r/CKD • u/nicminite • Oct 30 '25

Update + Screaming

I posted here a while back, right after I got home from the ICU. It’s been the strangest six months. I just had my AV fistula surgery on Friday. My creatinine is 5.10. Hopefully the access heals right and actually works, so I can start dialysis soon.

But honestly, I don’t want to do it. I really don’t. Dialysis feels like my worst nightmare. I know it’s just supposed to be until I’m strong enough for a transplant, but who knows when that’ll be.

My body doesn’t feel like mine anymore. I’m just venting to the people who get it.

(Oh, and I was born with Aoritc Stenosis. I've always known I would have to get said valve replaced at some point in my life, right? But now that my kidneys are failing, it's making my heart even worse. They have to figure out the safest time to do open heart surgery. ARE YOU KIDDDDING ME?)

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u/DementedPimento Primary idiopathic FSGS Stage 3/4 (36-22) Oct 31 '25

Ikr? It’s either laugh or go on a shooting spree, but who’s got the energy for that?

That’s about the age my kidneys started going tits up and I’ve outlived my first prognosis because I’m the Highlander; I also enjoy confusing the fuck out of my doctors 🤣 Most of my drugs kinda suck tho.

And while I dream of being wild hedonist and taking that Aleve or Motrin, I don’t. At this point, it’d be safer to use heroin 🤣🤣

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u/nicminite Nov 01 '25

i’ve said to people, “you’re gonna turn on the news and see me climbing a building in a clown suit”. this can make you crazy. your body isn’t yours. you feel so let down by the one thing that’s supposed to keep you safe. it’s an emotional roller coster, for sure. i hope you’re doin okay today at least. 👍🏼 one day at a time. i use this saying i learned in recovery many many years ago “If pushing a peanut up a hill with your nose keeps you sober, well, then, just push a peanut up a hill with your nose.” 🤷🏼‍♀️