Hi, Im a 36 yr old dialysis patient with no donors in sight. Ask me anything.

20 years dialysis / kidney transplant guy in Australia here

It's important to understand that while OP's situation is not one that anyone would want to find themselves in, life on dialysis can be more than just the life of the living dead

I managed to father two children during one of my six year stints on dialysis between transplants, also managed to work and be an active father and husband and travel all over the place for work

OP you should consider peritoneal dialysis, it's much more gentle on the body and the fluid and diet restrictions aren't nearly as bad as when you're on haemodialysis (if I want a coffee or a beer, I just have one, don't worry too much about the fluid - some days I get 2.5 litres off via PD)

I did two six year stints on haemo, then when my second transplant failed I chose to do Peritoneal dialysis this time, been doing it for about two years and I have to say it shits all over haemo. No needles, no trips to the unit three times a week (I was actually doing four), just hook up, keep working, then unhook every four hours

You don't get the crappy post dialysis feeling either, because you're dialysing ALL THE TIME

I feel for you dude, but just know that there's one Aussie over here pulling for you, and wanting you to understand that there are options

Thanks, I did peritoneal dialysis for 2 yrs. I had to stop cuz I got peritonitis 6 times, plus pd wasn't cleaning me out very well. I went back to hemodialysis. I'm currently on hemodialysis.

my father is on dialysis and he's like a zombie, and being 52 years old does not help either. at the moment he is not working as all he does is sleep all day and if you leave him in a chair he will fall asleep instantly. i know he goes 3 times a week for 4 hours via a tube in his chest then to his new fistula. he was good for two years then relapsed about 6 months ago where his kidneys only work at about 10 percent. i dont know what to do to help him, he was making 200k 3 years before and now nothing it has made him quite depressed. im not sure how to chear him up and to get him motivated to do a job even if its minimum wage.

Maybe you can donate your kidney to get him off dialysis

Do you think it should be legal for people to sell their kidney? I have no form of reference, but I've always thought it should be legal.

Yes I think it should be legal. Everyone gets paid when a kidney transplant is performed. The doctors, the nurses, the hospital, why shouldn't the kidney donor also be paid, they are doing such a noble thing. I am all for compensating live kidney donors.

How much would you be willing to compensate? Assuming as a recipient you had to pay for one. If this were to be a simple transaction into a medical operation what do you think would be fair? Or do you believe the medical institution should find the donor/seller and be the one to pay them?

I think the us govt should pay kidney donors 50k for their sacrifice. People on dialysis already cost the us govt billions. Paying kidney donors would actually save the govt and tax payers alot of money.

Why should the government pay for it? Just curious—wouldn't it make more sense for the insurance provider to pay for it?

The govt already pays billions for all dialysis treatment in the us. Also along with medications and hospitalizations of renal patients.

I dont, then we would be pressuring the poor to give up their organs for the benefit of the rich. You would see legalized abuse of the system.

So we should ban something that would do good because bad people might abuse it? That sucks.

There would be alot more good then bad that came out of it.

People would be free to donate if they wanted to. No one can force anyone to donate.

Damn, 5 years on Dialysis... that is a long time. My father is going through the same thing. He can't even get on the Donor list though because he had a tumor in his bladder 11 months ago.

I can only imagine how bad this has to be for someone who is only 36.

How did you end up on Dialysis?

When I was 23 I was diagnosed with FSGS. I went into kidney failure at 32.

Being on dialysis is pretty miserable. You feel sick and tired most of the time. You can't pee but you still get urges to go pee. The complications are endless. I've probably been in the hospital over 100 times due to infection or other complications. On dialysis, your not really living, your just existing. Your on life support, without dialysis, you would be dead.

How many times do you have to go? How much do they have to pull off of you? You look healthy so I can only assume that you're watching your liquids.

