Has anyone had a septic myectomy and then had to go back on camzyos

Hi @dbrima,
It sounds like you are still having to deal with symptoms after open heart surgery. As I recall you were super sick after being taken off Camzyos, and that Camzyos was not your friend. That would make me wonder why you would be put back on something you reacted to so badly. Just my thoughts, I am not a cardiologist 🙂
I am assuming, if you had a BNP blood test, that your cardiologist would go over the results with you since it's elevated, right? Do you know if it was a BNP test or a NT-ProBNP test? The levels are different for these tests.
The questions you ask are valid, but I think only your medical professional can answer them, have you asked your doctor? Camzyos and the new drug Aficamten work in different ways and only your doctor could give you the answer to your question.
Besides still having some health troubles after surgery, how is your life lately? Were you able to find someone to talk to about your emotional health? You have been on a rough journey, and you are tough because you survived physically, don't quit searching for answers!

I had a septal myectomy in 2017.
Started Mavacamten in 2022. It triggered bad side effects that I never had before.
Started a double-blind clinical trial for Aficamten in 2023.
I am at week 24 and will keep you posted if you request.
Please ask as I normally do not go on this site.
Sincerely

Would like how you get on with Aficamten? Please do let us know. Thanks.

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.