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.

Wednesday, September 11, 2013

Normally abnormal.

Athlete's Heart vs. Cardiomyopathy, from http://impruvism.com/athletes-heart-1/

The image above is about my heart, ARVC and the results of a recent round of testing, including an MRI. But let's skip to the part where I get an MRI with metal hardware in my chest that basically controls my destiny. This has got to be lowest-common-denominator interesting because MRI techies would have you believe that any metal you happen to absent-minded meander with into an MRI tube  is going to be ripped off - if not through - your body in some cinematic manner. Apparently this is not the case.

"It's not really about the MRI pulling things around in your body" the electrophysiology fellow who was prepping me for my test told me..."its more about the heat."

This was not the answer I was expecting, nor was it reassuring.

"We try to keep the ICD from heating up inside of you."

So, the magnetic field of the MRI heats metal. Those of you with an ICD know that the unit functions with "leads" - metal wires that are embedded in the heart that detect heart rhythm and deliver pacing, and eventually the shock, should it be needed. One can imagine an unpleasant scenario the medical journals refer to as"radiofrequency-related myocardial thermal damage ".

This did not happen to me. The MRI went according to the book. The tube was claustrophobic, I was nervous, but it all worked out. I prefer to keep my eyes shut once the donut has swallowed me. Knowing I have no ability to move is not such a big deal when I can't see the closeness of the machine. 

After the first half-hour or so I started to enjoy myself. There is a hell of a lot of breath-holding with a cardiac MRI. Apparently this is key to getting good images. I was an easy patient and my case was almost boring, as evidenced by the EP fellow playing Angry Birds as I was wheeled through the control room when it was over.

The results, I would learn later, were pretty encouraging. As a reminder, the MRI was performed to determine if my bout with mycarditis a few months earlier had any lasting effects on my heart. It was also done to see if there had been any degradation to my heart, 5 years after my previous ablations and ICD implant. ARVC is a "progressive" disease that is thought to be negatively affected by exercise. By my estimation I've ridden my bike around 30,000 miles since recovering from my ablations in 2008. In 2009, determined to see if I could get back to a prior level of fitness, I did several bike races on my long-disused "Category 2" USAC license. Since then I've been riding as much as I wish as fast as I wish. Which is not particularly much or fast - but still mostly in the 75 to 95% of max heart-rate zones.
All highly ill-advised by the ARVC specialists.

My MRI showed that my heart was unchanged since my first MRI in 2008. In fact, one particular metric had improved - my Right Ventricle End Diastolic Volume had reduced slightly. This is important because right ventricle enlargement is a major symptom of ARVC, though it was by no means showing that my condition was reversing, either.

The end result was that I am exactly where I was in 2008, heart health and fitness-wise. My heart is a bit more enlarged than a typical athlete's heart, but no more so than before. If ARVC is a progressive disease, I am not progressing. More about what this may or may not mean in a future post...


stefan glaser said...

Hi, i just found your blog two days ago and read it to the end.. i am so happy to find it, and, sorry for that, it was sometimes funny for me to read: Well done: but especially because there is someone experiencing exactly the same thing i am experiencing for one year now.. and no docor ever listened.. am also a triathlete,cyclist, 44 years old, and finally they fond via a 3 days ekg(where i felt quiet good cycling, no big problems) major v tachs(up to 240 bpm) salves of extrasystoles and they told mo to immediately come by for an mri: there they found a minor scar (maybe from a minor heartattach, i dont know of).. they say this scar makes the problems.. exactly like yours: could do a triathlon with 170 bpm for 5 hours, the next day i cant even cycle with a 100 bpm because of this heart-things... but worst is the from time to time strange feelings at night, which dont let you fall a sleep(i also thought tehy are food/drink related, especially after red whine, or heavy eating at night) now the want me to do substrat ablation.. they say chance is 70 - 80 % no medication up so far.. bpm at night below 40.... keep me updated how youre feeeling! the best Stefan

stefan glaser said...

Hello together, i just wanted to let you know, that i have had my ablation 2 days ago. I am already back home. It took around 3 hours and i have been under anesthesia most of the time, at the end they woke me up with a bpm of 130 what was freaking, i had extrasystoles coming down, so they ablated a area in the right ventricel, and then it was good, also ablated a part in the left vent. Afterwards i had some chest pain, but it was good the next day, my 24 hour ekg the day after showed only 38 extrasystoles.. They say i have to wait around 3 month to judge the resukt, but they are very confident, that it is fixed. I feeel very good!

