour, just slow and steady. I'll lose the speed but continue to explore and be happy with that.

Good luck, thanks for all the info, I hope your recovery continues to go smoothly.

Colby Brooks

c2 said...

Hey Colby,
Thanks for sharing your story. Keep me posted if there are any developments, it sounds like your condition is similar to mine, not completely ARVC, but similar. My big fear right now is deterioration, but so far everything has been great and I've been 100% off beta blockers since late December.
Good luck
cc

Alexander Miele Bremer said...

craig! thanks for the update, glad you're doing so well.

btw, i miss the witty thing about the warranty expiring and too many miles under the hood... the Vtach graph is nice though.

RatherBeBiking said...

Craig! I heard a rumor that you were in DC riding the same weekend I was, and that you're going back to DC for lots of riding with Ian and I at the end of the month. Is it true?

- L

mikelikehikebike said...

Hi,

My name is Michael McCalla and I'm a pro mountain biker. I'm having an ablation Tuesday from the same Dr. Marchlinski for v-tach and pvcs and I would like to talk with you before I go 3/4 of the way across the country. I can't believe there your blog addresses the exact problems that I'm having, maybe its not so uncommon...

c2 said...
This comment has been removed by the author.
skydivamegan said...

Hi Craig,
My name is Megan and I am 30 years old. I was born with what we believe to be concealed Wolff-Parkinson-White Syndrome. I've been very well controlled with meds for many years until I recently starting breaking through the meds with new symptoms. After wearing a 21 day event monitor, my Cardiologist believes I'm having V Tach. I'm scheduled for an EP study on St. Patrick's Day and becuase I have a family history of sudden cardiac death, he is recommending an ICD. He tells me that if he gets V Tach that he can't ablate or if he can't induce the V Tach at all, he'll assume its still there and he will go on with the ICD placement. The only way I'll be leaving the OR on March 17 without "extra components" is if the dysrthymia is, in fact, SVT with abberency which can sometimes very closely mimic V Tach on an ECG. He says he really doesn't think this will be the case but he wanted to give my heart the opportunity to prove him wrong in the OR before installing my new hardware.
At any rate, while I was doing a little "Googleing" on ICD's and V Tach, I happened upon your blog. I wanted to let you know how very much I've enjoyed reading your story. The wonderful humor and dry wit you infuse into this situation is most endearing. I'm not an endurance athlete, but I am a very active girl. I skydive, rock climb and race cars. I am also an Emergency Room nurse. The thought of having to give up the things that I enjoy so much has been difficult for me to accept but the thought that someone, somewhere understands how that feels is so very comforting to me. Thank you so much for sharing your story with the world so people like me can benifit from knowing that others understand. I can't wait to read your next update and to hear how you're doing now that you've had your ICD for a while.
As a side note---I'll be participating in my local American Heart Association heart walk on April 4 to commemorate this milestone in my journey and I've raised almost $1000 in donations from friends and family just by spreading the word. I've told lots of them about you and your story.
Thanks again,
Megan
If anyone is interested, my American Heart Association page link is found below.
http://capitalareaheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=279375&supId=248789186

skydivamegan said...

Okay so my AHA link didn't work and won't hyperlink for some reason. Lets try this again. If you're interested in seeing the page, I'm afraid you'll have to copy/paste the web address in the browser window. My appologies and here it is again.

http://capitalareaheartwalk
.kintera.org/faf/donorReg/
donorPledge.asp?ievent=279375
&supld=248789186

I wish they could've given a more complicated web address. That one was just WAY too easy :)

c2 said...

Hi Megan, thanks for your comments! I'm glad the blog can help in some way. Good luck with your treatment. As an ER nurse I'm sure you've seen a lot and know all the various and confusing forms heart conditions can take. I hope you can avoid the ICD. I will update soon, but briefly, I'm finding the ICD to be miraculously untroubling. I haven't had any shocks and have been very active and I've read of a rock climber or two with ICDs, but no skydivers yet! I'm sure they are out there though!

Tammy said...

My 14-year old son was diagnosed in October 2009. He is having a defibrillator implantation in December. He is an athlete. He has always wrestled (since 5) and played football. His heart has been affected on both the right and left side. How do I help him adjust to this? He has been told only light to moderate activity. It would be really nice if you or someone else with arvd could contact him or talk to him. He feels fine, so therefore, he feels invincible...he really wants to continue sports. How are you doing it without causing more damage?

c2 said...

Hi Tammy,
I'm sorry to hear about your son's troubles. It sounds as though he has genetic ARVD and is already having fibro-fatty replacement, if they are saying his left ventricle is affected too. I have a genetically-negative, acquired form of ARVD from a combination of viral attack and endurance sports competition. I have a distinct area of scar that probably won't progress. So my condition is a bit different although the symptoms are similar. In other words my risk of progressive heart degradation if I continue to exercise is low to zero. Your son, however, probably has progressive genetic ARVD. I'm guessing here by what you said. You should definitely make sure this is the case and have the genetic testing done, my suspicion is that because of his age and the fact that both ventricles are affected that this is the case.
Either way it is not the defibrillator that restricts activity (apart from impact sports that could damage the device such as football) as much as the underlying heart condition. There is an excellent yahoo group at http://www.arvd-arvc-info.com/
if you haven't already found it. There are many families like yours that are on the group.
Good luck to you and your son. The ICD implant is really not bad at all once you get used to it. I never think about mine. Make sure they do it subpectorally!
Best
Craig