HCM-ers: Introduce yourself or just say hi

@birdhouse, Welcome to Mayo Clinic Connect. You have discovered a great place to learn from others with your same diagnosis. Have you had a chance to read some of the stories here on Connect about others who share their struggles and symptoms?
What symptoms do you have with your HCM? How long did it take before you were diagnosed?

Hi everyone!

I was formally diagnosed with HOCM in 2019, having heart issues misdiagnosed as coronary artery spasming since 2006.

Happy to be here and provide positive support. I still am able to live an almost normal lifestyle with a 125 gradient with changing diet, adding key supplements and improving my environment.

Hi!

So far, my treatment consists of a beta-blocker combined with blood pressure and cholesterol medication. I also continue my mission of improving my diet and daily activity with regular follow-up visits with my cardiologist. Overall, I am feeling so much better than I did when I was diagnosed in May. I feel fortunate that surgery has not been needed at this point, but I want to stay on top of this diagnosis by keeping up with the latest research. It helps to see how others are handling this diagnosis and have already picked up a few things I hadn't thought about before. 🙂

Hi,
After five months of being told my swollen ankles, shortness of breath and heart palpitations were nothing. My PCP wasn't saying it, but I think he thought it was having panic attacks. I pointed out that swollen ankles weren't caused by panic attacks. He replied, "Anything can be psychological. It starts in your brain. " Fortunately, I have a friend who is a doctor and he told me I needed a cardiologist. I was diagnosed with HCM in November. I'm supposed to have the genetic test in June but the cardiologist said she was certain I have HCM. I've been on a beta blocker and diuretic and am doing better but this is all after cancer treatment and I am feeling blindsided by the heart disease. It seems to have come out of nowhere. I did not have high cholesterol or blood pressure. There was nothing to indicate I might have heart disease. Could this have been triggered by radiation and chemo? Right now I have good days and bad days. It's just good to see what others are experiencing.

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.

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.

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.

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.

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. 🙂

Betty