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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (736)Comment receiving replies
Hi @karukgirl, thanks for the welcome. I'm in a small Alberta town 450 miles straight north of Yellowstone National Park. It's funny you ask about what concerns I have. After chasing one false lead after the next, getting my hopes raised then dashed for 17 years - my biggest concern is just going through that cycle again. Maybe I should be more worried about the heart failure business but it seems to me I've been living with a form of untreated heart failure all this time anyway, and now I'll be under a microscope. Not sure how up to date my cardiologist is on HCM but he is very attentive and responsive and I feel quite confident in him. I think I'm his first Camzyos case. For now I'm hopeful but trying not to let myself get optimistic. Time will tell.
Replies to "Hi @karukgirl, thanks for the welcome. I'm in a small Alberta town 450 miles straight north..."
Hi! I just answered a long answer, then read this-I was scared too with all of the heart failure warnings and I was also my cardiologist's first patient. He is the only dr. in the practice of 9 cardiologists that is having his patients go on Camzyos. It was a lot of work for him at first, but now he has the system down and has recommended other patients to start as I have had such great success on it. 🙂 It sounds beautiful where you live! I love Yellowstone!
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I bet it gets cold in the the winter up there!
You have a right to feel concerned about your treatment. Especially since being misdiagnosed for so long. I know the feeling, and was shocked to learn that after the years of misdiagnoses, my heart was failing too. I had no idea and it was not until I made my way to the Mayo clinic I learned this news. They did what no other cardiologist had done. Two very simple tests. A chest x-ray, that showed my heart was enlarged, and a simple lab (BNP) that showed my heart was failing. It woke me up and scared me enough to decide I wanted to live a better life than the one I was. I couldn't bend over to put my shoes on without experiencing tachycardia, head rushes, and shortness of breath. The symptoms I got after eating a bigger than normal meal were the same. I thought I was crazy! My question after all this was why didn't anyone ever order these two simple tests? I was dumbfounded.
I hope for you as you begin this journey on Camzyos is one of confidence in your doctor and the process, which it sounds like you have. It must be a difficult decision to make, and one I can't imagine. All the Camzyos people on here are very brave people in my book. Open heart surgery, though scary, seems like a much easier decision. Are you ready for tomorrow, your first day on this new drug?