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Colleen Young, Connect Director avatar

HCM-ers: Introduce yourself or just say hi

Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 hours ago | Replies (1049)
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Profile picture for evw @evw

I am Ellen05121941.
Age 84. Diagnosed HOCM 2008, Born with it. live in small Arizona town with rural hospital. not much support here. Out of breath even with one block walk. Current interventional cardiologist recommends Camyzos. Very expensive, does it help? Phoenix Mayo not available with current insurance, need to find different plan or maybe original Medicare. Comments please,

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Replies to "I am Ellen05121941. Age 84. Diagnosed HOCM 2008, Born with it. live in small Arizona town..."
brumasterj | @brumasterj | Sep 22 6:52am

Sorry to hear your insurance is not accepted at Mayo! Yes camzyos is expensive but your prescribing team should be able to help in finding ways to make it very affordable. Like $10.00 a month affordable! Yes camzyos does work so i hope ykur able to find a cardiologist that is at a COE
Good luck with everything

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Debra, Volunteer Mentor | @karukgirl | Sep 22 10:36am

Hello Ellen @evw, and welcome to Mayo Clinic Connect. Connect is here to do just that...connect you with others who share your same condition and allow you to feel support.
I know what you mean about not having much support with HOCM...when I first found out I was so surprised, didn't know what it was, could barely spell it and had no one to talk to.
That all changed when I found Mayo Clinic Connect.

Have you had a chance to poke around here on Connect? There is a Camzyos group here that have a lot of information they have shared.
Here are a couple of links to the Camzyos folks:
https://connect.mayoclinic.org/comment/1370280/
https://connect.mayoclinic.org/comment/1227383/
And here is a link to the Camzyos site:
https://www.camzyos.com
You can also stroll through the pages of Camzyos questions and answers by typing in "Camzyos" in the search bar at the top of the page. There are lots of Q &A there!

Don't get discouraged, this could be a frustrating process...but with a little help from your cardiologist and your new friends here on Connect, hopefully you will get to the place you need.

Camzyos is a miracle for some, and for others does not work. That's because we are all unique and no two of us are alike.
You would do well to learn as much as you can so you can be a better advocate for yourself and help with decisions about your treatment.

I am not an expert on insurance or Medicare, but I do believe Mayo Clinic takes Medicare.
You could ask those questions about insurance by contacting the Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us
Well...I sure gave you a lot of homework, didn't I!
I don't want to overwhelm you with tons of information, so just take your time and read through some of this and hopefully you will find something that helps you.
When do you see your doctor again to discuss treatment options?

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