I have End Stage Kidney Disease and I am Home Hemo Dialysis Patient, Ask Me Anything!

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

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

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?

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.

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

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!

What kind of video games do you play?

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

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.

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.

What's your life expectancy without a new kidney?

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.

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?

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

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.

I usually just play videogames, read, or watch TV

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?

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

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?

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.

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?

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.

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

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

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.

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

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.

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

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.