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

That was very encouraging information @pnwman19, thank you for sharing that, and Welcome to Mayo Connect. I'm so happy to hear that everything went well for you both before and after your open heart surgery. I had mine at Mayo Clinic too, and even though it's not a fun experience at all, being at the world's finest facility truly makes a difference. The doctors, nurses, transporters, housekeeping, everyone...make a difficult situation so much better. The care could not be better, and it really helps in recovery. How are you feeling now? Have you noticed that each day you get a little better?

Absolutely!
And I have to note, I’m a harsh critic of medical staff, but the whole team: nurses, ICU team, Dr.’s, Surgeon, everyone, exceeded my expectations at Mayo Rochester. I promise you’re in good hands.

May I ask if you feel better after the septal myectomy . I am 2 weeks from surgery and withdrawal from camzyos is done.
Thanks.

Thanks!
I totally agree with everything you said.
I'm doing well overall. My recovery has been steady, slow but steady. No complications. I'm under 40 and was/am in very good health otherwise, so I think that has helped the recovery as well. Each day definitely gets a little better. I'm almost at 8 weeks post op currently. I've been walking a lot since the week 1 mark, and that totally helps everything out. Majority of back pain, shoulder pains are gone, sternum is just about healed up. I just started cardiac rehab yesterday.

The main item I want to improve is my breathing, it's not horrible, but once I start exerting myself (walking hills, etc.), I am getting some shortness of breath. I can't tell if it's just still anxiety from issues with shortness of breath before surgery or just still recovering, or a combo. I'm working on it daily though.

@dbrima this is overall how I'm doing and how I currently feel. Do notice several areas where the surgery has already helped.

I am under 40 as well. Terrified to wake up with the tubes, etc. camzyos didn’t work for either of us. I have a little son and he will watch me recuperate. I was hoping he wouldn’t see too much. Did you feel the instant relief some people describe after a septal myectomy? At this point, a part of me is looking forward to surgery as I haven’t really lived in a year.

For me, I noticed immediately that I was no longer racing like my heart was in the fast lane doing 125mph and I wasn't gasping for air. It was so odd, since I had felt so bad for so long. I was told by Dr. Dearani that it would take about six to seven months for the heart to heal completely...so yes, there is instant relief from the HOCM symptoms, but your little heart is still trying to heal from the inside with no light, always moving and it just takes time. The bulk of recovery is different for everyone, which I think is like for any big surgery, 6-8 weeks. I think I mentioned to you that I was up and walking as much as I could a week or so after I got home. And since I was tasked with the death of my dad and all his arrangements, I was really distracted and didn't get to focus on my own circumstances, I had my dad to still take care of.
ICU is intense. Hence the name Intensive Care Unit. Things happen each day. Catheter comes out. A new tube is taken out, a new machine is discontinued, chest tubes come out, wound vac comes off. And even though you feel like you were hit by a truck, it gets easier each day.
The pillows are like rocks, the bed is horribly uncomfortable, they come check on you at all hours of the night and day, they make you walk, and then walk some more, you never sleep, and you are SO ready to go home as soon as you can. I think being in really good shape prior makes a huge difference. Your young age is on your side and getting this done and over with is going to be such a huge relief for you.
The sternal wound is something you will naturally feel protective of. You won't let anybody near it. You don't want anything touching it. It was stingy in the shower for about ten days and then it was not so sensitive. They do not want you putting any lotions, creams, ointments or anything on that wound. They want it to air dry. There are no external stiches, just one internal stich that dissolves on its own over a few weeks. So you can't cover it much except in a nice soft tee shirt maybe. In my case, the wound was SUPER sensitive and I couldn't stand anything touching it. So I went to Walmart and bought some V-neck tee shirts so nothing touched it.
After about two weeks it's much easier to get in and out of everything. The car, The couch, The bed, the chair. But it is a big surgery and most everyone gets blood loss anemia, and needs to take iron for awhile. Pleural effusions are common too and that obnoxious "incentive" spirometer, which you will hate, is really your friend. And like @pnwman19 mentioned, there is back pain, between the shoulders sometimes. A lot of times actually. And it can take a lonnnnng time to go away. It took mine a year! Some are sooner, some even longer. So don't be surprised by that.
It is amazing how strong we really are. To go through what you are right now, facing open heart surgery, and then to have the scars to prove you did it. Your little guy may be curious and perhaps scared a little by the sternal wound, but you will look like his mommy, so that is comforting.
They will most likely go over all the things to expect before, during and after the surgery. Your support person will be involved too, and they are kept informed and educated on what to expect to see after you get out of surgery. Having a support person is crucial in recovery. I hope your mom is there to help? I can say, with authority, that the build up to open heart surgery was way bigger than the actual event. I was so scared. I worried I would die. I made sure I had all my "affairs" in order. I was going through a divorce after 31 years of marriage at the same time as my mom died, my dad died and I had open heart surgery. You WILL get through this!!! And when you get home from the hospital, you will begin a new life without HOCM. Hallelujah! You will still have the disease, HCM, but the horrible obstruction is gone for good. And that's a good thing.
I didn't mean to go on and on, and I hope what I have shared doesn't freak you out more!!! I just want you to be educated as best you can and go into this knowing you are already stronger than you ever knew you were. You are facing the biggest surgery, and made the decision to go for it. So I shared all the details I could think of, hoping that knowing them will make it easier. No surprises! No sugar coating! You are strong!! I'm here and listening, and will virtually hold your hand whenever you need it!

Thank you. Did you leave the house at the beginning? Can I leave the house? Currently I am a lump on the sofa, but with sore shoulders and swelling, am I home bound?

I didn't have a choice. My dad died three days after I got home from Rochester. I didn't get a chance to do otherwise. I know right now you are suffering with the terrible side effects of what Camzyos did to your heart and body...and that may take time to go away. Hopefully in the two weeks before you have surgery it will give your body more time to rid itself of the drug and the awful side effects. I pray that this time will offer you more healing before the actual surgery. To be able to walk around more, get some fresh air, breathe in deeply and focus on positive thoughts and positive results...My only restriction was I was not allowed to drive for one month. They don't want you to disrupt the sternum from healing. But I was able to get out, mostly because I had to, but also to be able to walk on our River Trail. There was a lifting restriction too, nothing over 10 pounds. My purse was about as much as I picked up. Do you have an appointment with the surgeon?

I'm looking into surgery at Mayo since my HOCM is worsening and Camzyos, for me, is not the answer I'd hoped it would be. The info you provided is invaluable. The time you took to include such incredibly helpful details is priceless. You have survived so much in such a short time.
A question that would help my understanding is if the back pain that took a year to resolve was sharp, stabbing sensation that happened with movement or a dull ache that was always there? Was there anything that helped?

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.