← Return to HCM-ers: Introduce yourself or just say hi

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@karukgirl

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi @joanallione, I see you are new around here...welcome!
Have you poked around in the Camzyos group? There is a lot of information this group shares with each other and it's a good place to find answers to some of your questions.
I had HOCM until I had open heart surgery (septal myectomy) at Mayo Clinic/Rochester nearly four years ago. I found your comment about moving from the mountains interesting. I have always been an active person and hiking with one of my girl friends was a favorite pastime of mine. Even though our mountains are not like the mountains in CO, we'd be around 7,000/8,000 elevation and I felt like I was going to die! It's hard on a hypertrophic heart sometimes.
I am glad you like your doctor and it sounds like she is knowledgeable about Camzyos. Any drug has side effects. And we would probably not take any of them if we only went by what could happen...but the benefits can outweigh the risk too. HOCM is a weird condition. There are so many variables and no two people are alike. But we do share a lot in common as well.
Do your research and be well informed, then make your decision along with your doctor. Sometimes it takes more than one opinion to find the right fit you feel comfortable with. Are you able to be active physically with your HOCM?

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Replies to "https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/ Hi @joanallione, I see you are new around here...welcome! Have you poked around in the..."

Does that mean that once a septal myectomy has been performed one no longer has HOCM? I have just been told after about 15 yrs that HOCM isn’t really my problem as thickening is 1.6mm too small to operate on but my mitral valve is the problem as valsalva is over 100 upon activity. Waiting for minimally invasive mitral repair or replacement. So all this time I feel I have been mislead. I am not that bad a case and function normally but mornings are the worst for lack of energy and also exhaustion after eating,
Now I know why Camzyos made me feel awful it was the wrong drug for me! Happy though that it’s a miracle worker for some people. Keep well all.,