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Symptoms getting worse on Camzyos

Hypertrophic Cardiomyopathy (HCM) | Last Active: May 1 9:30am | Replies (19)

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Profile picture for Linda, Volunteer Mentor @walkinggirl

@cash298 Hi Teri! You are just a week or so past your surgery! You are an inspiration because you are quickly chiming in by sharing your experience and your decision to have surgery. Hint: compare how you feel today against how you felt a week ago rather than how you felt yesterday. Progress. Which fears of what's to come do you have? Perhaps we bloggers can share our experiences to help you deal with your fears. Your story regarding Camzyos emphasizes what my cardiologist told me and what I have read from discussion contributors. Three things seem to happen: it's a wonder drug, it does nothing or it's wonderful for a while and then it is not. Your advice about care at a high-volume center is perfect! I was almost 76 in 2022 when I had a septal myectomy at Mayo and never regretted it. I hope your pain subsides quickly (I had no pain, but movement was slow). Wishing you steady recovery during the upcoming future.

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Replies to "@cash298 Hi Teri! You are just a week or so past your surgery! You are an..."

@walkinggirl WOW, No pain!!! That would be great. I mostly have chest muscle and nerve pain now, I guess severed nerves healing . I cannot believe that I’m 2 weeks out tomorrow, and the progress. I just keep thinking “ what if this pain never goes away and I never have my capacity back”? I know it’s an unfounded fear but one can’t help but worry. My exp at CC was wonderful, they took such great coats of me and I was in and gone on the 4th day. I am an impatient person so I just ordered the nuvuadermis silicone tape so I’ll be ready. It will be perfect for the pool with my grandkids. Thanks for your response. If anyone has specific questions, it’s still all fresh in my mind 😊