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

Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 29, 2023 | Replies (40)
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@dbrima

I am 34. I tried camzyos and was very sick for 7 months. Surgery pain was not as bad as others describe. My numbers are still off with kidneys and potassium. I was on heavy diuretics before surgery, gained 30 pounds during surgery (which is normal) and after 3 weeks still needed diuretics to get off all the water weight. Potassium has been low for a year- sometimes to a crucial level where I was getting potassium infusions. It is still low and so I have been taken off of diuretics. You will feel lousy for a few days and I still don’t feel quite right yet. But nowhere as horrific as some of the adjectives used to describe this surgery. I think the worst part is the anxiety before. This has been unpleasant but not as scary as I went in thinking it would be.

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Replies to "I am 34. I tried camzyos and was very sick for 7 months. Surgery pain was..."
Debra, Volunteer Mentor | @karukgirl | Aug 29, 2023

I am so glad to hear you are home, feeling not as terrible as before the surgery. It's hard for people who have not had open heart surgery to not fear it...and once you go through it, yeah, it's rough, but not hideous torture like we imagine in our minds. It is a big surgery, but the build up is the worst part. It's hard to convey that to those who still face it, and words are only words, but we try our best to be honest, and put others minds at ease. Easier said than done.
Low potassium sounds like it is definitely an issue for you, and I'm sorry you have such difficulty getting that back in order. It sounds like a side effect of the diuretics? Your poor little heart was working so hard, and beginning to fail it sounds like. Mine was beginning to fail too and the water retention was a result of that. But I was no where near the extent you are. I pray you heal quickly and begin a new life without HOCM!
When do you go back for a post-op visit?

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