HCM-ers: Introduce yourself or just say hi

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.

The two treatments, other than meds, that I was told about were either surgery or non invasive alcohol injection via an artery. Have you had either of those? I was told I wasn't a candidate for the alcohol treatment but surgery a year and a half ago seems to have worked for me. I'm hoping that result lasts.

I was diagnosed with HCM in 2019. I've never heard the term Apical but when I look it up it sounds like the same way my condition was described. I had surgery in March 2023.

Hi Val, it seems we have a few things in common. I have Apical HCM & live in England

Hi,
I regularly use Online Mayo Clinic for my health & medical info.
I have a long standing diagnosis with Apical HCM. I am highly symptomatic despite extensive treatments.

Hi back at you @superkhal, welcome to Mayo Connect. What brings you to this forum? Do you have Hypertrophic Cardiomyopathy? If you do, have you had a chance to read the stories here?

Hi everyone

My name is Don I live in the state of New Jersey just started Kim zoyas I'm in my fourth day of taking the prescription no side effects yet go back in 4 weeks for my first electrocardiogram will keep you posted thank you

Hmm...I had not thought of that. You're so smart!
I actually have an appointment coming up in October in Rochester. Like you said, we have both experienced the Mayo Clinic and know deep down in our little hypertrophic hearts they are the best.
I've recently noticed some symptoms that I didn't give much thought about but when the anesthesiologist heard them he said no way... surgery not happening.
I tried to convince him that these are just typical for HCM after septal myectomy. It caused me to reach out to Cardiology and Dr. Ommen said they are not typical and I need to be evaluated.
Here we go again! The rock and the hard spot. I have no confidence in my local cardiologist, I don't even see him...I see one of his PAs. And I know they are not savvy with HOCM/HCM.
Not like the Mayo!
So here I am, in far, far Northern California, not near any COEs, and contemplating if I should postpone my knee surgery until after I am seen by Mayo. I honestly know the local guys will say I'm fine...but I don't know if they know, you know??

That is a complicated and never-ending, Catch-22! You said that you lived in CA, would it be worth it for you to connect with a cardiologist who specializes in HCM? Perhaps Mayo could make a recommendation or a Californian/Oregonian etc can make a suggestion based on their experience. Travel is annoying, time-consuming and could be expensive, we both went to Rochester MN because they were tops. It could be worth it widening your options.