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DiscussionAnyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 days ago | Replies (807)Comment receiving replies
Replies to "Did the heart surgery improve/ remove your symptoms? How long ago was it and are the..."
Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?