This is my second Kidney Disease AMA, the first one was much more well received then I expected, and I found was a good starting point for information for people new to the world of Kidney Disease. Here is a link to the first AMA https://www.reddit.com/r/IAmA/comments/36zcm7/i_have_end_stage_kidney_disease_i_do_home_hemo/

Firstly I am not a medical professional but I can provide insight in the process of Dialysis and the day to day struggle of Kidney Disease. Feel free to ask me anything, and I hope to be of some insight to people unsure of what lies ahead when hearing they Kidney Disease.

Here is my proof: http://imgur.com/3aXtt2j

A short bio of myself: I was born with something called Spino Bifta Oculta, basically this meant that the message would not get to my brain that my bladder was full, by age 5 I was having repeated UTIs that my family doctor was ignoring. At this point my ureters burst and all the pee in my bladder went backwards up into my kidneys and severly damaged them. At age 5 I had about 50% kidney function, this lasted until around age 20 when my function fell to almost nothing. Luckily my brother offered to give me a kidney, the kidney he gave me lasted 7 years, and here I am today on home hemo dialysis. I have also been on peritoneal dialysis and hospital hemo, so I have some expierence with them. Please feel free to ask me anything, even if it was asked before.
Here are some links for kidney foundations Canada: http://www.kidney.ca/ USA: https://www.kidney.org/ International: http://www.ifkf.org/

Comments: 77 • Responses: 15  • Date: 

honkeygrandmabetripp92 karma

I am A+ and have two working kidneys, do you want one?

rapsjk421 karma

Thank you for the offer, but I think it would be strange getting kidney from a stranger over the internet.

Prophet_Thanatos12 karma

Current med student here, I see that you indicated your current medical staff are awesome. What do they do that makes you feel better/happier and makes your life better? Also, is there anything you wish they would do for you that they don't?

rapsjk410 karma

The main thing they do that makes me happy is that they take my life into consideration, they schedule appointments around my work, they make sure I am happy with how Dialysis is going. And the doctors have the best bed side manner I have ever experienced. The centre where I am out of probably has about 25 full time nephrologists and every single one I have met have been the nicest most kind doctors.

M153RY10 karma

How long do you have to stay hooked up to the machine? And what do you do with that time?

rapsjk415 karma

So I do 4 Hours every other day, and I do various things like play video games, read, watch TV or right now I am doing an AMA while hooked up!

M153RY3 karma

What kind of video games do you play?

rapsjk43 karma

all kinds, I have been mostly playing NBa 2K16 on my xbox lately.

guitarnoir8 karma

My good friend and housemate was in pretty much you exact medical position. I'll say to everyone reading this that someone in your position has to constantly work to balance all the factors like meds, and therapy and diet. It's a bit like walking a tight-rope, and if something gets out of balance, one can end-up in a diabetic coma.

It's pretty much a fulltime job staying as healthy as possible. In the end---just as he was making arrangements to go overseas for a second transplant--I lost me friend to a series of heart attacks. He had planned on leaving the country because he was not a good candidate to receive a second transplant, but in some countries, money makes you a good candidate.

Have you ever considered going the India or China route for another transplant?

I just wanted to acknowledge how much work you are doing to stay alive. The best of luck to you.

rapsjk45 karma

No I haven't considered that, I have really great doctors here, and I am currently on the transplant list. I would be too fearful that something could go wrong, and there is a lot of follow up appointments to make sure your new kindey is working, do you go overseas for that them, or do you show up to your local nephrologist and be like so I got this sketchy kidney, please look after me. But I guess, people will do what they need to survive.

Joeskyyy4 karma

Keep fighting the good fight, man! I've got got a severe kidney disease called Cystinuria, and only one kidney, so I know the pain of trying your hardest to keep those suckers healthy only to have them just decide they hate you one day. Fortunately, I've avoided dialysis so far, so that leads into my question:

What do you do to pass the time during dialysis? I know it can be a pretty draining (no pun intended) process to sit through.

rapsjk42 karma

I usually just play videogames, read, or watch TV

Hope4994 karma

A friend of mine has no kidney function, as is not eligible for a transplant, she needs daily dialysis...she doesn't tell me much about it, but is daily dialysis going to keep her okay?

rapsjk42 karma

So as long she follows the routine set out by her doctors, Dialysis should sustain her for a very long, healthy and happy life.

travisthemonkey4 karma

What's your life expectancy without a new kidney?

rapsjk48 karma

I can live a long healthy life on dialysis, it will in the end probably remove some years off of my life, but all and all Kidney failure of all your organs is probably one of the best to have due to dialysis.

Pafon1234 karma

If you you are not going to get a kidney, does not mean that you are gonna die right?(i hope youre gonna get one) You just have to go through the blood cleaning procedure every other day. Did i get this right?

rapsjk45 karma

So Dialysis can keep me alive indefinitely, but a kidney is the best possible outcome for my longevity.

turquiosekitten3 karma

My fiance is on peritoneal dialysis right now. It's his second time on it and hes also been on hemo dialysis. No transplant as of yet, not that we're not trying. He has a genetic form of kidney failure known as Alport Syndrome (I'd link to it but on phone) and there's too likely a chance that a sibling or relative might have it as well and just continue the cycle. I know what it's like and hes on reddit as well if you ever want to pm sometime or anything. Thank you for the AMA and spreading the word on this, not many people understand what it means when we tell them. :)

Now do you hate phosphorus binders as much as my fiance or is that just exclusive to him? Do you still need to take binders now that you're on hemo? For my fiance it pulled off phosphorus much easier than PD does. And did you have any tricks to remembering to take your binders if you did take them?

rapsjk45 karma

I am still on phosphate binders, for anyone reading this wondering what they are, I take two calcium pills before each meal to bind the phosphate in the meal. Dialysis does a great job of removing most things that the kidney usually does but phosphate is one the things that it doesnt remove well, so you have to watch you diet and take the binders to make sure it doesnt get to high. People who do hemo dialysis everyday often can stop the binders but due to me only doing it every other I still take them.

rapsjk44 karma

Oh and I find them very hard to remember to take too! My wife usually has to remind me.

auntiepink3 karma

Why did you switch to hemo? I'm on PD and I'm terrified every time I have to do a Kt/v to check my clearance rate.

Do you have a port or do you have to insert needles into yourself every time?

rapsjk47 karma

PD just never worked well for me, I never got the clearances that I needed on PD and just sorta always felt crappy. I have fistula that I put needles in myself every time I dialylize. The needles really aren't that bad, I actually put dull needles in everytime, because I use the button hole technique, where I insert the needles in the same spot everytime and the needle just sort of follows the developed tunnel.

bofosho243 karma

How does dialysis work? How/where are you hooked up? Thanks for your time!

rapsjk43 karma

So the dialysis machine takes blood out of my fistula, which is an artery and vein surgically combined to increase blood flow and passes that blood through a filter that removes many of the bad things out of my blood that the kidneys would have previously removed and pumps that clean blood back into my fistula. I am currently hooked up to the machine sitting in my living room.

vickymarie042 karma

Hope it's okay to ask you this, but are you afraid of death? And what is your belief of what happens when you die? Thanks

rapsjk49 karma

I am afraid of death, in that I don't want to die now, I want to see my daughter grow up , she is 4, and I want to grow old. I am Christian so I believe that I will go to heaven when I die.

Shurgosa-4 karma

How do you think you got kidney disease? too much sugar? too much salt?

rapsjk43 karma

No, mine was caused by a disease called spino bifta oculta that caused my bladder not to empty properly and all the pee in my bladder went backwards up into my kidney and damaged them.