I go to dialysis MWF for 4 hrs. Usually they pull between 2-4 liters off of me. I don't urinate anymore, so dialysis is the only way I could get fluid out of my body. If I didn't have dialysis I would literally drown from all the fluid overload and die.

I took a patient by ambulance to the hospital once... he was a long time dialysis patient having some complications. He needed the ride and a meetup with a doctor, but wasn't completely immobile or anything.

I remember filling out the paperwork in the little EMS office, getting ready to put the ambulance back in service, but deciding I should pee first. Walked to the ER bathroom - our patient is standing there about to go in. "Hey buddy! Nurses treating you well? Go first, I'll be fine waiting a few more minutes!" He replied - "Son, I haven't urinated in over 8 years. You go ahead in front of me."

I remember at that moment just being mind blown about exactly what it must be like. I've spent time in dialysis centers, I've talked to people going through dialysis, and recovering from transplants. But it didn't hit me until just then how crazy it must be to live with non-functioning kidneys.

/u/Johkim739, take care of yourself. I wish you peace and happiness and hope you can hold onto hope! My question for you - What moment in your life, looking back, brought you the most joy?

Thanks Whitman, I've rode in ambulance a couple of times. I appreciate what you guys do. Yes before I started dialysis, I had no idea that eventually, I wouldn't be able to go pee anymore. That was a pretty big shock. I still urinate a little, like drops, but nothing like before, when I would piss for a few minutes after I drank a big gulp from 7-11. Anyway, probably the happiest moment I had before dialysis was in college. I had written a play and it was performed in the school theater. I enjoyed seeing my work being performed by professional actors.

How does that effect you, not just physically, but the mentality of it. I have an overactive bladder, which means I can go to the toilet up to 20 times a day. The bathroom rules my life, I can't imagine having the urge to go, but not being able to. How does it feel when you've had the dialysis?

Edit: Just to say I know how it feels to need to go but not a lot come out, it's one of the bladder things. I mean how would it feel for nothing to come out, and knowing that you wouldn't be able to have a full stream.

I think I have an over active bladder also. I feel the urge to go pee over 20 times a day also, most of the time though nothing comes out, which is maddeningly frustrating.

How does a person get tested to see if they are a match?

My blood type is B+ I would need a B or O blood type donor. You can call my transplant coordinator at uci medical center in orange, ca at 1-714-456-8441 for a transplant evaluation form if you are interested in getting tested for me, or if you have any questions regarding living donation. Thank you for your interest, I am very grateful.

I always thought that there are more requirements than just the blood type, or is this just a common misconception or just not many requirements for kidney?

You can go here to see the requirements to be a kidney donor. https://www.facebook.com/photo.php?fbid=525985090787858&set=o.352016184820439&type=1&ref=nf

I'm not far from where you are, but I'm A+ =/

If we are not the same blood type, we can enter what is called a kidney swap program. You can google it, if your interested. Thanks

O+ here, would love to donate but cant afford missing 12 Weeks of work.

if you could like and share my kidney page, that would also help me out lot! thanks! https://www.facebook.com/JohnKimsKidneyKampaign?ref=ts&fref=ts

I have Alport Syndrome and while my kidneys are functioning right now (well partially anyway) it is just a matter of time until ESRF sets in. I have known for most of my life that this would someday come and my mother was on dialysis for many years. I don't really have a question but i just wanted to say best of luck to you man. I have seen first hand how hard it is to cope with and I have been preparing my whole life for this eventuality. My only consolation is that if I had been born a generation earlier without the advancements to delay its onset and subsequent dialysis (if needed) I wouldn't even be here right now. I hope you find a donor asap.

EDIT: bad spelling

I heard that if you take baking soda (sodium bicarbonate) it could help delay the onset of esrd. Google it, and good luck. I would do everything I can to avoid dialysis, cuz dialysis is hell.

