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How to decide whether to take Camzyos or have surgery?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 hours ago | Replies (40)Comment receiving replies
@doctorboo1 Welcome to Connect! Debra has written a very helpful post with links to many other informational items to read. Have you noticed symptoms before you were 79? To share my experience, I will NEVER regret a septal myectomy in 2022 at age almost 76. Breathing had suddenly became difficult with activity. I was a very active person, walk, gym, bike, paddle, garden etc. and suddenly could not do those things without a struggle. Within a couple of months after surgery I resumed them again, slowly at first, and lo and behold, easy breathing. Last week was a 70,000+ step week. You are weighing your options and thoughts, a retired army nurse friend pointed out exactly what you noted: surgery while you are healthy enough if that is recommended to you. Camzyos: you have probably read as I did that it's a miracle drug, it does nothing, it helps for a time and then does not. My doctor said that too, when I asked him what he thought. It was still in testing when my symptoms worsened and my doctor did not recommend it. I was not a good candidate for it. Debra suggested contacting 4hcm.org, they will do an intake and help you with logistics. There are Zoom informational discussions, I am a Face of HCM on that website, look for Linda M in a picture with red hair on a boat. Where do you receive your care?
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@walkinggirl Hi Linda, thanks so much for sharing your experience! I've been reading everything i can get my hands on since my diagnosis. Including overseas studies.
My cardiologist is with Presbyterian Hospital but have an appointment at UTSW June 1.
My doc is clearly a drug guy but UT is a top surgery hospital so my plan is for the 2nd opinion. I have an affection for Mayo's since I grew up in the Midwest and have a relative who works there.
I have not heard the data that Camzyos effects wane but noted few long term studies at all. Im glad to hear you are happy with the surgery. No one has been able to tell me if the enlarged ventricle wall can grow back or whether the fix is permanent. But, it sure seems to be the best option if you want to get back to doing the stuff you used to do.
This hit me hard because I was so active, and so are my brothers in their 80's. Mom lived to 98, several in her family were over 100 and still sharp. Women on my dad's side made it into their 90's too. I'm spoiled! I expected a much longer active life and refuse to back off.
Thanks again for sharing. Im not quitting even if I buy some time by taking the drug initially.
I'll look fir your face on the web page!
You asked if I had symptoms before. Last fall I was dealing with fatigue but no chest discomfort or shortness of breath. I thought the fatigue was lack of fitness due to slacking off on exercise. The SOB, etc started last month.
Even now, if I get out and walk, I feel better. Fewer symptoms when I exercise. Go figure? Lol