HCM-ers: Introduce yourself or just say hi

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

Yes, this is what I've done as well. I'm not close enough to a COE to make using it practical, but the cardiologist I have been referred to is trained and quite knowledgeable about HOCM. I feel fortunate to have found him and his team. 🙂

An alternative to care at a COE, which does not exist near my home, is to seek a cardiologist trained and/or well versed in HCM and HOCM. That was the case in my situation and I was tested and diagnosed soon after my family doctor (this is before the term primary care was used), heard a murmur for the first time.

My HCM was diagnosed after I asked my primary provider to check my thyroid levels as I was having a lot of palpatations and thought perhaps my thyroid meds needed increased. Thyroid was fine so she ordered an ekg which was abnormal and then an echo and then an MRI. I have not seen a local cardiologist because it takes so long to get in that I already had an appointment at Mayo in Rochester before I heard from a local doctor. I don't know where you live, but the Hypertrophic Cardiologist Association, the American Heart Association, and the American College of Cardiology all recommend that an HCM patient should seek care at a Center of Excellence with an HCM clinic which see a large volume of HCM patients. As I stated I see a cardiologist at Mayo Clinic and feel fortunate to do so. About six months into my treatment I developed persistent Afib which is now under control thanks to my doctors at Mayo. It is well worth travel time to find a Center of Excellence.