HCM getting worse?

Hi there @kay930, and welcome to the Hypertrophic Cardiomyopathy support group on Mayo Clinic Connect.
I'm glad you found this site, and also glad to learn you have an appointment with your cardiologist in two weeks.
It's such a strange disease...you can be fine, and not even know you have HCM and then what seems like suddenly, you start to notice things like "hmm, I'm so short of breath right now..." and you didn't run up any steep mountains, you were just vacuuming and minding your own business.

The good thing, if there is a good thing about having HCM, is that you already know you have it!! That's half the battle. Is your cardiologist up-to-date on all things HCM and HOCM (the obstructive one)?

I was not diagnosed with HCOM until I was 55 and apparently had it my whole life. I was always athletic, energetic, and never struggled with activity or breathing. Pulmonary Fibrosis is rampant in my family, so I went to a pulmonologist to be tested for that disease. He is the one who recommended I see a Cardiologist. I have severe mitral valve regurgitation and HCOM! Taking metropolol and Camzyos has changed my life. It is true that knowing what you have is half the battle! Once you have a drug protocol (or surgery, I suppose) you will feel better. I am so grateful for the medications that help me live a fulfilling life. Good luck to you as you discover what helps you!

I'm 71 and have had symptoms for 20-30 years, gradually worsening. I avoided being honest because I didn't want there to be anything actually wrong as I am fearful of medical interventions and dislike taking medications. Based on a worsening heart murmur, I had an ECHO that showed severe mitral valve regurgitation and other signs of HCOM...I was completely shocked & really fearful at that point. However, I've been on Camzyos since 8/2024 with great results. Heart murmur is barely audible and I rarely have any symptoms. My fears turned out to be groundless and I am so grateful that I now understand why I've felt the way I did. I can only repeat what others emphasize and that is to make sure that you see a cardiologist that is a HCOM specialist.

I am not sure if my cardiologist is up to date on all thing HCM and HOCM. Is there a directory of cardiologists that are?

Hi @kay930 ,

If you go the website for the Hypertrophic Cardiomyopathy Association https://www.4hcm.org, you can find a list of all the COE (Centers of Excellence) for HCM. Or if you join the Association you will have an intake phone call and they will help you find a HCM clinic. It is important to find a cardiologist who sees a high volume of HCM patients. Many of us have to travel to do so, but it is worth it. Good luck.

When my HCM got worse cardiologist recommended surgery. I underwent open heart surgery 2 years ago and it made a huge difference.

Interesting. I was diagnosed with HCM 6 years ago just before I turned 65. I've never heard of Camzyos, don't remember either cardiologist I saw mentioning it either. My symptoms were getting worse so surgery was recommended for me. I underwent open heart surgery in 2023 ( I just turned 71) and it made a huge difference. Is Camzyos a new drug? I'm in Canada, maybe it's not available here.🤔

What an encouragement. I may be started on Mavacamten (Camzyos) soon.
Your success story is wonderful.

Glad that your surgery was successful. I believe Camzyos was approved April/2022 by the US Food & Drug Administration. It had been in trials prior to that, so it is fairly new. There have been other participants on this site from Canada so, I believe it is available there.

Best of luck to you. I was concerned about the potential risks before I started Camzyos; however, the protocol that the doctors have to follow to ensure your safety is very focused and proactive and put any worries I had to rest.