Hypertrophic Cardiomyopathy? Sarcoidosis?

Hi everyone, so what I thought was probable Arrythmogenic Right Ventricle Dysplasia (ARVD), after a ton of invasive tests and an MRI which showed I did not meet Task Force Criteria for the disease, after a second opinion by a specialist in ARVD who reviewed all of my records and even my MRI disc, he said it was likely hypertrophic cardiomyopathy (HC) or sarcoidosis but not ARVD!! Thank God I got a second opinion!! Just got that today and sent it to my EP.

Anyways, avid runner, cyclist, female and 39. Recovering from ICD implant, been walking 4-5 miles a day until healed in a few more weeks. Also on sotalol, and I feel like a million bucks!! No side effects!!

Does anyone else have HC? or Sarcoidosis? if so, what are you able to do or not do? Thankfully my disease is not ARVD, because exercise can exacerbate the condition. So now I am dealing with HC or Sarcoidosis. Now I have to research the hell out of these two diseases. I may have to go in for more tests, genetic and biopsy. Docs think I can still run and workout but at a much lower level (no more 10 milers for me!). But I will take some running over nothing.

Thanks for any feedback.

2 Comments

ARVD

by natlat - 2014-06-16 06:06:10

Hi, thanks for your comment. So do you wear a heart rate monitor when you workout? do you have parameters? What about lifting? Any movements I should steer clear from for lead protection? I have started to run, at a much slower pace and lower mileage but it feels good to run 3 or so miles. I am not sure about protective clothing. So you have had ARVD for 7 years!! wow, and still going strong? Thanks for the response.

ARVD

by jouwsty - 2014-06-16 12:06:03

Hey. I am a 41yrs male that had a ICD put in 7yrs ago. I did all the tests for ARVD and did not meet the criteria but I have the building blocks for it (what ever that means). Anyway, I continued my workouts that have been extreme...crossfit and strongman. No worries just an issue with the pacemaker being in the way. Trying to find some shirt protector or type of protector. Any ideas on protective clothing.;

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In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.