← Return to Has anyone stopped taking camzyos? I have stopped and feel very sick.
DiscussionHas anyone stopped taking camzyos? I have stopped and feel very sick.
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 29, 2023 | Replies (40)Comment receiving replies
Replies to "Hi Karukgirl, I don't have a surgery date yet. I've asked a nurse with Jeffrey Geske..."
https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
71 sounds young to me! That is my significant others age and he's still a tough guy.
I don't know if you have had a chance to click on the Hypertrophic Cardiomyopathy link at the very top? It will bring up pages and pages (and pages!) of discussion. About surgery, about after surgery, about before surgery...lots of people older than you have gone through this and did tremendous! But we are all different and have different levels of health. Being active and healthy before is of course the best way to go into this.
I did not want open heart surgery. I was so afraid. Camzyos was in trials and I couldn't participate. So it was use Disopyramide forever or surgery. I was told it was like putting the brakes on your heart, but as soon as you stop the heart just goes right back to where it was. My fear, after the many years of being misdiagnosed, was that my heart was now damaged. I was starting to have heart failure. I didn't know what to do! I decided I wanted a chance to get my life back, and made the decision to go forward with the surgery. It's not an easy decision @quinn, and I admire your thoughtful contemplation and careful consideration.
I made two trips back to Rochester from California. One to be officially diagnosed with a host of tests and labs, and the second for the Big Day. That was a pretty full schedule of three days pre-op testing, labs, xrays, cardiac MRI, heart cath. We stayed directly across from St Mary's and it could not have been more convenient. It sounds like you already know you have HOCM and need surgery, so I guess what you heard is correct. Flying was easy. It was not the big deal I manufactured in my over active imagination! I hope you will come back and keep us posted on your journey...big hug!
Debra