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Hello @mrsbubbles, and welcome to Mayo Clinic Connect.
That's quite a story you've shared, and sadly it is familiar to many other people with HOCM.
Here's link to Mayo Clinic's Hypertrophic Cardiomyopathy information, there may be something there you have not yet read about:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Since you are new here, there are thousands of posts in our little HCM group loaded with story after story, similar to yours. My story is similar, so I can identify. By the time I got to the Mayo Clinic my HOCM was severe, and open heart surgery was the recommendation. I had been misdiagnosed with four or five different heart conditions over about 4 years...none of which I had.
I can share with you you I felt like I had left the planet and gone to another universe when I sat in the patient chair and heard those words. Shock. Disbelief. Fear. Something beyond Fear. More fear.
If I could tell you one piece of advice it would be this: Find a Center of Excellence and get a second, third or even fourth opinion. The Mayo Clinic is the world's leading expert on HCM and HOCM. I live on the other side of the County from Minnesota, and had to travel to get there. But I will never regret going there. At last I was able to find the answers to years of symptoms chalked up to something it was not.
It was both terrifying and a relief.
Here is another link to an organization that also has listed COE's by State:
https://www.4hcm.org/
It's only normal to be afraid and confused. I bet each one of us were when first diagnosed. Take some time to learn as much as you can about what is living inside your chest. This will help you help the cardiologist and you will be able to make informed decisions about your future care.
Camzyos and the latest drug, aficamten, work for some like a miracle, and others not so much. Each one of us is unique and what works for some may not work for you. Only you and your cardiologist can make that determinaiton.
When is your next appointment?
Have you got a list of questions?
Replies to "Hello @mrsbubbles, and welcome to Mayo Clinic Connect. That's quite a story you've shared, and sadly..."
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@karukgirl hi karukgirl, I'm in a dilemma. I just changed my Medicare Advantage HMO plan in Jan before this diagnosis. I just completed breast cancer treatments last year (like I have nothing else to do) so I had to change my insurance because on 2026 many insurance companies changed their in-network cancer treatment coverage. The NCI designated Optum Center of Excellence in my area wasn't in network for 2026 so I changed the insurance company and the level PPO/HMO so I can still have treatment if I needed it in 2026, financially, not thinking about my heart issues because I never had a diagnosis especially a severe disease. My old cardiologist only said (in addition HTN, blood thinners, Familial Hypercholesterolemia and mitral regurgitation). One day ... Could be a few years or ten years you probably would need a mitral valve replacement.... Otherwise you're fine, everything is the same as last year and the year before.
So obviously I'm like a hawk watching my tests and hoping my cancer doesn't return BUT I have that assurance that I have a in-network center of excellence for cancer treatment within 30 min from my home and family.
Now my current insurance says any centers of excellence for surgery and/or treatment is out-of-network so I'm stuck!
Just trying to keep my positive attitude.
Thanx for sharing !