Yeah, but what does dialysis feel like though?

I often get this question from friends and family, or just random people on the internet. I thought I'd take a few minutes to try to answer it as best as I can articulate. This is just my experience, and how I feel, but as far as I can gather a lot of people experience the same sensations.

Does it hurt?

Actually, there's not too much pain involved, even though it does look pretty horrific. There are needles involved. Big ones that are placed in your arm, but after a while you only feel a little pinch when they go in and as long as they are positioned correctly there shouldn't be too much pain.

Why are you so tired afterwards? You just sit there.

Imagine you've gone on a jog for three and half to four hours. Now, imagine on that jog it was hot and you perspired. You perspired so much that by the time you were done that four hour jog you lost 2 kilograms of fluid from your body. That's roughly how it feels when I am done dialysis, minus the hot part (I'll get into that soon). I feel drained and dry. I cannot just go and guzzle down all the fluid that I lost either. That 2kg of water that came off my body will slowly be put back on as I drink fluids between treatments.

Anyway, the last thing any dialysis patient wants to do after treatment is go out and party. Usually a nap is in order. The effects can be lessened by drinking less between treatments, but even with the minimum fluid gain I get tired.

Why do you always bring a blanket with you to dialysis?

Because I get fricken cold that's why! For the longest time I got cold because I was anemic. A lot of dialysis patients are and there are medicines to help with anemia, but it's always an ongoing issue. Since my anemia as reconciled itself I don't get nearly as cold.

Secondly, as the blood leaves our bodies and runs through the machine and back to us again it can be cooler. Not significantly cooler, but it can be a slight variation from our body temperature and that can be enough to make us take a trip to Brrrrrsville.

Lastly, if it's hot outside and the AC is on this can make me cold, especially if I'm right under a vent. You know how it can be on a hot summer day, when you go into an air conditioned room and get the initial blast of cold air. Then after about 30 minutes you're shivering. It's like that, but amplified.

Do you miss not peeing?

Not really. I try to look at the positive side of things and I'm great on road trips or during long movies. Most patients on long-term dialysis eventually will stop producing urine as their kidney function decreases. For me I just woke up one morning and I didn't have to pee, and then that was it.

What does low blood pressure feel like?

Fuzzy. That is the best word I can think of to describe low blood pressure. The first time you experience it it's hella scary. You feel like just your head is underwater. You can't quite concentrate. It would be hard to read a book or do math problems. That's if it's mild.

If you get a severe drop in blood pressure, that is terrifying. You start to sweat, your pulse increases, the room starts to spin, you feel if you open your mouth vomit might come tumbling out, and you feel on the brink of passing out, if you don't actually pass out that is. I've seen many people pass out at dialysis. You learned to recognize the signs that your BP is dropping and let your nurse know ASAP.

Anything else?

Yes. Dialysis can be miserable. It can be soul crushing. It can be down right depressing. Dialysis is one of the cures for chronic kidney disease, but not the ideal one. The best chance of survival is a kidney transplant.

I know what you're thinking: here she goes again trying to spread the word about organ donation. Well yes I am. It is almost the end of National Donate Life month in the US or BeADonor month here in Ontario and I just wanted to put up the links again about organ donation. Feel free to read up on it and consider signing up to be an organ donor. Oh yeah, and don't forget to tell your family about your wishes.

United States
https://organdonor.gov/index.html

Canada
https://www.beadonor.ca/

United Kingdom
https://www.organdonation.nhs.uk/

L.