HCM-ers: Introduce yourself or just say hi

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!

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 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.

@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?

Welcome to Mayo Clinic Connect @dnorberg, I am glad you found this online support group. Have you had a chance to read some of the posts here?
Since your diagnosis last May, have you started any form of treatment, or are you still in the early testing phase?

Hi birdhouse,
I have non-obstructive HCM (I have Apical HCM). I was not diagnosed until I was 78. Had no symptoms except palpitations when diagnosed. About nine months later Atrial Fibrillation presented as persistent. My cardiologist and EP at Mayo both said it was there but never showed on holter monitor as AF does not start as persistent. This is the only problem I have had . It took six months of consist AF sometimes with as high as 175 before it was under control. Rate meds did not work, so am now on Dofetilide (Tikosyn) for rhythm control. Has worked except for some breakthrough episodes in the past nine months.

1birdhouse, I have unobstructive hypertrophic cardmyopathy and would like to discovery what other patients experience as far as symptoms angina etc. Have a good morning.

Hi!

Just found this group. I was diagnosed with HOCM in May last year. I look forward to meeting others and sharing tips on living with this diagnosis. 🙂

Yes, I have obstructive HCM

Yes. I have obstructive HCM