So in theory, could you exercise like a TON to keep some of those fluids from building up? I'm wondering bc I drink a lot of water throughout the day, and I can't imagine being told to drink less due to possible fluid overload >.>

I can exercise, but i would still have to go to dialysis either way. The only way to keep from fluids building up in my body is to limit the amount I drink.I am told to avoid salty foods and limit my liquids. You can drink alot cuz your kidneys are working, I cannot, cuz my kidneys aren't working.

What's you blood/ tissue type? Also where in the world are you?

I am B+, I live in Los Angeles ca

I'm A-... I'd be willing to donate one of mine if we could have been a match. I'm in Australia. I don't think I'd meet the criteria to donate either, I'm kinda fat. :S

Thank you for your interest. I would only be able to accept from donors that are in the USA. The logistics of accepting from a donor outside the USA would be too complicated. Thank you

Did you come on reddit seeking a donor? I ask this seeing your account is only a day old..

Yes, I. Searching for a kidney donor. And I also wanted to tell my story. If anything to educate the public on the dire organ shortage, and to ask people to please sign their organ donor cards. It does help so many people in need.

So you say but can you prove it?

You can go here to read my story and see pictures of me on dialysis https://www.facebook.com/JohnKimsKidneyKampaign?ref=ts&fref=ts

I'm assuming no one in your family is a match. Do you have a rare blood type, or is the supply of kidneys low?

My sister got tested. She can't donate due to high blood pressure. I have a somewhat rare blood type. I am B+. The supply of kidneys is low. Many people do not sign up to be an organ donor. There are over 100k people waiting in the US for a kidney. 100k people are on dialysis, 20 people die waiting for a kidney everyday.

For ignorant people like me what kind of tests/match is needed to be a doner.

First there would be a blood test. If that checks out, there would be other tests to test your overall health. I've done all the tests myself, it's like a physical.

Hello, Thanks for doing the AMA.
How did they find out you had FSGS? Did you have complications? What were you doing when your kidneys failed?

I hope you find someone to donate. I'll keep you in my intentions and vision you in perfect health. <3

I first noticed my ankles were swollen. This was because fluid was building up in my body. I went to go see a kidney doctor, and he told me I had FSGS. I was 32 when I went into kidney failure. I was living my life. Then I had to go on diAysis. It was a big change and a shock. Your life just starts to revolve around always being in the hospital and around very old fragile people that are about to die. When your on dialysis, there are so many complications. Complications that can kill you. Dialysis is not a natural thing to do to your body, so many complications arise such as infections.

Are you Korean?
If you could go back ten years, what would you have done differently in your life to lesson the chance of getting to this stage?
What happens if you don't find a donor?

Yes I am Korean. I was diagnosed with FSGS at the age of 23. I asked my kidney dr how I got this disease FSGS. I had always been healthy before that point. I ate healthy, played alot of sports, and worked out regularly, so I couldn't understand how I got this disease. My dr told me my fsgs was ideopathic. Meaning there was no known cause for me getting it. He just told me some people are unlucky and they get it. Alonzo mourning the nba basketball player also was diagnosed with fsgs. He has gotten a kidney transplant already. Most people with fsgs will end up on dialysis in 6-8 yrs. There wasn't much I could have done, unless I got a kidney transplant to avoid being on dialysis. If I don't find a donor, I will be on dialysis indefinitely, until I die. Half of all people on dialysis die before they reach 5 yrs on dialysis from various complications.

Does being Korean make it harder for you to find a donor? I know Black patients have a harder time finding a donor than White patients; what's it like for Asian patients?

I'm not really sure, i know my blood type is somewhat more rare then some more common blood types. Also I think is a general lack of kidney donors in the Asian community for some reason.

Do you have any advice for current dialysis patients on how to stay positive?

