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HCM with no options for medication for relief of symptoms
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 28 7:46am | Replies (36)Comment receiving replies
Thank you, again, for corresponding. We have some similarities. I am actually a certified yoga teacher and love walking as well. My first sign of trouble was in the Grand Canyon- I literally couldn't breathe my way out and had to spend the night!
One difference is that I do not have an obstruction and am not a candidate for any surgery. That’s why they are trying this new drug Avimaectem?- for people like me.
I’m so glad you got relief from your surgery. I was told the only surgery for me would be a new heart, but that only happens in about 5% of patients.
My greatest concern is afib. I know I have had mild versions of it, just not sure how bad it has to be to call 911 (I live alone).
Again, thank you for taking the time to reach out. It’s so powerful speaking to others who can relate.
Replies to "Thank you, again, for corresponding. We have some similarities. I am actually a certified yoga teacher..."
My situation sounds similar to yours no concerning obstruction gradient, EF “normal” and I too am inquiring about Aficamten. Have you had a cardiac MRI? This is newer diagnostic tool that is correlating extent of fibrosis with symptoms/prognosis which was eye-opening but makes a lot of sense in my case. I had a ”primary prevention” ICD for years with minimal symptoms. Last few years I’ve become way more symptomatic and more often which like others have shared significantly impacts QOL. I feel like I have lost so much of my life and dreams bcz of this so I’m inquiring about septal myectomy which I would onmy do at Mayo or see about Aficamten
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Hi @rmhc123
I have Apical Hypertrophic Cardiomyopathy (non obstructive) and during the past year persistent Afib w rvr presented itself up until the afib my only symptom was occasional lightheadedness. The afib caused fatigue and frequent very high heart rates even with rate medication. Afib needs to be treated aggressively when you have hcm. I see a cardiologist at Mayo clinic in Rochester. At my first visit he mentioned several medications he uses if I were to develop symptoms. When afib came he sent me to the heart rhythm clinic at Mayo. The Ep I saw gave me all my options and when I asked his recommendation he said he would start with medication so that is what I did. I had to be in the hospital three days to get this drug but now feel great and have been in sinus rhythm with no side effects for 9 months now. I also have an Apical aneurysm which happens in a small percentage of non obstructive patients. If you have afib, are you being treated for it? I can't say enough good things about Mayo Clinic. You might also check out the Hypertrophic Cardiomyopathy Association online and on Facebook.