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DiscussionHCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 9 hours ago | Replies (877)Comment receiving replies
Replies to "Hi I guess I was lucky , being an avid cyclist and competed a few times..."
Whew! That's a lot of miles! So that answers my question about physical fitness...the answer is YES!
As much as I would like to answer your question, I am not a doctor, and I dare not pretend to be one! I can share only my story, and in sharing there may be some tidbits of information.
In my case, yes, it got worse and worse over the course of maybe four or five years. I am a big time walker/hiker, living in far Northern California, where we have some pretty big mountains surrounding us. I hiked at least once a week with with my good friend.
I noticed the higher in elevation I would be, the harder it became for me. My hiking buddy/friend would be standing up top watching me struggle. Stop. Hike. Struggle. Stop. Hike. It was so wild because I was so healthy. Or so I thought!
Over time I noticed my everyday six-mile walk was affected. There were times I would be so short of breath, even on flat ground, I would have to stop. Like a dozen times in a mile. I knew in my heart (pun intended) something was terribly wrong. Sadly, the local cardiologist in my town did not know what I had, and so I was diagnosed with about four different conditions over the years. None of which I had.
Fast forward. It got so bad, I was told I needed open heart surgery for a rare heart condition called Sub-aortic Membrane. I was referred to our local heart surgery. But I was concerned about the words "rare" and "local" surgeon and asked to be referred to two outside heart leaders.
I wound up at Mayo Clinic where I was correctly diagnosed with HOCM. It was obstructed. Therefore, the symptoms! Tada! I now knew what I really had.
But, it was scary too. I was told SCD, sudden cardiac death is a real thing with HOCM. That gets your attention.
To make this story even longer (!) I ended up having open heart surgery at the Mayo and have never looked back! I got my life back. I won't say it cured me...there is no cure for HCM, but I can hike. I can walk. I can do so many things I lost to ability to do with the severe obstruction.
Marc?
Only your doctor can share medical knowledge with you. But sadly HCM and HOCM are rather elusive and you may need to become your own best advocate. Learn as much as you can to help yourself. Have you had a chance to do any research? There is a lot of great info out there. Here's a great link from the Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And here is another from an HCM organization:
https://4hcm.org
I don't want to scare you...but HCM should not be taken casually! But also, you need to live your best life. It sounds like perhaps your father was a victim of this disease...that should get your attention, right? You have come to the right place for sharing information.
Glad you're here!