HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

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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@05357

I was diagnosed with broken heart syndrome. My ejection/fraction was at 26. I have been wearing the life vest for 3 months - has anyone here wore the vest

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Yes I have worn it for 2 1/2 months. Ejection fracture was 35%. Am having another echo mid-February

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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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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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Hi,
I'm Jim
I'm a HOCM patient that had alcohol septal ablation and now I have stiff heart syndrome as well. I have more appointments at the Mayo in the next few weeks.

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