1. < Hypertrophic Cardiomyopathy (HCM)
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Just Diagnosed with HCOM

Posted by hougoss @hougoss, Jul 26, 2025

I am 65 and it has been confirmed that I have Obstructive Hypertrophic Cardiomyopathy. I’m about to start taking Camzyos. Honestly I am still digesting this and am scared and feeling a little depressed.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

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fastar1 | @fastar1 | Feb 2 7:10pm
In reply to @walkinggirl "@fastar1 I, too, welcome you to this big-hearted discussion! I see you are a Baystater! As..." + (show)
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@fastar1 I, too, welcome you to this big-hearted discussion! I see you are a Baystater! As you are gathering your thoughts and coming to terms with dealing with HCM, I agree that learning all you can about this inherited condition is so important. The hospitals in the Boston area, Mass General included, are known for excellency. Please know that 2 places in MA have been labeled COEs (Centers of Excellence) by the Hypertrophic Cardiomyopathy Association (4hcm.org). Neither of these two places were COEs when I traveled to Mayo in 2022 for surgery. Here are links to the two COEs in MA. https://www.4hcm.org/coe/brigham-2 and the other is https://www.4hcm.org/coe/lahey

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@walkinggirl Thank you very much for the warm welcome! And yes, I'm a Baystater! I appreciate the information about the COEs in MA. This is great information and I will keep it in my back pocket as I progress on this journey. I am still early in the testing and data collection process. I'll come back and update you all after my MRI in April. In the meantime, keep up the good fight!

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hougoss | @hougoss | Mar 1 6:35am
In reply to @hougoss "So did the doctor not recommend Camzyos as a treatment? Just wondering if the alcohol ablation..." + (show)
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So did the doctor not recommend Camzyos as a treatment? Just wondering if the alcohol ablation is a better option for me as well.

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@hougoss He did recommend Camzyos but my insurance ( Medicare) denied it.

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Mentor
Linda, Volunteer Mentor | @walkinggirl | Mar 2 6:09am
In reply to @hougoss "@hougoss He did recommend Camzyos but my insurance ( Medicare) denied it." + (show)
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@hougoss He did recommend Camzyos but my insurance ( Medicare) denied it.

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@hougoss I am sorry that your insurance denied coverage for Camzyos. You'd think that they would do everything in their power to help improve health.... Please tell your doctor about your predicament, he/she may have contacts. Also please contact the people at 4hcm.org because they have resources/contact info for help in obtaining Camzyos. That organization is a good contact to supplement the Mayo Connect blog for help along the HCM journey. The phone number and other ways to contact them are on the website. In the past contributors to the Camzyos discussions have found ways to obtain b the drug. Let us know how it works out for you!

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dbruskin | @dbruskin | Mar 2 7:32am

I am 79 and Medicare is paying for my Camzyos. Your doctor needs to pursue this with Medicare. They should cover it

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