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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (989)Comment receiving replies
Hello my name is Brandon, I am 42 years old and I am from Minnesota. I was diagnosed with HCM in 2014, open heart surgery in 2016 at the age of 33. Last month I found out I am right on the edge of being too far gone for Camzyos so they are trying to get me on it as soon as possible to hopefully put off another open heart for several years.
Replies to "Hello my name is Brandon, I am 42 years old and I am from Minnesota. I..."
Hi Brandon @mnsportsmanjr, and welcome to Mayo Clinic Connect!
I'm glad you are here and able to share your story with others. Dr Dearani was part of my surgical team as well, and he is considered one of the best in world for septal myectomies.
You are in Minnesota, so I am assuming (which we know what that means!) that you are part of the Hypertrophic Cardiomyopathy clinic at Mayo?
What do you mean you are "right on the edge of being too far gone for Camzyos?" Has your HCM returned or is something else going on with your heart? Forty-two is a youngster, you want to take care of yourself as best you can...
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That sounds worse than it may be. A lot of people have been on Camzyos in this group for years. It lists some possible bad side affects but that don’t mean you’ll have any of them. My husband has been on it for a week, he only feels a little shortness of breath and tiredness. He’s going to switch to taking it at night and see if that’s better. At your age I would suggest you go to a Mayo Clinic and talk to a HCM specialist. Find a doctor there that can do HCM surgery laparoscopic or ASA through the wrist. Where there’s a will there’s a way! Praying you find all the answers you need and be healed.