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Hi everyone!
I’m new to this group and after reading @mmicahk posts and worries about surgery I feel so seen. I’m 41 and was diagnosed with obstructive HCM in 2023 at 39, although I’ve had some weird symptoms like super high heart rate two years prior, but I was misdiagnosed for almost two years. I felt like my world came crashing down when they told me “what I had”. It took me almost a year to get to the point of them diagnosing me and now another year (from May 2024 to April 2025) to decide what the best course of action is for me. I have been mentally and physically preparing myself for the septal myectomy surgery for the last six months (Oct 2024 to March 2025) as it was scheduled for March, but was later cancelled as they said “I am not a viable candidate anymore” due to me being overweight. I am from Slovenia and was supposed to go to Italy to have the operation as our country is so small it doesn’t have specialised surgeons to do the operation. I was so dissapointed I can’t even describe it. I was deliberating having the surgery or not in the first place but then decided to have it while younger to prevent anything serious happening in the future, same as @mmicahk commented. And now they just switched it out on me and put me on Camzyos which quite frankly also scares me. My cardiologist is a weird character that hasn’t explained much about the drug and did not even tell me if I should continue with my beta blockers as both meds lower contractibility and heart rate. I don’t exactly want to drop dead, excuse my cander, from taking some pills.
I feel for anyone on here who is going through the same so much, as it’s really scary and I just feel like I have so much that I still want to do in life and I want to feel better, bit I’m also worried I don’t put myself in the fast lane for heart failure.
Replies to "Hi everyone! I’m new to this group and after reading @mmicahk posts and worries about surgery..."
@bilingual84 I'm sorry to hear you've been going through this. I'm glad that my posts/story have given some comfort that you're not alone on your journey.
I've read through so many stories and I think the reality is that everyone's journey has been different.
I look back to a year ago when I was diagnosed and it has been quite the whirlwind year for me. I can only imagine the challenge you've gone through mentally preparing for surgery, only to find out that it was cancelled.
I was personally terrified of Camzyos when originally approached with it as a possible option. I would say that even though I'm not ready yet (and my symptoms don't warrant it), I have warmed up to myosin inhibitors like Camzyos being a potential for me in the future. Take a look at some other posts on the forum about Camzyos--it has helped a lot of people. I even heard that they decreased the amount of echos needed now in the maintenance phase after more study. Camzyos helped @brumasterj become active again as he prepares for surgery--he could probably share more about his experience.
If you aren't receiving the care you need, you may want to consider joining and/or reaching out to HCMA (Hypertrophic Cardiomyopathy Association). They are a great organization with a lot of information and have helped guide me on my patient journey. I believe they do work overseas too so maybe they know of a specialist they can refer you to visit that can help on your side of the world.
You're not alone. Are your symptoms affecting your quality of life right now, or are they still just strange and noticeable, like mine?
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Hello and welcome to Mayo Clinic Connect @bilingual84
I'm so glad you found this site. You certainly have had some terrible setbacks!
Your story has so many components of many of our stories:
Taking years to learn what you really have, having surgery canceled, taking meds you don't want to, not feeling heard and just told to take Camzyos.
You are being heard here! And I/we feel your distress and fear.
Being young is a factor on your side. If the weight is an issue, this is in your control, yes?
As far as the Camzyos program in Slovenia, I have even less value I can add, but I can ask you this...are you able to look at the Camzyos site?
This is the site online for patients (US? International? I don't know!)
https://www.camzyos.com/
Perhaps you can find some information to ease your mind a little.
Have you started Camzyos?
When do you see your "character" Cardiologist next?