← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@karukgirl

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?

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Replies to "Hi @andyherman3, thanks for asking. 100% yes the surgery worked for me. I take only a..."

Perfect sense! Thank you so much for sharing your story. I just turned 65 and was very active before progression of my HCM. If Camzyos doesn’t give me significant relief, surgery would be my next step (if I’m brave enough like you). ❤️ hopefully your results will last a lifetime.

Thank you for sharing this. I was recommended to have surgery 6 months ago and out of fear have not. I have been declining. This is a happy ending story that gives me courage some are glad to have done the surgery. I am hoping to be brave enough to do it.