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Has anyone had a septic myectomy and then had to go back on camzyos
Hypertrophic Cardiomyopathy (HCM) | Last Active: Jun 3 8:55am | Replies (20)Comment receiving replies
I am on a clinical trial. It is not FDA-approved yet. I am on week 24.
You have to find a cardiologist or a hospital that participates in clinical trials. My first cardiologist who diagnosed me did not participate with Mavacamten. So I moved on.
My guess is you start with your cardiologist 1st. Not all cardiologists participate.
I was referred by a doctor from UPENN to NYU. I went to NYU for Mavacamten. Then I switched to Morristown Hospital in NJ. It was closer for me.
The new cardiologist asked me if I was willing to participate in a clinical trial. I agreed. Especially because I had septal myectomy already so what did I have to lose. A lot of red tape and I had rigorous screening before I was accepted. Quite a process.
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deanna529, please update us periodically on how Aficamten is working out for you. Please relay what you are feeling differently now that you are on week 24. At my last cardiologist visit, I asked about Mavacamten only because I was reading about it on this blog - so far I am doing fine after a septal myectomy. He said that in his experience, people generally eventually need surgery, which I know from reading was less than successful for you. My gradient was at least in the 60's when I started having issues, so Mavacamten was not recommended, it's now 0 or close to it. I do fear a regrowth/thickening of the ventricle wall, so far, so good.