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

Hi there,
I am so sorry that you have gone through such a rough, rough journey with HOCM and Camzyos. While we wait to see if any other members have been taken off Camzyos for any reasons, have you talked to your doctor about what to expect when suddenly stopping like you were advised to do? I would start there for sure. Also, if needed, I would be happy to share my open heart surgery experience with you. If there is anything you want to ask, please do and don't be afraid to ask!!! I have some good tips for you...

I would welcome your tips as I am 3 weeks away from surgery and terrified!

Well...first I would say to you that anyone would be terrified! I was super anxious and tried to not think about it too much. Ha! It was always there in my mind. I prayed. A lot! And I found that that brought me so much peace and acceptance. It was a gift from God, as I put it all in His hands.
I had my surgery at Mayo Rochester. Not sure where you are having yours done?
I was told to have a clean wash cloth and liquid soap for the incision after you get home. Use a fresh one each day. So I went to Ross and got a 12 pack and had them ready to go when I got home. I used Dr. Bronner's peppermint liquid soap. Don't think it matters.
I learned from another member that trying to hook a regular underwire bra is not fun, and she said get a sports bra. I went to TJ Maxx and got two, 2-packs of lounge/sleep bras. They were so awesome. You can't really use your arms much right afterwards, so being able to step into them and pull up was a blessing.
I wore summer dresses as it was July. Something easy to pull on. I took linen pants and t-shirts and a cover up sweater to Rochester for before and after. I packed light because hey...I was going to be wearing a one-size-fits-none hospital gown for 5-7 days. I was in for 5 days and stayed a few days after to go to a post op appointment. I just wore the linen pull on pants and t-shirts and flip flops.
You are kind of swollen after surgery. Water retention. So nothing tight fitting is good idea.
Slip on sandals or flip flops were easy to get on and off.
My taste buds were messed up for a week or so...nothing tasted or sounded good except rice with butter and champagne! Funny diet! But it made me happy.
My guy went out and bought a recliner for me. So sweet. It was an electric chair so I didn't have to struggle to get the recliner to work. I would have survived just fine without it, but it was nice to have the first week.
My sweet little daddy died three days after I got home from Mayo. I had so much going on, that I kind of don't remember recovery being terrible. I had his things to move out of his home, legal stuff, cremation stuff. And it was the first Covid season. I do remember walking a half mile to start about 4 days after I got home. I worked up to a mile shortly after. It helped so much to move around and not be sedentary. I listened to my body. If I was tired, I took a nap. If I felt like walking I did. It was not the horrible nightmare I thought it was going to be. Having my dad die was a huge issue for me. So emotional. I had just lost my mom right before surgery. You are stronger than you ever know you are!
You have endured this trial, and now you have a new path. You have support and I would encourage you to reach out again and again...however many times you need to. I will be praying for you...

Thank you so much. I am on it. Scared, but buying the supplies. I am only 34 .

I was preparing for myectomy a few months ago and decided to try CAMZYOS instead. I understand how nervous you must be. The most effective preparation for me was doing daily meditations that I downloaded from this website: healfaster.com
Dr Peggy Huddleston has a book that goes with the meditations but she also has some videos that are very helpful.

Thank you. That will be helpful. It’s hard to think about anything but the surgery.

As Debra said, it was always on her mind. I had the same experience - it was all I could think about. She found solace in prayer. I found it in meditation and reaching out to friends and family for emotional support. I heard about Dr Huddleston’s work with pre-op patients from a friend in Boston. I was so grateful to replace my fearful thoughts with calming ones. I wish you a peaceful mind and heart!

Hi @dbrima,
I was thinking of you and wondering how you as you prepare for open heart surgery.
Have you been in contact with the surgeon?
Have you got a schedule of all the pre-op tests ?
Have you accepted this path and trust that it's the right one?
Have you found a way to calm your anxious thoughts?
Anyway, I was thinking of you and wanted to reach out and let you know if I can answer any concerns or questions to please do. I will be praying for you. ~Debra

Hi,
I actually recently had a myectomy at Mayo Clinic and was told to stop Camzyos at 3 weeks. I ended up being able to stop at 17 days and was fine going through the surgery. I was also on 15 mg, Camzyos total for almost a year. Can I ask what reason they gave you to come off of the Camzyos at 4 weeks?

I didn’t experience any withdrawal effects at all when I stopped cold Turkey. The drug has a very long half life which can help make quitting abruptly not too difficult. But everyone is different.

Happy to help with any additional questions you may have since I recently went through what you’re going to go through.

Thank you. Since there was not a lot of data, we chose to wait 4 weeks. It’s arbitrary, but so happy to hear that you were able to have surgery after 17 days. I had terrible withdrawal, but it last a week, I feel Greta but have difficulty walking up stairs or only 20 feet. Surgery is in 2 weeks,

Thank you so much. This is encouraging.