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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
Hi. I'm 70 and have had symptoms of HCM since birth (a very long and winding road). I was approached about septal myectomy at Mayo in 2009 and again in 2014. I declined as my condition was managable with meds at the time and lifestyle changes. I lived alone and was hesitant to undergo the rehabilitaton needed with open heart surgery. I started on Camzyos in 2022 within months of it being FDA approved and had dramatic positive impact within a few days. My NYHA classification dropped from III to II, I was much less short of breath, fewer palpitations, improved circulation and a hopeful attitude people in my life took notice. I felt renewed!! In the last few years I've had arrhythmia problems to manage while remaining on 2.5 mg/day of Camzyos and am glad I did not have surgery.
My opinion is that surgery is doable if the medication does not work; close monitoring will enable you to know that quickly. I also believe surgery is a preferred approach for younger people who do not want to be in a liftime of medication. The rigors of open heart surgery at this age are also a consideration. Best to ask around as to other's experience and wish you the best of good health.
Replies to "Hi. I'm 70 and have had symptoms of HCM since birth (a very long and winding..."
@gwenm I am so glad that medication for your HCM is working for you! There are mixed results. I have read here on Connect and my cardiologist read in the medical literature that it's a miracle drug; it does not help at all or that it works for a time and then does not work. We are all individuals and have unique outcomes. I would like to add that I had a septal myectomy 3 weeks before my 76th birthday in 2022 and there are other "old timers" like me who had a successful and positive experience. That said, I had always been a fit and active person who ate a healthy diet etc. and it is likely that figured into the decision to accept me as a patient at Mayo. I did not find the PT and OT starting 24 hours after surgery difficult ("you have a strong core and legs"), slow and deliberate movements were needed. A week later we were home. The next day I was cooking a bit, walking short distances many times a day outside and more. Yes, slowly, for short periods of time and more carefully during the recovery time while listening to my body. If you are advised to have surgery, please do not rule it out on account of age. Your insurance may cover home help for a time, mine did if I needed it as well as 2 weeks of meals.
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@gwenm
Hi, thank you for sharing your experience. I guess I have to meet with the surgical group at UTSW and otherwise start the Camzyos. I hear you saying that arythmias can develop after surgery. I have no issues with that so if drug works, maybe i should not be in a hurry to push for surgical options.