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

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@starbuck41

Hey y’all,
Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As all eyes of the VA are on me and my Dr, I’m hoping for much success for me and those that follow. I’ll post every few days and update all effects and effectiveness. I currently reside in Colorado altitude is 6700 ft.

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Replies to "Hey y’all, Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As..."

Hey @starbuck41, thanks for sharing your information here. I'd like to thank you for your service to our Country as well. The VA is an interesting institution in what they chose to support or not support. My dad was a WWII veteran, serving on a mine sweeper during the war. I had many encounters with the VA taking him to our little center for all sorts of things. I hope the best for you beginning this new drug. Following some of the other folks here it sounds very promising. It takes courage to try a new drug not knowing how it may affect you. It sounds like from the others on here there is a little transition in the beginning. High elevation is very hard on HCM people, so there is that too. The drug was not approved yet when I had my surgery, but I can tell you this...I would have liked to have had a chance to at least to try it. I can also tell you that nobody, no, not one person, would want to have open heart surgery, but if your choice comes down to surgery or living half of a life because of HCM, choosing surgery is the best choice. I had the best care on the planet at the Mayo Clinic in Rochester. I'm only mentioning that because should the Camzyos end up not being your friend, not to fear surgery. Have the VA doctors got a plan for close follow up? You mention that all eyes of the VA are on you and your doctor, will they be following your doctors recommendations?

Yay! That is great news! I will be anxious to hear! Hopefully it will act quickly for you as it did for me and some of the other people in this group! So exciting! 🙂

I lived around 8500 ft. In elevation in Colorado and didn’t have any issues with the elevation. I have non-ischemic cardiomyopathy with a full block and am on several meds, obviously. Hopefully your new meds work and you can enjoy those outstanding mountains! Keep fighting the good fight…