← Return to Why Camzyos instead of surgery?

Discussion

Why Camzyos instead of surgery?

Hypertrophic Cardiomyopathy (HCM) | Last Active: 6 days ago | Replies (31)

Comment receiving replies
@johnwx

Did you have open heart surgery?

I was diagnosed with HOCM 8 years ago at Mayo Clinic had a checkup there recently. The exercise test is always fun (ha ha). My BP goes down instead of up in the treadmill.

For treatment, my choice is mavacamten (Camzyos) or surgery for symptom management. Right now, my only limitation is on hills, when my body will just say “Stop” and have to let my heart catch up.

Jump to this post


Replies to "Did you have open heart surgery? I was diagnosed with HOCM 8 years ago at Mayo..."

Hello @johnwx,
It looks like you are new to Connect, so welcome aboard!
I am not sure if you are asking me or @joycehocm about the open heart surgery.
I can say that yes, I did. I had a septal and papillary myectomy at the Mayo Clinic in Rochester four years ago. Camzyos was just coming around, and I was not a candidate for this treatment and instead went the way of open heart surgery.
Camzyos can be a miracle treatment for many and for some it is not. And for others like me, I had to chose to go forward with open heart surgery or live a life void of all the things I loved.
I have never looked back and am forever grateful that I chose open heart surgery at the Mayo.
The added bonus is I do not have to take medication for the rest of my life. That is something that was important to me. I do not like taking meds!
It sounds like you have good control of HOCM symptoms and are active. That's wonderful. Life with HOCM can be so weird. One day is good, another day we can barely tie our shoes without gasping for air! When I got to that point I knew I had to do something. There were days I felt like I was going to die!
I just had the VOX exercise stress test a couple of months ago at Mayo...you're right...it's SO FUN! I say that as a joke. It's far from fun but I passed with flying colors (although I thought I would pass out, not pass the test!)
You mention your choices are Camzyos or open heart surgery. Have you had a chance to look around here on Connect? There is so much information on both topics.
When do you see your doctor next?