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Camzyos improved my gradient but my symptoms are not better
Hypertrophic Cardiomyopathy (HCM) | Last Active: Mar 3 6:46am | Replies (40)Comment receiving replies
Im in the same situation. I just talked to the Heart Failure Clinic today and they didnt seem to have an answer except "yes, that is a hard situation to be in", I am going to Cleveland this month (20th) to try to get them to take over my care, which is also what my cardiologist wants. The the more I read the more it says the symptoms can take up to 33 months to get better..... this sure doesn't make our decisions any better. But I am thinking about is that on medication we have hope to getting back to normal activities, the surgery can mean never getting back to the things you used to do. Please read about open heart surgery side effects, I am going to study it before I go to Cleveland, what I have read so far is a bit scary. Good luck and lots of prayers, Teri
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@cash298 I am wondering which comment you are responding to. Camzyos helps some greatly and others not at all, we are all so different. Please explain the surgery side effects you read about and where you read about them that prevent patients from going back to what they used to do. The surgery is the gold star treatment for HCM done at a COE like Mayo Clinic where the success rate is 99%+. I had a septal myectomy in 2022 at age almost 76 and still walk 10k in 2.25 hours, ride my bike, I even went to the Galapagos Islands to hike, snorkel and kayak and also went to Machu Picchu on the same adventure in 1/2025. Please do read the posts under the Connect topic What I Learned From My Open Heart Surgery." It's a scary thought to face any surgery, talk to your doctor, learn all you can and ask every question you have. We are all so different, each HCM patient has their unique story.