Third month of Camzyos my ef dropped to 30-35. At what point do they

As long as my RF stays within normal range, my specialty cardiologist will continue me on Camzyy and no surgery.

RF?

My HCM cardiologist initially gave me 3 choices, alcohol ablation, Camzyos or surgery. I was afraid of Camzyos because of the side effects. I had a cardiac cath, TEE and met with the cardiac surgeon and decided to go with the surgery. After these tests, they said I wasn’t a candidate for the alcohol ablation. I already have a pacemaker. My symptoms of SOB and dizziness get worse with high heat and humidity.

Heat and humidity affect me so much. I can tell by my level of strength and breathing when I’m inside with a/c whether or not it’s hot or humid. Much more difficult to function outside. Long summer this year

I have the same issue with heat and humidity.

@lakehappy
The Humidity wipes me out. I can not wait for winter! It has been a long summer in the south.

I’m not sure at what point they do surgery, but I decided to skip everything and go right to a septal myectomy. I just wanted to be done with everything and avoid all the monitoring that came with Camzyos.
I had my surgery on September 26th at Mayo in Rochester, Minnesota. My surgeon was Dr. Dearani and he was amazing. Was out of the hospital in four days. I’m supposed to walk every day to build up my strength, as Medicare wouldn’t cover Cardiac Rehab. So I walk 4x a day and add a bit more every 3-4 days. Yesterday I had 6500 steps.
Today, I’m a bit tired today, so will only go 3x. I pace myself, as my heart is healing and I listen to my body.
If you ever need surgery, it’s not as bad as it sounds. Not so much pain, but lots of fatigue the first week.
I hope this helps. God Bless.

@mbi Hi, good info to know! Did you start out at Mayo in Rochester? Or transfer there? I live near Tucson and am trying to decide what to do. My cardiologist wants me to try Camzyos first, but it's been a battle to get everything approved. Surgery option would have been done by now!

@pga17 So will you be getting the septal myectomy surgery?

I also was started on Camzyos and felt great but the dosage had to be lowered after the first and then second month until the 3rd echo showed my ef was at 50 and had to stop, even though I was on 2.5mg. I was outside the BMyers protocol.
The hassle of trying to get the new RX of Camzyos every month and in a timely fashion, made it easy for me to decide to go to Mayo Rochester and get the septal myectomy. I live in rural CO. That was 6 months ago and I am SO glad I did! No regrets! I have so much more energy and endurance now and Dr. Stephens at Mayo and the whole care was amazing.