Quick Update for the ARVD Crowd + the 1st Video Made in USA

After a backlog of comments from people with ARVD or heart rhythm issues, I decided it was time to post an update and answer a few of the questions regarding ICDs, ARVD, and heart rhythm.

I’ll start with the ICD. So far, it’s never shocked me which is a very good thing (I hear it’s not the most pleasant experience). Twice it has paced my heart. Both times occurred in the winter when I had a fever. I was a bit frustrated by all the maladies I was struck with this winter (I’m typically the guy that never gets sick) but thankfully my GP reassured me that it’s a common occurrence when a parent enters the Wonderful World of Daycare Microbes. He reassured me that he’s never been more under-the-weather than when his child was between 6 months and 2 years… which is telling for a guy who’s ground-zero for the majority of common health problems. I did feel the 2 minor pacings, as they were subdued versions of the arrythmias I knew too well in years prior – and even those stronger episodes self-terminated without vagal maneuvers or drugs. Sometimes I would have 20-30 per day. Having the ICD on-board delegates this task and if it’s particularly subburn or stouthearted, it can administer a shock to ameliorate the arrythmia. With two minor episodes during sickness, neither myself nor my cardiologist is too concerned with the isolated misfires.

Outside of the aforementioned 20 seconds, the 1st year with the ICD has been very good as it generally doesn’t get used. Even harmless little PVC’s have died down the more removed from the operating room I get. I tried to remain active during the winter (which also seems to help with PVCs) but the infection I picked up in January sidelined things for a bit only to be followed by another (or the same) virus in late March which lead to an inner-ear infection that lasted 6 weeks. The inner-ear infection was more difficult to recover from than any heart surgery I’ve experienced. Nasty thing. Don’t try it.

I also got a question about genetic testing for ARVD. It’s one of the first things that gets tested when trying to diagnose ARVD (along with a cardiac MRI, EKG, stress test, review of family history, etc). If I remember correctly, the test looks for 7 genetic sequences that are thought to be associated with ARVD. Mine came back negative, the cardiac MRI looks good, the EKG looks great, the stress test lasted 21 minutes (new course record at that particular establishment), and family history is negative. But the good folks at John’s Hopkins didn’t want to give up that easy. They ordered a massive DNA scan that searched for not 7, but 256 (if I remember correctly) different sequences to see if there was anything, anywhere in my DNA that could cause a heart problem. If the 7 sequence test is a stethoscope to the chest, the 256 sequence test pulls your pants down for the medical world to see. The test found very little and the only mutation they discovered is a very common and minor mutation that is not associated with ARVD. Excellent news. The test took about 4-5 months and cost about $12,000 but they did ensure that it would be covered by insurance prior to running the test (otherwise I probably won’t have bothered).

I’ve finally recovered from the winter and spring maladies and can now cycle until my legs turn to jello (thanks to taking 6 weeks off). But the fundamental take-away is that my limiter is my legs, not my heart. I did a ‘cycling event’ in April. I won’t call it a ‘race’ because it was during my infection period where I wasn’t feeling great but some antibiotics gave me the hope that I could have a fun weekend – and that it was. To my amazement, after 14 years since my last race, I was still in the same age group! Probably the last thing you want to see after taking more than a decade off from racing while also under the influence of antibiotics, and a cool new ICD… is too look to your right and left and see kids in college uniforms. I think I would have done better if it were not for the illness, but I played the game for as long as I could given the circumstances. It was one of my worst rides of the year (based on power output) but for about 1hr 40 minutes, I was right up there with college kids and racer-heads. The pace was off the charts, especially for the first 100 minutes. Ultimately, my body decided to reward itself for the good work it had put in and finally let go. I finished the final 100 minutes riding solo at a more leisurely pace. At the finish, they took a photo of the top 3 on the podium but the third place finisher was missing. The second-place finisher alluded to the intensity of the day when he posted on instagram, “3rd Place May Be Dead”

Leading the charge up the climb

And for those interested, there’s a video from my helmet (1080p available) that goes along with it:
Fitness is finally improving albeit slowly. Hopefully with my heart not being a day-to-day issue, I can switch gears and crank out more bicycling related content on this blog… when I’m not pounding the pavement, slaving at work, changing diapers, or cleaning up. Baby is now running around everywhere and even with a vocabulary of only 5 words, her favorite saying is “Go, Go, Go” as she sprints aimlessly around the house. So now you know my training regimen and judging from what I’ve seen, I’ll soon be getting dropped on family bike rides.

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5 Responses to Quick Update for the ARVD Crowd + the 1st Video Made in USA

  1. Leonie says:

    Hi there, I’ve read a few of your notes and this last one sounds like you don’t have genetic-ARVD; so I’m presuming you have the exercised-induced version? If so, I’m surprised you are allowed to participate in the bike event? What’s your doctors take on that?
    I’m in the same boat, I don’t meet the Task Force criteria for inherited ARVC, but appear to have ridden my bike so hard, I’ve damaged my heart and also have an ICD. I’ve been told I can do *some* exercise but nothing *extreme*. I’m keen to know your impression on ‘what’s too much’.

  2. Natasha Latona says:

    While I do not ride, I run. I have an arrhythmia as well and an ICD. Idiopathic VT is my diagnosis. I take a low dose of sotalol 40 mg and don’t push as hard as I used to, but I am out there and building my mileage. Wayward are you on medication?

  3. thewaywardcyclist says:

    No. Since July 2013 my heart beats just like it should. Medication that slows down my already slow resting heart rate of 38bpm probably isn’t beneficial at this point.

  4. Natasha Latona says:

    I actually was misdiagnosed and do not have ARVD. I went to many doctors (top) and they all cannot figure out why I have a scar in my heart that was causing abnormal rhythms. My EKG remains abnormal. I just had a very successful ablation 8 weeks ago and my medication was reduced and then I am now off meds. I hope to remain symptom free and be able to run again. It is scary because I do not want my ICD to go off nor experience fainting again, but I would rather be off meds. If it were not for the successful ablation, I would never have this opportunity. I still remain undiagnosed. I hope you updated us about how you are doing. Thanks!

  5. Kevin Cameron says:

    Hi Wayward. Your journey seems to parallel many people including mine. I won’t bore you with all the details but in summary. I am (was) a high level cyclist for 35 years who always rode hard. High school done, college done, Husband, father, kids and professional career, not a pro cyclist but I continued to ride. I became aware in September 2015 with a visit to my cardiologist that an EKG read AFIB. Since than I have had ECG,Cardioversion, cardioversion, cardio cathedar ablation, cardiac arrest, AICD implanted, cardiac MRI and finally a last cardio cathedar ablation. Plus I have been taking anti-arythmic and beta blocker meds. From the last ablation my EP says he has mapped VTACH to the outside of the heart. He is referring me to Johns Hopkins. I am hopeful that your progress continues to be good since July 2015 and was wondering if you could post some update a year after epicardial ablation.. I am desperate for a normal quality of life but at the same time scared should an epicardial ablation procedure be recommended. My current condition has me with a good resting heart rate AICD controlled 60. I used to have resting HR below 50. When at rest since AICD implanted I am often at 60. But HR it quickly moves into the tachycardia zone with very little movement. For example walking from my couch to the refrigerator is enough to trigger high heart. I feel it in my chest. A tightness develops. My chest has the pressure in it. It feels like it is growing. My rate of respiration increases, aka shortness of breath.

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