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HCM-ers: Introduce yourself or just say hi

Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (941)
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@hncm

I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding, hiking, etc. Never smoked, don't drink, no diabetes, no high bp, no CAD, but sleep apnea with CPAP (which I've been very bad at wearing regularly). Suddenly after an "event" I was diagnosed with HCM! Wait . . . what???? So now what? Glad to find this group because currently feeling helpless and hopeless and want my old life back (especially scuba)!

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Replies to "I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding,..."
Debra, Volunteer Mentor | @karukgirl | Feb 2 3:40pm

Hello Barb, @hncm, I see you are new around here! Welcome to Mayo Clinic Connect.
I'm glad you found this online support group too. It's amazing how good it feels to learn you are not alone. Especially since you were blindsided by this diagnosis.
You sound so active and healthy with an incredible life...no wonder you are scared. I think we pretty much all were when finding out about this HCM/HOCM stuff.
With such an active lifestyle, have you found that you can no longer do your favorite things? Or have you been advised not to until further testing?
Helpless and hopeless are negative feelings. Do not allow them to take control.
You need to educate yourself on everything you can about this condition and be the leader in your own journey.
Have you read this from the Mayo?:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Or this from 4HCM?:
Hypertrophic Cardiomyopathy Association
https://www.4hcm.org
I remember well feeling frightened and scared I was going to die every time I hiked or danced. I was told not to ride my Harley anymore until I had further testing...so I get feeling depressed. HOCM takes so much joy from living.
Is your doctor well trained in HCM?
Have you thought of a second opinion? I had three!
When is your next appointment? Have you been given options for treatment?

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