Shawn Rosenthal said...
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Shawn Rosenthal said...
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Anonymous said...

Hi Craig -- have you been following the S-ICD technology (subcutaneous)? Removes the risk of vascular placed leads for young patients with good life expectancies. Vascular lead failure within 15 years of placement is high. S-ICD reduces infection risks, and allows contact sports and weight lifting. Current drawbacks include no ATP option. I'm thinking of switch from TV-ICD to S-ICD. Your opinion?

EP in SO said...

Question for you, or who ever else may have input. I just received my 5th ICD over a 16 year period. The first three devices were implanted subpectoral. The last two were not. I received the latest device about four weeks ago. I had just had a replacement two years ago. I needed another replacement because the lead fractured. I got shocked inappropriately while running, knocked me to the ground, ruined my favorite running tights. The EPs are blaming the fracture on push-ups. While I do supplement my running with some core work, I doubt I did enough push-ups or any other upper body work in the last two years to account for the lead fracture. What type of upper body work have your docs given you an ok, or at least a proceed with caution?

Anonymous said...

I am waiting for my 4th ablation this Wednesday. I had an epicardial ablation on June 30 that worked up until 2 days ago when my v-tach came back. The epicardial ablation I had on June 30th lasted 7 hours. It was very painful I was discharged 2 days later. It took me a week at home to get back on my feet. I am 61 and train for half marathons or at least I did. Even though the epicardial ablation is painful it is worth going through to get rid of the v-tach

Danyelle'sworld said...

Hi Craig. My name is Jason. I have been reading your blogs periodically since you started it. It is an awesome blog with a wealth of info. I had a congenital bicuspid aortic valve replaced with a St. Jude mechanical valve when I was 16 years old. I had Wolfe Parkinsons White Syndrome also with multiple ablations to eradicate all pathways. I had one that was not fixed. Fast forward to 2006. I started having multiple episodes of SVT daily. I went to see a local electrophysiologist Patrick Welch. When attempting to induce SVT he actually induced VTACH. He ablated the SVT and it is gone. I spontaneously went into Vfib from Vtach and was defribrillated. Even more concerning, I went straight into VFIB with relatively unagressive burst pacing. I do not understand that at all. If my heart is as strong as they say, why do I go into VTACH with moderate exercise. I have an ICD and have been zapped out of vtach with a rate of 240 three times since that ablation. The episodes always happen during a workout. I am not an elite athlete. I do p90x and weights. My EF is and always has been over 55%. My EP even stated he as no idea why those events unfolded the way they did. He said he couldn't find any scar at all and called it idiopatic VT. That was the last EP study I had and I want to do another one but I am fearful I may go into a rythum he can not convert. I am happily married father of four beautiful children who need me. I have wanted to ask you so many questions but always talked my self out of posting. This time I didn't. Is there any chance we can correspond via email periodically. If so my email is DJDUPRE2301@GMAIL.COM. Thanks for your time a writing this blog for the benefit of others. I will look forward to hearing from you.

Jason Dupre said...

Hi Craig.. I have been following your blog since you started it. I am going to have another VTACH ablation and am extremely anxious about it. It would would mean the world to me to correspond with you through email to ask some specific questions to help ease my anxiety. I am a father of 4 beautiful little ones and married to a wonderful woman of 14 years. There is a lot riding on my safety. My email s djdupre2301@gmail.com. It would mean the world to me and my family. I hope to hear from you. Thank you so much.

Natasha said...

HI, my name is Natasha, 40 year old athlete. Competitive runner. I fainted during a run, then 4 weeks later suffered sustained vtach (hr 260 bpm). Docs could not find the cause after all sorts of tests. I was misdiagnosed as having ARVD, but then they retracted it because I do not have the markers. I now have an ICD (was implanted April 2014) and put on medications. I continue to run but not at the high level I was used to. I run with a HRM and the beta blockers seem to sap my endurance and strength, but I love to run so push through it even if I am slower. No shocks for a year and docs now say I can come off the meds...I am afraid...but do not want to be on meds my whole life. Curious if others are on meds, and how you are doing? Back up cycling? shocks? Hope to hear from you!