I'll be honest, it's very hard to stay positive in such a negative situation when your on dialysis. I've been on dialysis for almost 5 yrs and I can honestly say they have been the worst years of my life. When your healthy you totally take your health for granted, but when you lose your health and wellness, you totally miss the feeling of being healthy. I try to stay positive by exercising, going on walks in the park, eating and hanging out with friends, and being proactive in my search for a donor. Alot of times I felt very hopeless. I thought that no one cared. But there are people out there that do care. You just need to find them, or let them find you. You have to fight. If you don't, dialysis will just suck you in like quicksand.

I appreciate the response. My grandmother started dialysis about 3 years ago, and ever since then she's been extremely depressed. She's been having trouble walking, and my grandfather even purchased a small puppy as a futile attempt to cheer up. I wish you the best man, you don't deserve it, you're a nice guy. I hope you get a kidney, best of luck to you!

Thanks, dialysis is very hard on the body, both mentally and physically, it's hard on me and I'm only 36. I can only imagine how hard it would be on me for the older patients in their 60s or 70s. Maybe you can consider home hemo for your grandma, other people tell me it makes them feel a whole lot better because more dialysis cleans them out better.

We had discussed it, but if we actually decided to do that, she would never leave the house. Whats bad is that the Dialysis Center is not run well and nobody there gets treated right, so it just adds more stress on the entire family.

I would change dialysis clinics if you think your dialysis clinic is not run properly. I would change. It's not worth staying at a bad one. They could literally kill you with their negligence.

Next nearest one to her is 40 something miles away, but she's had health problems for years. She's been out of work because of various illnesses/diseases for 25 years, and she's proof that despite her negative attitude, it's possible to still live a normal life.

I know firsthand how when one family member is sick. It effects the whole family. I know when I've been sick, how worried and sad my mom would get. I felt so guilty and sad for putting my mom through all this. That's what hurt me the most. Watching my mom worry about me put alot of stress on me. It is really true, when one member of your family gets sick, the whole family suffers.

Current hemo patient here. Also looking for transplant. Sadly my wife won't let either of my daughters be tested. Oh well. Currently doing home hemo 5 times a week/3 hours a day. I'm sorry you feel so bad. I generally don't. I'm active (ride 20-30 miles a day, work in the yard,etc) don't work because of the time involved. My wife teaches so we have only a few hours a day to do treatment. I still pee (quite a lot sometimes) so there's that. It's a joy. Seriously. Have you thought about the home treatment? I remember being in the center for treatment 3 days a week/4 hours a time. I did feel like shit afterwards. But with home, I'm done, need to sit for 5-10 minutes and I'm good to go. Best of luck to you. Best of luck to us both.

I might try home hemo, still thinkin about it, depends how much longer ill be on dialysis

Why did you and your doctor choose to put you on 3x/week dialysis instead of continuous? How has your experience changed over the four years, in terms of "get used to", medical changes/advances, declination of your kidneys?

Most people on dialysis are going 3 times a week. I don't know of anyone that does continuous dialysis. Some people on home dialysis do it 6 times a week. I don't think I've ever really gotten used to dialysis. I basically have an understanding more so. I have to go to dialysis or I die. It's pretty black and white. Not too many medical changes or advances in dialysis since I started. My health and energy have declined as they years have gone by. The longer your on dialysis, the sicker you get. Dialysis only does 10 percent of the job your kidneys do. Alot of people think that if your on dialysis, the dialysis machine is a replacement for your kidneys. That isn't really true. If anything the dialysis machine is more like life support, it is only doing 10 percent of the job. Imagine driving your car with only 10 percent engine power. That is what it is like living on dialysis. Your only living 10 percent of a healthy life. That's why so many people die while on dialysis.

How much of a normal life would return to you if you recieved a kidney? Pee again?

Yes I would be able to pee again, also It would five me alot more energy, it would basically save my lif

How are you today?

Hanging in there

Why don't more people donate? Is it much harder to live with one kidney, or are people just unaware of the process?

Most people don't donate cuz a lack of awareness and education on the process of live and deceased donor donation. Also, i think alot of people are just too wrapped up or busy with their own lives. Also fear does play a big part.

