HCM-ers: Introduce yourself or just say hi

Hi!
My recent Echo results in the summary said "Hypertrophic obstructive cardiomyopathy (HOCM) is suspected"- I do not have any continuous symptoms. Occasionally feel a mild shortness of breath when lying down. I am 75 and have had open heart surgery almost 7 years ago for aortic valve replacement. Because of a "heart block" in which a node was destroyed during the surgery I also received a "dependent" Pacemaker. My Echos have been normal until now. The NP in my cardiologist's office has presecribed a Beta Blocker and I am not on any other drugs. Not ral excited about starting a Beta Blocker. So, I am looking for information on the subject. Thank you.

As indicated I was just diagnosed with HCM in January 2025. I have not changed my exercise regimen for quite sometime and my breathing or other symptoms seem not to have changed a whole bunch. I’m golfing (walking) 9 holes every week. I’m riding my electric bike twice a week for about 60 km, (45 miles). I’m not pushing myself to the same extent I was a year or so ago, but am more than able to keep up. The electric bike is much easier than the hybrid, but I am 76. I was put in touch with a cardiologist here in Edmonton and he comes across really good. He referred me to a Bristol Myers support Group out of Eastern Canada. They will be getting me on the drug soon, I hope. All the costs are covered through Blue Cross and Sun Life. I will report further when I actually get started on Camzyos!

Hi Brandon @mnsportsmanjr, and welcome to Mayo Clinic Connect!
I'm glad you are here and able to share your story with others. Dr Dearani was part of my surgical team as well, and he is considered one of the best in world for septal myectomies.
You are in Minnesota, so I am assuming (which we know what that means!) that you are part of the Hypertrophic Cardiomyopathy clinic at Mayo?
What do you mean you are "right on the edge of being too far gone for Camzyos?" Has your HCM returned or is something else going on with your heart? Forty-two is a youngster, you want to take care of yourself as best you can...

Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect!
Your story sounds like so many of the HCM/HOCM folks on here...some of us tend to go for years with either the wrong diagnosis or no diagnosis.
Have you had a chance to read the Camzyos support group discussions?
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Is your cardiologist up-to-date on all things HCM and Camzyos?
There are several members on Connect from Canada, and it sounds like they have a pretty good system for those who are taking this drug.
Are you active and able to exercise even with HCM?

That sounds worse than it may be. A lot of people have been on Camzyos in this group for years. It lists some possible bad side affects but that don’t mean you’ll have any of them. My husband has been on it for a week, he only feels a little shortness of breath and tiredness. He’s going to switch to taking it at night and see if that’s better. At your age I would suggest you go to a Mayo Clinic and talk to a HCM specialist. Find a doctor there that can do HCM surgery laparoscopic or ASA through the wrist. Where there’s a will there’s a way! Praying you find all the answers you need and be healed.

Hello my name is Brandon, I am 42 years old and I am from Minnesota. I was diagnosed with HCM in 2014, open heart surgery in 2016 at the age of 33. Last month I found out I am right on the edge of being too far gone for Camzyos so they are trying to get me on it as soon as possible to hopefully put off another open heart for several years.

Hi, My name is Al, I’m from Alberta and just got diagnosed with HCM in January 2025 at 76. Hope to start my journey on Camzyos in the next week or so. I think I’ve suffered with this condition for some time but was just diagnosed with HCM recently. My symptoms don’t seem as serious as those of others I have read about in this forum. Here we go………….

Do you take Lisinopril?

I sure appreciate your comments -- I see the Doc again in sept and I will ask about this cough - cause it's bad lol and I will keep researching and learning all i can and reading from this site daily

@karukgirl Debra gave good information here, as always. I've concluded that cardiologists have their special areas. It would in your best interest to ASK/research yours about HCM. I was fortunate to "be assigned" to a cardiologist with interest and experience with HCM when I was first referred with a murmur. On the website of the hospital system here (Albany Med), staff is listed by specialty with their areas of expertise and interest. I was taking verapamil before surgery. No symptoms for years, then suddenly I did with shortness of breath as the main complaint. At that time the verapamil was increased and taken till a few days before surgery. That resulted in a problem not even Metamucil or eating unsalted nuts could solve! I do remember soft coughing and was told it was a sign that my lungs were having difficulty functioning properly. I suggest getting the cough checked out and keep in mind that the effects of HCM vary from person to person.