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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
@sassyrdh329. Thank you for sharing your experience. I have been out of the hospital for a month now and am angry that everything is taking so long. My cardiologist was only interested in the drugs and I had to push for a surgical consult. I strongly feel I'm getting worse and feel this thing has become a nightmare. Delays , mistakes, can't find records, approval after approval, signature after signature..... Someone even scheduled me for knee surgery on My Chart and now I'm getting repeated messages to prepare for it or watch videos.
I feel like getting on a plane and flying to Rochester, and just walk in the door.
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@doctorboo1 I am so sorry that you are dealing with a difficult situation regarding your treatment. Do you receive care at a COE (Center of Excellence) for HCM? I believe you can self-refer (request an appointment) at Mayo - here is where you can do that: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/request-appointment/ptc-20122124 Be sure to select Rochester. When it was time for me to have a septal myectomy, my cardiologist here in Upstate NY referred me, sent all of my test results and whatever else they needed. I was accepted as a patient within a couple of weeks. It is definitely worth every ounce of effort to advocate for yourself; you deserve the very best care possible. Is there a different cardiologist near you that would work with you to get this done? In the meantime, you can decide to go to that website link and start the process on your own. Wishing you success in accomplishing this!