HCM-ers: Introduce yourself or just say hi

Morning, I have been a member fir a while now but why do I have to keep signing in everytime?

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.

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?

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.

Hi everyone hopefully things are going well.

I was diagnosed with HCM about 5 years?
My cardiologist is specialist HCM.
two years ago I had two stents
It’s seems my blood pressure often get high
At times.
I was starting new meds Jardiance .
It’s good for HCM ?
I think spoke to Colleen along while ago?
We all have to be positive on this journey
Do keep in touch

I am curious if you have tried to see a different cardiologist. ( get a second opinion) It seems to me you should have answers for shortness of breath and chest pain. I do not believe you should be living with that. Are you a patient at the MAYO clinic? I have been amazed on my own journey how simple medicines and adjustments of the dosage have helped me tremendously. You mention AFIB which is such a scary feeling. Has that been addressed for you at all? I sincerely hope you find a cardiologist who can help you so you can feel better.

Thanks for your response - The first thing I did was check with my doctor's team, then the lab they use, then (Original) Medicare. Different answers, none that I felt was definitive. Did some light research on my own and decided that learning medicare regulations in enough detail was more effort than the cost savings if I get denied. 4 siblings, 6 children, 4 grandchildren. Already ordered the test - just trying to clarify billing. Surprise effect from the Camzyos - I have had difficulty breathing on my back as far back as I can remember and much worse as my HOCM worsened. Oxygen helped but no doctor believed me because my blood oxygen wasn't low enough. When I was on my back during part of my ecoh yesterday I realized that I was breathing without effort. Pleasant surprise.

Hi all looking at reading some of your comments 😊 Thanks

While at the Mayo Clinic for a septal myectomy 7/22, I was referred to the genetic counselors. (Out of 123 genes studied, none were mutated - new ones are found periodically - test again in about 5 years.) To answer your question, contact your insurance company and ask. My #1 NYS top rated Medicare advantage plan covered it in full. If you have descendants, it would be worth doing even if you need to pay out of pocket. My son and grandson had echocardiograms and will need them periodically unless the evasive gene can be found.