1. < Hypertrophic Cardiomyopathy (HCM)
Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page. 

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

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

Mentor
Debra, Volunteer Mentor | @karukgirl | 1 day ago
In reply to @alwiedeman "Hi, My name is Al, I’m from Alberta and just got diagnosed with HCM in January..." + (show)
@alwiedeman

Hi, My name is Al, I’m from Alberta and just got diagnosed with HCM in January 2025 at 76. Hope to start my journey on Camzyos in the next week or so. I think I’ve suffered with this condition for some time but was just diagnosed with HCM recently. My symptoms don’t seem as serious as those of others I have read about in this forum. Here we go………….

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Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect!
Your story sounds like so many of the HCM/HOCM folks on here...some of us tend to go for years with either the wrong diagnosis or no diagnosis.
Have you had a chance to read the Camzyos support group discussions?
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Is your cardiologist up-to-date on all things HCM and Camzyos?
There are several members on Connect from Canada, and it sounds like they have a pretty good system for those who are taking this drug.
Are you active and able to exercise even with HCM?

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | 1 day ago
In reply to @mnsportsmanjr "Hello my name is Brandon, I am 42 years old and I am from Minnesota. I..." + (show)
@mnsportsmanjr

Hello my name is Brandon, I am 42 years old and I am from Minnesota. I was diagnosed with HCM in 2014, open heart surgery in 2016 at the age of 33. Last month I found out I am right on the edge of being too far gone for Camzyos so they are trying to get me on it as soon as possible to hopefully put off another open heart for several years.

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Hi Brandon @mnsportsmanjr, and welcome to Mayo Clinic Connect!
I'm glad you are here and able to share your story with others. Dr Dearani was part of my surgical team as well, and he is considered one of the best in world for septal myectomies.
You are in Minnesota, so I am assuming (which we know what that means!) that you are part of the Hypertrophic Cardiomyopathy clinic at Mayo?
What do you mean you are "right on the edge of being too far gone for Camzyos?" Has your HCM returned or is something else going on with your heart? Forty-two is a youngster, you want to take care of yourself as best you can...

REPLY
alwiedeman | @alwiedeman | 1 day ago
In reply to @karukgirl "Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect! Your story sounds..." + (show)
@karukgirl

Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect!
Your story sounds like so many of the HCM/HOCM folks on here...some of us tend to go for years with either the wrong diagnosis or no diagnosis.
Have you had a chance to read the Camzyos support group discussions?
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Is your cardiologist up-to-date on all things HCM and Camzyos?
There are several members on Connect from Canada, and it sounds like they have a pretty good system for those who are taking this drug.
Are you active and able to exercise even with HCM?

Jump to this post

As indicated I was just diagnosed with HCM in January 2025. I have not changed my exercise regimen for quite sometime and my breathing or other symptoms seem not to have changed a whole bunch. I’m golfing (walking) 9 holes every week. I’m riding my electric bike twice a week for about 60 km, (45 miles). I’m not pushing myself to the same extent I was a year or so ago, but am more than able to keep up. The electric bike is much easier than the hybrid, but I am 76. I was put in touch with a cardiologist here in Edmonton and he comes across really good. He referred me to a Bristol Myers support Group out of Eastern Canada. They will be getting me on the drug soon, I hope. All the costs are covered through Blue Cross and Sun Life. I will report further when I actually get started on Camzyos!

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