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Colleen Young, Connect Director avatar

HCM-ers: Introduce yourself or just say hi

Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (1114)
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Profile picture for apdaye @apdaye

Hello. I have a pacer/defibrillator. Non-obstructive HCM. I have a low burden of PVS’s that sometimes go into vtach for several seconds. I almost pass out( never been shocked ). I have been put on multiple meds( which do not lesson these issues. The meds do increase swelling, suffocating sensations, and fatigue. Two electrophysiologists have refused ablation, stating “ hard to re-create the episodes and my heart muscle is too thick for his instruments”. I am still able to walk 3-4 miles 4 times a week and mow my own grass. I am having to accept my limitations at 66 and consider myself lucky in most respects. I really feel like the doctors here do not have an understanding of this disease. I feel vindicated when I read other’s comments.

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Replies to "Hello. I have a pacer/defibrillator. Non-obstructive HCM. I have a low burden of PVS’s that sometimes..."
Debra, Volunteer Mentor | @karukgirl | May 27, 2025

@apdaye,
I am so glad that you get a feeling of "vindication" from other members here on Connect. I know for myself, it was wonderful to learn other people out there knew what HOCM was like. It feels good to not be alone.
How frustrating it must be for you to not feel you have the ear of the doctors you see...you know your body better than anyone and you should not settle.
It's great that at 66 you can still walk as much as do and mow your lawn...that can be exercise for sure, especially during spring when grass goes into overtime and you can practically watch it grow in front of your eyes!
I am not sure how many cardiologists you have seen for your HCM, but I would not let that stop you from seeking an opinion from another cardiologist.
Accepting your limitations is something we all start doing as we age. I wish I could do a cartwheel, and in my mind I can. But reality says do not attempt this, you fool!
You already feel like your doctors do not have an understanding of HCM, have you gone to a COE (Center of Excellence) like the Mayo Clinic or Cleveland Clinic? These both are top COEs for HCM/HOCM.
This is your life, and 66 is young in my opinion...

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