← Return to HCM-ers: Introduce yourself or just say hi

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@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?

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Replies to "Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect! Your story sounds..."

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!

I'm from Canada as well, from Winnipeg. I started taking camzyos about 6 weeks ago and I'm quite delighted and surprised that I'm noticing a difference - my gradient has gone from 80 to 30 and I'm finding I have more stamina than I've had in a very long time. Long staircases and uphill are still a challenge but I'm now optimistic that I'll be doing better at some point.
We're visiting in Vancouver right now so I'll see if there's a difference walking around the streets here from when I was last here and having to stop every half block to catch my breath.