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Just Diagnosed with HCOM

Hypertrophic Cardiomyopathy (HCM) | Last Active: Mar 2 7:33am | Replies (75)

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Profile picture for Debra, Volunteer Mentor @karukgirl

Welcome to Mayo Clinic Connect @hougoss, I am glad for you that you found this online community of folks with your same diagnosis.
It certainly is frightening to learn you have a heart condition, and it takes awhile to process all the information there is on this condition. It can feel overwhelming at first, so you are in a good place here on Connect.

I posted some links that you may find interesting to read. I would encourage you to learn as much as you can about what you have living inside your heart, and educate yourself so you can be your own best advocate.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.4hcm.org/
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Is your cardiologist up to date on all things HOCM? It is super important that you get a doctor well versed in the treatment of this condition...a lot of cardiologist miss it and patients go misdiagnosed or undiagnosed for years before finally getting the correct diagnosis. There are many people who have gone to second, third even fourth opinions. This is your life and you owe it to yourself to be certain you have the right plan at the right time.
It's important to feel like you are being heard, and that you have a good relationship with your cardiologist going forward on the Camzyos route.

It is a lot to take in all at once, so take a deep breath, relax, and start learning. It definitely is scary at first, but the more you know, the less you have to battle the fear.
When do you start on Camzyos?
When will you see your cardiologist again for your next echo?

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Replies to "Welcome to Mayo Clinic Connect @hougoss, I am glad for you that you found this online..."

Thank you for your reply. I just saw my Cardiologist this week and now am waiting to get the pre authorization for Camzyos. Hopefully I will tolerate it well and it will help me be more active. Right now with the summer heat I cannot walk much without my heart pounding and being short of breath.