I was dx'd 4-2023 and have worsened since.

Posted by nurselady79 @nurselady79, Apr 11 2:43pm

In May 2023 i was diagnosed with HOCM. Started metoprolol then moved to Mevacamten. I also have severe reflux with 3 hiatal hernia surgeries, the 3rd having had multiple serious complications.
Since then, my heart is so much worse. My resting gradient at its low was 33 and high at 90. My peak gradient goes from 60-119.
I went to Mayo in March '24 and was told i needed a septal myectomy. I am having this done in May. I believe them as i have been on the Camzyos since November with no improvement in any symptoms, especially when i eat. The pain is so severe, i feel like I'm having a heart attack. Especially in the evening. does anyone do this? 🙁

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

maree56 | @maree56 | Apr 12 12:39am

All the best with your opp you should be a lot better.
I was tested for this opp and replacement of aortic valve but my HCM had gone to far to do the operation .

walkinggirl | @walkinggirl | Apr 12 10:46am

I am sorry to read that you are having a very difficult time. I had a septal myectomy at Mayo in July 2021 and I am so very pleased with the excellent results. I hope it goes as well for you, believe me - it was a scary time, of course - you will be in the very best hands.

Debra, Volunteer Mentor | @karukgirl | Apr 12 10:47am

Welcome to Mayo Connect @nurselady79, I'm glad you found this site.
I'm sorry to hear Camzyos did not work for you and you need to have a septal myectomy. The good news is you are going to be in the best hands in the world at the Mayo Clinic. The care they deliver is unbelievable and you know instinctively you are in the right place for this complex, precision surgery.
I had HOCM and I have HCM now. I had a septal myectomy at Mayo three years ago.
I think we all have many symptoms in common. Not all but seems like a lot. I could not eat a large meal without feeling like something bad was going to happen. I felt awful. Chest pain, heart pounding, neck/head fullness or tightness. That mostly is gone now after the surgery.
Open heart surgery is not something anyone wants to go through, but knowing you are in good hands, some of that pre-op anxiety is alleviated.
Oh, it's still scary! No doubt. But the care you receive is the best ever. From the nurses (who are like earth angels) to the lab/xray tech, to housekeeping to the person you brings your meals...exceptional!
May is right around the corner. If you have any questions you'd like at ask about what to expect, what to pack, what the heck, please feel free to ask away! This is a big decision you are making and many others who have gone through it can share their experience which can perhaps help you.
Are you close to Rochester, or will you be traveling?

dbrima | @dbrima | Apr 16 1:35pm

I am 34. I got diagnosed right after pregnancy. Four years after the diagnosis, I took the second Covid shot and my gradient was at 33. I couldn’t do anything. My son is on the spectrum and I am divorced. No one is as nervous as me. However, once I got to my surgery date, I never felt more optimistic. The relief from the surgery has been great. The surgery pales in comparison to the side effects of OHCM. You can do this. Embrace the opportunity. The diagnosis of OHCM is more frightening than the surgery. I promise you.