← Return to Has anyone stopped taking camzyos? I have stopped and feel very sick.

Discussion
Comment receiving replies
@dbrima

I am about to have the septal myectomy in 3 days. I, too, am worried about the back pain. Will I ever feel “normal” again? I currently am off camzyos for surgery preparation and my symptoms are so much worse. I have been off for 4 weeks. I was on camzyos for 8 months - up to 15mg. Camzyos worked a little, I suppose, but not enough to give me a quality of life. I have a little pre-schooler watching me suffer.

Jump to this post


Replies to "I am about to have the septal myectomy in 3 days. I, too, am worried about..."

Try not to worry about the back pain @dbrima! It's pretty common for many people, try instead to focus on getting packed, water your plants if you have them, arrange to have help after you get home, make a comfy nest to curl up in for your return. I thought about you yesterday on my walk and said a prayer for you. Three days goes by so fast, and that is actually a blessing. You have been through such a terrible ordeal with HOCM and Camzyos and now this upcoming surgery is hanging over your head like a dark cloud. But soon it will be all behind you. I know the dread you are feeling right now...I remember it well. The best advice I can offer is to use your thoughts in a positive way. A positive attitude actually can help you through this. Fear can be so controlling, but fear, replaced with positive thoughts, can bring you some peace. Each person is unique and special, and no two will have the exact same response to medication or surgery. So your question "will I ever feel normal again?" depends. After my surgery I felt like I had my life back again. I couldn't believe I no longer had tachycardia, chest pain, head rushes, or shortness of breath. It felt like a miracle! I am praying the same for you. I hope that you use the next three days to do something you enjoy. If you can get out, maybe go to your favorite restaurant. Or if you have a park or walking trail, go visit it. I know you can't do much right now, but treat yourself to something fun that you enjoy. I got my hair cut right before I went so I would look "cute" in ICU. It made me feel better to have good hair. After five days in the hospital my hair wasn't cute anymore, but it gave me something to focus on beforehand besides the dread I was feeling every minute of every day! The dread overtook me until I was able to spin it and turn it positive. I gave it to God. I put it in His hands. Best thing ever. I mentioned to you that I lost my mom right before this, and left for Mayo with my dad on hospice...so it was pretty hard to dig down and look for positive things. But I did, and I am here to share my story with you if it helps.
Do you have to travel to the hospital for your surgery?

You are in my thoughts often. It will be wonderful for you and your child to both have a normal life. You are very brave. Sending you healing wishes.

Hello @dbrima,
I have had you in my prayers and hope that you are doing well after your surgery. It's been about a month now? When you are feeling up to it, can you share your experience? Are you feeling better? Did everything go well for you?