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

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@karukgirl

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!

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Replies to "For me, I noticed immediately that I was no longer racing like my heart was in..."

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?