HCM-ers: Introduce yourself or just say hi

@bbranin Thanks so much!

@karukgirl, hi Debra, thanks for the welcome. I am quite active and have few limitations. Walking, yoga, light weight resistance exercises are a go. The main tell of my HOCM is how quickly I nod off while reading, listening to podcasts, or other more sedate activities. Before my diagnosis I was wondering if I was narcoleptic.
Making sure I’m alert and refreshed before a long drive is a must. Long winded/monotone friends know not to be offended if I nod off while on the phone.
I’m very pleased with the care and treatment I’m receiving from the team at Mayo. Truly blessed

@ebony3, thanks for the welcome! I am 10 weeks into taking Camzyos. It’s good to hear that you’re doing well on it. My dose was raised to 10mg on my last visit to Mayo. Improvement has been noted & hoping for it to continue.
God bless Ebony!
Celeste

I guess I introduce myself here. My name is Jen. I am 72, only discovered I have HCM in 2012 after I had a heart attack right after a kidney transplant. No other symptoms. I am not out of breath, ejection rates are very good, but blood pressure, pulse are high, and I have AFIB. Today, UCSF says I must get the AV Node Ablation. I understand that if my pacemaker fails, I will then die.
Very depressed. I feel like somehow, I failed. I was always an athlete, ate well, don't smoke or drink and am light on caffeine. I can barely bear the idea of going to the hospital to have my heart function destroyed.

@cpro10 Welcome to the group Celeste. Praying that all goes well with your OHCM. I have OHCM as well , am on Camzyos and am doing OK. I often am not thinking that I have this issue and life goes on. Take care Celeste and God Bless!!

Hello there @cpro10, Celeste, I'm glad you are here and welcome to the HCM group on Mayo Clinic Connect.
That's great that you are connected to a Center of Excellence for you HOCM. What a blessing!
Are you able to be active and exercise with your HOCM?

I wanted to thank all of the members who helped me get my Camzyos covered by my Part D provider. I submitted a Prior Authorization, it was approved and after paying the $2000 the remainder has been covered!!

@cpro10 welcome!!

Hello, I’m Celeste and am looking forward to participating in this group. I have OHCM. I was diagnosed in 2023 & my cardiology team is at Mayo Jacksonville.
Hugs to all.

Hello there @sarahwatkins, it looks like this is your first post...so welcome to Connect!
It is shocking and surprising to learn you have this condition, isn't it?
But once you start to learn more about it, slowly things start coming together and you can start chalking up symptoms you've been having to not just your imagination...but HCM. And now you know you were not crazy!
I'm glad your panic has started to fade and you are moving forward with more testing and appointments for guidance.
You mention you are seeing a Sports Cardiology Clinic and Cardio-physiologist shortly, and I wonder if they are educated in HCM.
That's going to be important as you go forward, not just for exercising advice, but for treatment of symptoms and monitoring your HCM.
HCM is a sneaky condition and can progress slowly or suddenly and you will want an expert you can trust.
Staying hydrated is important with HCM and paying attention to your body. You know you better than anyone, so it's up to you be vigilant and your own best advocate.
Have you read some of the posts here on Connect from other members with HCM?
Are you aware of any physicians that specialize in the treatment of HCM in your area?