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.

I, too, would like to try avicamten. A year on camzyous, then a septal myectomy and now bnp is up to 144 and gradient back to 50

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.

RECAP:
For my week 24 visit I found out I was on Metoprolol, not Aficamten. I suspected because I didn't feel much different. Only very tired. You have to do this not knowing because it is a double-blind study.
Moving forward :
I am doing a wash-out now...meaning that I am slowly coming off my 200mg dose of Metoprolol. Last dose was today.
My next appointment is June 11th. I will be starting Aficamten that day according to my paperwork. They roll me over to an "open-label extension study". I am assuming that the study will be 24 weeks also with frequent testing. I will keep you all posted.

@walkinggirl I am so proud of you having a septal myectomy! When did you have it done? Where did you have it done? I had mine done in the summer of 2017 at UPENN
Best wishes to you. You will be fine. Think positive. 🙂

I had it done 7/22 at the Mayo Clinic in Rochester, MN. Once the couple of complications were figured out and dealt with (not from the surgery, but my heart's reaction to the big change), I have my full life back. I know I was very fortunate. In fact, I just returned from a weekend walking festival and easily walked 10K every day. I am on 50 mg of Metoprolol, after the incident that happened to make surgery a good next step, I was on 200 mg of Verapamil. Metamucil did not help the side effect. I hope Aficamten will help you!

@walkinggirl I am so happy for you! 10K miles a day! What an accomplishment!!!!
Did verapamil give you undesirable side effects? Are you currently on 50 mg of Metoprolol?

I was hoping to have my full life back after surgery but it did not happen. Can't blame the surgeon. I am sure he did his best. I am sure every case is different. Fingers crossed for the Aficamten.

Yes, now on Metoprolol, perceive no side effects. The Verapamill was to keep the heart from working too hard between the incident in February till surgery. I had been taking Verapimal in a low dose for several years.