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@newtosohcm

I’m appreciating the courageous fellow ‘HCM’ ers who are having heart surgery. Thank you sharing. What I’m faced with is a total knee replacement because of extreme pain with walking, driving, sitting to play piano or just for a meal etc. I’m very concerned that my heat will misbehave under anesthesia now that I’ve been diagnosed with symptomatic obstructive HCM and am on Camzyos (which our local rural docs are not educated about yet). I may have to travel to UCSF (about 275 miles from my home) to get it done. Anyone else out there in a similar situation? I’d love to hear how you did undergoing anesthesia.

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Replies to "I’m appreciating the courageous fellow ‘HCM’ ers who are having heart surgery. Thank you sharing. What..."

Hi there @newtosochm, you ask a valid question.
I can share my experience with you. I had been misdiagnosed by my cardiologist with four different heart conditions before finally being diagnosed with HCOM in 2019. In 2015, I had to have a hysterectomy. I was in a really bad way and it was more than necessary. My doctor had me in for a pre-op visit. She listened to my heart and literally pushed herself away on her little rolly chair and exclaimed in shock there was no way I could have surgery. I had told her I have a mitral valve prolapse and a murmur. She said no anesthesiologist in town would put me under with a heart that sounded like that. My surgery was the next day. She made me go to my cardiologist and get a letter stating I was ok for surgery. I did.
The next day, in the hospital, the anesthesiologist came to my room for a pre-op visit. He told me he could not put me under, my EF and gradient numbers were terrible and I could die!
To say I was frightened is an understatement. My parents were sitting there with me and my mom was freaked out.
He told me he wanted to talk to Dr. Cardiologist first.
Then about 20 minutes later he came back and said Dr. Cardiologist told him I would be fine, just keep me super hydrated and that was it. Dr. Anesthesiologist wanted to err on the side of caution and he put in an arterial line to make him feel better.
I did fine! I had zero problems. And all this is before they even knew what I really had. I hope this helps you face your total knee with a little confidence. I share this to let you know that the medical team taking care of you will have the information they need to keep you safe. They would not operate on you if it was not safe. And I am far from a COE hospital too. UCSF is four hours from where I live. I hope this help you!