Reprinted with permission from https://fabioneedsakidney.com/f/dialysis-schmyalis. Originally published on April 21, 2023.
Well people... dialysis sucks. I really should say something more positive, because I am very, very lucky. I am lucky to be able to successfully go on at home peritoneal dialysis, which does not involve needles, and which allows me to dialyze at home every night in bed, rather than having to go to some dialysis center.
And it is very do-able.
And it still sucks. I think a lot of us who have chronic illness put a brave face on it, and just get on with things. I know I do. But sometimes you just have to vent. And for all of its miraculousness, having to hook up to a dialysis machine every night-- no matter how portable, no matter how easy, no matter how side-effect free-- just blows.
This is my screen every night:
Now, as charmed as any girl would be by watching the pee flow out of her abdomen and into a bag at the side of her bed (mmm mmm good), it does do a number on your body image. The machine is loud, hums unexpectedly in the middle of the night, my “cord” (I swear it feels like an umbilical cord, since it does extend right out of my abdomen) is long enough to reach the refrigerator, but not long enough to reach the cat food.
It’s a pain in the a**.
I also have a cat who believes that the machine is purring at him. At least that’s our best guess. He cannot get enough of the thing.
Seeing as how there is literally such a thing as “Cat induced peritonitis” (oh good), and cats are not allowed on or near one’s dialysis: machine, supplies, lines, bags, connections, access port (in your abdomen), this is all a bit of a problem. We have gone to quite creative lengths to try to resolve the problem... including dialysis lines wrapped around doorknobs, strung in the air above cat reach and styrofoam tubing around dialysis lines to prevent chewing of same. Well, I have gone to creative lengths to prevent the problem. He has gone to creative lengths to maintain it. It’s a team effort. :-)
The biggest problem, however, is the monotony and relentlessness of it. Every. Single. Night. connecting to a machine that you cannot disconnect from (without significant reason and effort), and the hour (yup) it takes to set it up every night and break it down every morning? Pretty tiresome. And tirING. It is one of my favorite ironies of the medical system that they do a surgery, put a tube into your side, say, “Don’t ever lift anything over 20 lbs while you have this port in you--it can ruin it and give you a hernia,” and then they ship you dozens, neigh volumes... oodles... of 40lb boxes of dialysis solution to keep in your house. Every night, I lug 2 five liter bags of dialysis solution (basically sugar water) from where it is stored, to hook it up to a machine.... so pick up your favorite five bottles of 2 liter soda and carry them from room to room together to get a feel for it.
It’s doable. But you don’t wanna do it every night. So anybody out there feeling like you were born with one too many kidneys.... I will happily take one off of your hands! And for any dialysis patients out there reading this: I feel you!
In the meantime, however, I am grateful for the life saving technology that is allowing me to function, and be able to get up and get out into the world every day in a way I would not be able to without it.