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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 20 hours ago | Replies (806)Comment receiving replies
Hi
i was diagnosed with HOCM in 2017 i had to move from the mountains of Colorado to sea level San Diego because of HOCM. I have gotten wildly different gradient readings since then, even at Scripps in La Jolla and UCSF in San Francisco. everything from 40 to 120 theg figured out they were reafing double flows in the really hugh ones . my current cardiologist is Dr Khedraki at Scripps i really like her and she’s recommended Camzyos. im thinking of starting it but a little nervous as its so new and i travel/fly a lot for my work. My body is very sensitive to medication. the warnings are so scary. would like a good support group. currently take metropol 2x 25 daily now.
Replies to "Hi i was diagnosed with HOCM in 2017 i had to move from the mountains of..."
Camzyos changed my life. I am very sensitive to drugs as well. I was nervous to try it and my cardiologist gave me great information to help me feel confident in starting Camzyos. I have been on it for 9 months now and had a few difficult moments when I didn't feel well. I am currently on 15 mg once a day and my Valsalva went from 86 to 19. (lower than 30 is normal) I feel better and am able to walk regularly, read out loud to students without losing my breath and generally function at a higher level. (i used to have to park very close to the entrance of a building, couldn't use the stairs, and absolutely could not walk uphill) I take Metoprolol 75 mg twice a day. I travel a fair amount and my heart feels way better now as i fly. I hope you find the information you need to try Camzyos. It really is a hassle to have an ECHO so often as they track your results, but I have found the effort quite worth my results. Since we have so many similarities, I want to add that I am 61 years old, work full time , do not drink alcohol or take any other drugs except my heart meds. I hope my experience helps you. I find the MAYO clinic blog very helpful on this journey.
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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?