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?