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Anyone take new drug Camzyos (mavacamten) for HCM?

Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 19 9:04am | Replies (854)
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@oliviasoma

I wanted to be able to take this so bad..I qualified and took it for almost a month until my first echo..but it gave me horrible headaches..that is the only side effect I had. But that was enough for them to take me off of it. I had hopes it would help reduce the obstruction and prevent surgery. Alas, not so, surgery, here I come in June..quite nervous.

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Replies to "I wanted to be able to take this so bad..I qualified and took it for almost..."
walkinggirl | @walkinggirl | Apr 18 12:33pm

I understand your nervousness about the upcoming surgery! Many, many of us were in your shoes and quite frankly, I think your relatively mild "quite nervous" is an understatement. Please be sure to read all of the posts in the blog Debra @ karukgirl recently started called What I Learned From My Open Heart Surgery. Where will it take place? At a COE (Center of Excellence) you will be in good hands - nevertheless, of course, who would not have those feelings before surgery? Find out all you can, read the posts to learn how to prepare and what to expect. Keep in mind that we are all different - resulting in slightly different experiences. ((HUGS))

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ginabassford | @ginabassford | Apr 18 1:48pm

Are you having the surgery at Mayo in Rochester? If so, when arrangements are made for surgery, how long do you have to wait before they can actually do the surgery?

I go to Rochester in 2 weeks for an eval, and I am confident surgery will be scheduled. I am curious about the wait time between the decision and when it can do done.

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