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Anyone take new drug Camzyos (mavacamten) for HCM?

Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (808)
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@dbrima

My daughter is being measured for open heart. She is 38, divorced, with a son (5) on the spectrum. We had some weeks of good results on camzyous and many bad. She was first in Houston. Everyone is different, however. She never really had bad side effects. Gradient would go to 0 and several weeks rise to 100, then back down, then up again. Side effects more from heart failure. We are all terrified. She only weighs 100. Suffered from septic shock in January. Has been on camzyous since last October.

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Replies to "My daughter is being measured for open heart. She is 38, divorced, with a son (5)..."
Debra, Volunteer Mentor | @karukgirl | May 24, 2023

I have not stopped thinking about you and your daughter. It is such a frightening situation, @dbrima. I hope you will come back and post how she is doing, what the test results show and what the plan going forward is. Reach out whenever you feel like it...I know you have a lot on your plate right now. While you are caring for your grandson and trying to help your daughter, be sure to take care of you too! That is super important, as you have so much going on, and sometimes we forget to take care of ourselves in the midst of terrible trials. Thank you for sharing your daughter's experience with others. It may not be want people want to hear, but it is the truth in your case and it is always best to know both sides of the story. When will you know the results and the plan?

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