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

Oh @quinn! I'm sorry the Camzyos hasn't worked for you...and thank you from the bottom of my hypertrophic heart for your kind words. It means so much to me that I may have helped someone else on this HCM path. The Mayo in Rochester is truly the best in the world, but I am biased 🙂
The care is amazing. Every department, clinic, even the library in the basement of the Gonda were staffed with kind, friendly, helpful people and I know you will be in the best hands possible.
The back pain: I had it in the hospital. It was a sharp, take-take-your-breath-away kind of pain. But I could move to make it stop. What the nurses explained is there is a lot of "torque" for lack of better word, in between your shoulder blades during surgery and that area reacts by not being happy. Standing, sitting, walking, it would be there. If I put my arms up in the air, it would ease it right away...but I looked funny walking the trail like that! I hope I didn't make it sound like a hideous, horrible thing. It was not fun, but I could deal with it. It got better and better, and at around a year it went away. Some folks, no problem. Some folks get it. I wonder if size has anything to do with it? Maybe smaller people get it worse? Advil helped as well. I took just one a day. So getting my arm or arms up over my head and Advil worked. The upside to going through this surgery is you have your life back right away. The recovery is not fun but it's very doable, and like any major surgery, the magical 6-8 weeks is pretty much spot on. You have been through a lot too, and the blessing is you at least know what direction you are going, and the surgery is permanent...no more wondering about Camzyos anymore. Please, feel free to ask me anything that you can think of. I am honored to be able to help.
When are you thinking your surgery may be?

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.

Hi Karukgirl,
I don't have a surgery date yet. I've asked a nurse with Jeffrey Geske to get back to me with answers to a few questions about complications following septal myectomy surgery for someone like me, a 71-year-old female. Once my husband and I have digested that info we will decide together if I should schedule the workup and surgery. I'm told these can happen on the same trip. I'm in Colorado. There's a new COE at University of Colorado in Aurora but they haven't done the volume that Mayo has so I will fly to Rochester if I proceed. Thank you again for the specifics about your experience. So helpful!

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

I ran across an excellent series of posts about who to contact for patient services and where to stay and eat while in Rochester but of course now I can't find it. Thought I would look at those posts this weekend since I can't contact the RN or docs. Please guide me to the right threads when you can.

Hi @quinn, I will poke around and also ask others for guidance where to find the information we are looking for. Then we will both know!

Hi @quinn and @karukgirl - Is this the post you were looking for?

--- Concierge services: Navigating your Mayo Clinic visit: https://connect.mayoclinic.org/blog/mayo-clinic-advocates/newsfeed-post/concierge-services-navigating-your-mayo-clinic-visit/

Thank you so much!
I hope this is what @quinn was looking for. I'm going to bookmark it!

Hi @quinn, I think you may be referring the the Visiting Mayo Clinic support group here:
- Visiting Mayo Clinic support group https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

In this group, members share their tips and experiences at Mayo Clinic, including helpful things like accommodation recommendations, restaurants and things to do while at Mayo. You'll also find help with downloading the patient portal, how to prepare for your first visit, and so much more.

Go to the group and use Search to help you find discussions related to your questions. Can't find your question answered? Then don't hesitate to ask it. @karukgirl @johnbishop or many of the other members here will help you find what you're looking for. 🙂