Dialysis and ESKD – from my perspective

img_0032So when people hear that I am on dialysis I get a mixed bag of reactions from shock to pity, but mostly I get a lot of questions and confusion. How can someone like me – a seemingly normal 25 year old be on dialysis. Well the answer is simple my kidneys do not work, and that’s just how the cookie crumbles.
One of my *favorite* (sarcasm here) responses is well you don’t look sick. If you are a person who would ever respond with this please do all of society a favor and crawl out of the rock you’ve been living under because there are many chronic illnesses, diseases, and disabilities that people live with everyday even though they don’t “look sick.” Luckily for you, if you’re saying it to me I’m the queen of sass and you’re not going to offend me pretty much ever, and my response to you will most likely be “well I’m actually dying and my kidneys don’t work so that’s cool” and you’ll feel like a big jerk.
Am I actually dying? Technically yes, I’m dying at a faster pace than most people my age, but I’m not necessarily going to die from this. Many people live many many years on dialysis, and healthy dialysis patients who receive a successful transplant will go back to living a “normal” life. Normal is in quotations because what even is normal… all I know is I won’t have to connect to a machine three times a week for 3.5 hours and I won’t feel like crap 98% of the time.
Now you’re probably saying to yourself… wait hold the phone, dialysis takes 3.5 hours and you have to go every Monday, Wednesday and Friday. Well technically, depending on your personal condition hemodialysis can last anywhere from 3 hours to 5 hours and most people go 3 times a week. However, like any medical treatment it’s tailored to each person’s individual needs.
So why does it take so long and what does it do? Well basically they use a machine as an artificial kidney. Which means the machine filters your blood, and removes the toxins.
So if you go to dialysis, you should be completely fine right? Well… technically yes I’m completely fine in the sense that I’m living and can go about my typical activities of daily living indepently. However this does not mean that I always, or ever feel “completely fine.”
Actually, I feel like garbage most of the time, but I used to feel like garbage that got spit out of the garbage truck, picked over by vultures and run over by a semi truck so this is a major improvement to how I felt pre dialysis. Not to mention nobody wants to hear about how crappy I feel on a constant basis including myself so I just try not to think about it and go on.
So what does it feel like?? Dialysis literally feels like nothing… 3.5 hours of being bored and sitting in a chair and trying not to move so you don’t make the machine alarms go off which is SO annoying. However you can get some pretty brutal side effects including but not limited to; drop in blood pressure, nausea, vomiting, diarrhea, leg cramps, fatigue, and muscle pain. Most of these symptoms are also side effects of phosphorus binders, which are pills that most people on dialysis have to take with EVERYTHING they eat and sometimes drink too (RIP Dr. Pepper it was nice knowing you) because pretty much everything we eat as Americans has phosphorus in it, and your kidneys break down phosphorus. If you don’t take these and have high phosphorous you can harden your heart, make your bones brittle and do other permanent damage to your body.
I could go on about dialysis for literally days, so I recommend if you want to know all the technicalities and details behind it, google it. But basically this is me saying to all of you, in my opinion, dialysis is WAY better than the alternative (aka dying a slow death by going septic) but it is also not fun by any means.

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