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Septal Myectomy Consideration

Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 12, 2025 | Replies (57)

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Profile picture for Debra, Volunteer Mentor @karukgirl

Hello and welcome to Mayo Clinic Connect @bilingual84
I'm so glad you found this site. You certainly have had some terrible setbacks!
Your story has so many components of many of our stories:
Taking years to learn what you really have, having surgery canceled, taking meds you don't want to, not feeling heard and just told to take Camzyos.
You are being heard here! And I/we feel your distress and fear.
Being young is a factor on your side. If the weight is an issue, this is in your control, yes?
As far as the Camzyos program in Slovenia, I have even less value I can add, but I can ask you this...are you able to look at the Camzyos site?
This is the site online for patients (US? International? I don't know!)
https://www.camzyos.com/
Perhaps you can find some information to ease your mind a little.
Have you started Camzyos?
When do you see your "character" Cardiologist next?

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Replies to "Hello and welcome to Mayo Clinic Connect @bilingual84 I'm so glad you found this site. You..."

Hi and thank you! I am so glad I found this site too!
I have been working on losing weight, down 20 lb so far, but I am going to have to do twice that. But I’ll get there!
I have STUDIED (haha) the Camzyos site as I am a person who likes to be fully informed (that is probably why I have such a problem with my cardiologist not giving me enough info). It did reassure me a little, but I still have anxiety. I’m sure that will pass, I just have to start it.
I just got my pills today and am planning on taking the first dose tomorrow morning, so wish me luck.
I am seeing my cardiologist first week of June for my fist evaluation echo.