HCM-ers: Introduce yourself or just say hi

The high school gym teacher required students to run around the playing field three times. I was so slow that she brought all the other girls back to the gym building while I labored to complete the 3 circles. After a few sessions, she began bringing me in along with the rest of the class. We had an annual day off to climb a mountain, and I had begged faculty to drive me to get to the top. Shoveling snow would also leave me out of breath with a pounding heart. As an adult systems analyst, I would faint every year or two. My M.D. ruled out epilepsy.

In retirement, I ran 5 annual music festivals but became woozy/light headed at the end of the sixth one. I asked a friend to drive my car home and got a ride home with a neighbor. That's when I had a heart attack and the HCM was diagnosed. My surgery was completed in December 2024, as I recall. As of today, July 2026, I'm slowing down.

Hi I’m new. Being tested for HCM. After all the other big test. A cardio MRI has now been requested. I am a very active athletic 73 yr old. Lift weights, resistance machines, walk4 miles 2xs weekly and Pilates once a week. Have always been active. Competive swimmer in college. Have only suffered mild chest tightness after eating and walking uphill. Thought I should get checked out. . Had a full cardio evaluation 7 years ago because my reg doctor thought he heard something. Endocard, stress test, etc. results were that everything was great. But what really confuses me is my total lack of a genetic link. My father died at 65 after a failed brain experimental surgery to arrest Parkinson’s he had no history of heart problems. His brother died at 77 of colon cancer no heart issues. My mother died at 78 of a very rare and aggressive cancer.I have 3 older brothers, oldest died at 90 after loosing his wife, next to oldest died at 84 of Alzheimer’s no history of heart issues. My remaining brother is 80 and is a runner still and.stays very thin. Maternal grandmother died at 97, paternal grandmother died at 102 One grandfather died quite young of tuberculosis. The other grandfather died in his late 60s from liver damage from drinking.. My maternal great grandfather lived to be 92. I know that they found something Concerning when they did the Card. Catheterization. I’m being treated at the University of Pennsylvania. I would like to delay this cardio MRI because we’re going away for about six weeks, but I can’t get a straight answer whether I should delay the MRI that long or not. Sorry for venting all this, but I would like to know what others think.

Hi I’m new. Being tested for HCM. After all the other big test. A cardio MRI has now been requested. I am a very active athletic 73 yr old. Lift weights, resistance machines, walk4 miles 2xs weekly and Pilates once a week. Have always been active. Competive swimmer in college. Have only suffered mild chest tightness after eating and walking uphill. Thought I should get checked out. . Had a full cardio evaluation 7 years ago because my reg doctor thought he heard something. Endocard, stress test, etc. results were that everything was great. But what really confuses me is my total lack of a genetic link. My father died at 65 after a failed brain experimental surgery to arrest Parkinson’s he had no history of heart problems. His brother died at 77 of colon cancer no heart issues. My mother died at 78 of a very rare and aggressive cancer.I have 3 older brothers, oldest died at 90 after loosing his wife, next to oldest died at 84 of Alzheimer’s no history of heart issues. My remaining brother is 80 and is a runner still and.stays very thin. Maternal grandmother died at 97, paternal grandmother died at 102 One grandfather died quite young of tuberculosis. The other grandfather died in his late 60s from liver damage from drinking.. My maternal great grandfather lived to be 92. I know that they found something Concerning when they did the Card. Catheterization. I’m being treated at the University of Pennsylvania. I would like to delay this cardio MRI because we’re going away for about six weeks, but I can’t get a straight answer whether I should delay the MRI that long or not. Sorry for venting all this, but I would like to know what others think.

@hs60marg Welcome to Connect! It seems the discussion has turned to thinking about symptoms of HCM. While none of us planned on having this awful disease, knowing that we do opens a path for treatment and relief. It is quite possible that at least some of your relatives had asymptomatic HCM, many people do. Maybe they were not verbal about some of the symptoms they may have been experiencing. The genetic testing is relatively new, and not all the responsible, naughty genes have been found. Out of 123 that were tested in my DNA in 2022, all were normal, more are discovered as time goes on. It may turn out that HCM is not causing your mild chest tightness, your doctor is thorough and covering all the bases. If you cannot get your cardio MRI before your 6-week absence, may I suggest to at least get an appointment set up. BTW, I never had a cardio MRI until I was at Mayo for my septal myectomy, my diagnosis and monitoring were always done with an echocardiogram. You may wish to ask your doctor why an echocardiogram is not being ordered. Let us know what happens!

@walkinggirl thanks for your reply. It was good to know your information on the genetic factor! When I was brought out from the cardiac catheterization. The doctor asked for an echocardiogram to be done right there and then. The technician came and did a very thorough one. I think it was from this that he recommended the cardio MRI. I have scheduled that as soon as we get back in the country in late October. all of the test data written up by the doctors is in my portal, but it’s written in highly technical medical terms and I really need someone at the University of Penn to interpret a lot of these results for me. Unfortunately, we are three hours away and they will not do a tela medical call outside the state of Pennsylvania and we are in Delaware. I did find out when making this appointment in A for October from the very helpful lady who made the appointment for the MRI that the doctors would have put in a timeframe that it needed to be done by if they were worried about that no timeframe was listed so I think I’m safe and delaying it. Again, I would like to thank you for your very helpful reply. Dean

@hs60marg Thank you for the clear explanation of your treatment so far, Dean. I'm glad you made your appointment, sometimes there is a long waiting time between your phone call and the appointment. We can all identify with your statement about the technical jargon, at appointments, asking for explanations in a layman's language has been my strategy. We encourage Connect particants to find out all they can about their medical condition. In your browser, type Mayo Clinic HCM to read several informational articles on HCM. If the rest of your testing concludes that you have a different condition, you can again type in your browser Mayo Clinic "name of your condition. " How did you decide to seek medical help? Did you start with a cardiologist in Delaware and then have a referral to U of PA?