Connect
← Return to Has anyone had a septic myectomy and then had to go back on camzyos
Discussion
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
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. 🙂
Replies to "RECAP: For my week 24 visit I found out I was on Metoprolol, not Aficamten. I..."
Connect
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!