Hi Colleen, Just joined the group. I'm signed in as @metta I think. I was diagnosed HCM in August of 2008, and have had an ICD since then. Looking forward to being a part of the discussion.

I am 72 years old. About a year ago found out I had obstructive hypertrophic cardiomyopathy. A severe case. I am seeing a Dr who specializes in this. Had to go through a lot, in order to get approved for Camzyos. It is not an easy task to do. Especially when you are really sick. Finally started taking In February 2024. It was not easy getting the medicine. The support team and down to the doctors do not communicate. You have to be your own advocate. At first I felt better. But I started to get side effects. From headaches, nervousness, shaking, to my muscles becoming very weak and painful. Had trouble breathing, coughing I feel like I want to give up. Was told not the Camzyos. Went through many blood test and different doctors to find out I now have hyperthyroidism and possible Graves’ disease. I had been on thyroid medicine , since I was fifty. No problem until 3 months ago. Now this. Was taken off of thyroid medicine,still the same. I feel like I am a piece of meat on an assembly line. Doctors do not listen to there patients. Only will discuss what there specialty is. The pharmaceutical company only cares about 1 thing money. Shame on them. Be honest with the patients , work with them. The results came be better. I am not knocking the drug because there are results but also side effects no one once to talk about.

Hi Colleen,
I have been living with HCM for several years now and really noticed a decrease in my energy and ability to breath especially when walking up hill. I play hockey regularly and the last year or two I have shortened my shifts because of lack of breath.

I am a woodworker and photographer and find now wearing a mask doing woodwork is exhausting after a few hours as the mask restricts the air I am getting into my lungs.

I am planning on doing less live edge woodwork (which I Love doing) and doing more photography where your outdoors with wildlife which is also very exciting.

I was writing to you today to see if there are any cures or operations that I can get so my breathing gets back to normal so i can continue to do the physical activities I enjoy?

John

Hi! I'm Brenda

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.