HCM-ers: Introduce yourself or just say hi

@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...

Hello @agustafs, and welcome to Mayo Clinic Connect.
@walkinggirl gave you stellar advise, and I echo what she says...it is a good question to ask your doctor.
HCM can most certainly cause SOB (Shortness of breath) and is a common symptom to many of us with HCM and obstructed HCM.
HCM may progress overtime and in the 30 years you have known you had it, it sounds like you have had a case where it has not impacted your life in such a way as to interfere with daily living. But things can change, and it is worth having your cardiologist involvement.
When was your last echo? Is your cardiologist well educated on HCM?

Alan, that is an excellent question - to ask your doctor! Our bodies change as we age, and new symptoms seem to appear periodically. Have you had an echo recently? That test would show if your left ventricle is thickening/enlarging causing shortness of breath. I think that if your doctor does not suggest an echo, be your own advocate to find out the cause of your shortness of breath and make the echo suggestion to him/her.

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.

Hi I'm Alan and was diagnosed with HCM about 30 years ago. I'm now 75 and am mostly asymptomatic except for some shortness of breath issues. I take 80 mg of Sotalol daily for afib control. Is the shortness of breath due to aging or the Sotalol or both?

I was advised to have someone local incase of an emergency as Mayo/St Mary's Hospital is 5 1/2 hours away. Both have the Epic My Chart so my local cardiologist is up to date with all that is being done at Mayo in that rare case I am too unstable to drive that distance. (Otherwise there is no direction for the local to follow and treatment plan may be different)

I only see a cardiologist at Mayo. I have also seen an EP in the heart rhythm clinic at Mayo. My Mayo cardiologist has never suggested I see a local cardiologist. I see him once a year and message if I have any issues between appointments. I have also had a virtual appointments with my cardiologist when I first presented with Afib. So far, this has worked.

I have 2 cardiologists: one at Mayo who iI see annually and another who is local, incase of emergency.

My Mayo cardiologist is my primary cardiologist, who does all the testing and leads my plan of care.

6 months later I see my local cardiologist (on an annual basis) who reviews my chart from Mayo and asses my heart. This keeps them in the loop.

Hi

Betty