HCM-ers: Introduce yourself or just say hi

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.

Thank you for your thoughtful reply. It's just so good to be able to comunicate with people who know what I'm talking about.
I had the echo and cardiac MRI and was diagnosed with HCM. I am 69. I still have to be tested by a cardiovascular genetist however to confirm the diagnosis. It's very helpful that you told me that the gene doesn't necessarily show up. I checked out the Hypertrophic Cardiomyopathy Association website and found it very helpful. That's interesting about your daughter also carrying it. I don't have children so that isn't an issue for me. What brought you to a cardiologist in the first place? I had shortness of breath and heart palpitations.
I'm taking a beta blocker right now and have bad days and good days.
Many thanks for replying to me.

Hi @wellgirl
HCM is always or almost always genetic. It can be genetic without a gene showing up on genetic test as in my case. Imagine my surprise when I was diagnosed with Apical HCM at the age of 78. I also do not have high blood pressure or high cholesterol. This is not a disease that is caused by lifestyle. It is just there. My genetic test did not show the gene that caused it. All genes are not known at this time. However, when my children started being screened for HCM, it was found that one of my daughters did indeed have it. An echocardiogram and a cardiac MRI are the best tests to confirm if you have HCM. Check out the Hypertrophic Cardiomyopathy Association website. They have lots of good information. And, if you join, you will have an intake phone call which is a great help. Good luck.