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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (808)Comment receiving replies
I truly have such a wonderful team in place, but it took a very long time to get to a place where I can say that. My doctors are so thorough and careful and I feel so blessed to have each of them. I am very scared about starting the new medication, but for the first time, I feel hopeful, I feel like a plan is in place with a backup plan as well and for so long I felt like everyone kept telling me all the dangers and I heard many ‘I don’t knows’, I kind of felt like I was waiting to die, now I see the wheels spinning and movement is happening, so while on one hand I am terrified, on the other I am so hopeful and excited. I just received the order for the camzyos on Tuesday and they told me that it will take about a week or two before I have it on hand, with getting insurance approval and all. So I haven’t started it yet, but hopefully very soon! 😊
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That is awesome! It is a HUGE deal having a great team working with you. I don't know about what happened in your case before this, but I can tell you that in my case I was misdiagnosed for several years and it took my murmur going to 5/6 before my FP insisted the cardiologist do an echo and look for something life threatening. Even then he got it wrong, but after I sought a second and third opinion with the top Centers of Excellence, Mayo got it right the first time. I was in shock that I was being told I needed open heart surgery. But relieved that at least I knew what was wrong. I was told to drink more water. That's why I was so short of breath. So wrong! Anyway, I hope you come back and share on here how it's going. There are some great members here who are so warm and kind, and I am certain they would love to encourage you as you begin. It's scary. Not going to lie. But you are in the right place here on Mayo Connect to learn about others and share information. Praying for only good results 🙂