Connect
← Return to Septal Myectomy Consideration
Discussion
Comment receiving replies
@mmicahk thank you! I do feel less alone when I read comments like yours.
The problem with my cardiologist is not that he’s not good, or that my care isn’t that good, the problem is his doctor/patient relationship which is very mechanical. He is one of those cut and dry scientific types that forgets there is a person behind the disease. But he’s supposed to be good with OHCM so I’m going to stick with him for now.
My symptoms have been affecting my quality of life for the past three years, but last year was the worst. It started with heart palpitations to the point of not being able to fall asleep, being out of breath going up stairs to not being able to walk 200 meters without stopping to take a breath, making excuses to friends and family why I can’t do certain activities. In Nov 2024 I started walking every day and have been for the past 5 months and my echo before I got Camzyos showed improvement. So yay for that.
Thank you for recommending other posts, I will definitely check them out.
How are you with everyday tasks? Do you feel you do things with more difficulty?
Replies to "@mmicahk thank you! I do feel less alone when I read comments like yours. The problem..."
Connect
Well you are definitely on the right site!
As mentioned by so many of us, i was misdiagnosed for years! Im 57 and active mountain biking, hunting, was a runner till i could not run any longer due to symptoms!
I had two back to back heart failures in 2024 first one was misdiagnosed and was told i had pneumonia, 30 days later heart failure was finally diagnosed and said i had LVOTO by the local cardiologist, thankfully their was another doctor attending to me while i was in the hospital and she recommended me getting another opinion without coming out and saying it.
Went to mayo in dec and diagnosed with HCM with severe lvoto was told septal myectomy was best course of action for me, dr put me on camzyos to get me feeling better and stronger while awaiting surgery.
With in 2 weeks i was feeling better and slowly started riding my bike again
Im averaging 130 miles per month right now, but not pushing it hard, camzyos does have its limitations for sure but at least im out doing things!
Surgery scheduled for June im on my last week of camzyos due to they want me off 4-5 weeks prior to surgery!
Camzyos is a miracle drug
I hope you consider it before surgery:)
Please reach out if yku have questions!