HCM-ers: Introduce yourself or just say hi

@bigheart12345
Are you taking camzyos?

Thank you for the invitation to this group. I first learned I had HCM 7 years ago. It has been treated with drugs but a recent increase in medication drove my blood pressure so low, I spent 5 days in the hospital. The good news is new tests have given more information, and I will be seeing an HCM specialist next month.

@debrasheila no mine isn't obstructive.

Hi @diane2601, and welcome to Mayo Clinic Connect!
How scary that must have been to be in the hospital for five days with low BP! The beta/calcium channel blockers taken to control HCM symptoms certainly do come with side effects.

Yet how wonderful you are able to see an HCM specialist next month. That is so important. Have you had a chance to read up on HCM and learned as much as you can about what you have?

I'm 59 and was diagnosed with HCM with LVOT obstruction in September when a heart murmur was detected during an appointment for a laceration. I had assumed my lightheadedness was all related to chronic sinusitis and allergies. I had some upper back (between my shoulder blades) and chest soreness which I attributed to posture/lack of upper body strength. I did notice that yard work made me much more tired this summer than the summer before. I exercised quite a bit prior to my diagnosis and I have an appointment with the Sports Cardiology Clinic and Cardiophysiologist coming up to go over my stress Echo with me and provide me with guidance on exercise going forward. I started Cardizem which has improved my BP tremendously. I was on Lisinopril prior to the diagnosis, but it wasn't working. A few weeks after the Cardizem start my chest soreness/tightness and pain between shoulder blades is mostly absent. I still get lightheaded from time to time. I'm not in quite as much of a panic now regarding the diagnosis as I was initially. Still a little nerve wracking as my symptoms were so gradual I just thought that's what it felt like to be me. I was really surprised by the diagnosis. Going through genetic testing now.

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?

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.

@cpro10 welcome!!

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!!

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?