I'm dead from my nipples down. I can't shit by myself. I can't masturbate. I'm trapped in a bed most days, unable to leave, even to go to the fridge for a drink or snack.

As a quadriplegic trying to live life to the fullest, you sound like a whiny "poor me" little bitch. I would jump for joy if my only disability was 12 hours out of my week.

You could be living in a slum in haiti bathing in and eating human waste.

You've got it good man, and you're too far down in your self pity hole to see it. Man up and live. -A 34 year old quadriplegic

This is not a competition.

Not at all. I just felt that OP had such a negative defeated attitude that maybe having a quadriplegic call him a bitch might make him take solace in what he does have. I would seriously be so happy if I could just stand in a shower and feel "whole body clean". OP doesn't have it so bad, he just has it different than others.

Life on dialysis in 'Murica is a hell of a lot better than normal living in North Korea, or Haiti, or how about being child slave labor making iDevices.

My whole point is that it could be lots lots worse, and everybody should look at the good, instead of focusing on the negative.

I agree without your last sentence. I also can understand how it can be mildly infuriating when you see people around you who have things they don't appreciate to the fullest or you might think they take for granted.

However...

1. Humans are creatures of habit. It takes a lot of reflection to appreciate the little things we take for granted everyday (e.g. eating, showering, etc.). I agree it would be ideal if everyone could find bliss in all those moments. Happiness would so much easier. But this is not human nature, at least not for most people. It's not a bad thing, just how it is.
2. Suffering is real and relative to the individual. Just because a person is satisfied with a certain context or ability, doesn't mean everyone reacts the same way. You have to realize that it is possible for rich people to be depressed and for poor children in Africa to be happy. Even if a person had more luck than you had, that doesn't mean their suffering is not as real as yours. Be glad that you are strong instead of blaming others for whatever emotions they are going through.

Good points.

Everyone's life is different. I have no idea what you have gone through and you have no idea what I have gone through. i don't judge others, unless I've walked in their shoes also

What are you going to do now? :/

I am searching for a kidney donor. In the meantime, I go to dialysis MWF, 4 hrs at a time. Hoping for a donor to come forward.

How does it feel in dialysis.

It's very hard to describe the whole experience of dialysis to a healthy person. Only people on dialysis knows what it feels like and what people on dialysis go through. Basically, after the dialysis session is over, I feel very tired and worn out. Being on the machine isn't painful but it is uncomfortable to sit there for 4 hrs. You feel like your chained to the machine cuz you can't move. So I guess psychologically it is painful in that sense.

I've been looking at an altruistic kidney donation. I don't need 2, and there are people out there that need one. If you are able to get to the UK and I am a match you could have mine!

I do have a question though, what did you think as your problems were discovered? (I would have been terrified) and how frequently do you get people offering to be a donor?

Unfortunately, I need to get transplanted in California. My insurance only covers here, not the UK. Thanks for your offer though. When I found out I had fsgs, I was shocked, almost numb really. People don't offer a kidney very often, and when they do, most of the offers are not serious.

I know that the CKD lifestyle is a rough one - do you take any nutritional supplements? How do you balance your diet given the restrictions inherent with your condition?

I have a dietician that sees me every month at my dialysis clinic. I am supposed to follow a renal diet. I'm not allowed to eat alot of foods.

Thanks for doing the AMA! I don't have any questions, just wanted to good luck through all of this! Fellow dialysis patient's stories always hit home.

My mother lost 50% of both kidneys at age 16 and has been through everything 3 times. Finally looking to get on the list for her 4th transplant soon. I am going to donate to her if I can, if not we are going the kidney swap route. It's a lengthy process and I wish you all the best!

Thanks, good luck

Do I have to be out in CA to donate/get tested. I'm on the east coast right now.

No, you can still get tested. My blood type is B+ I would need a B or O blood type donor. You can call my transplant coordinator at uci medical center in orange, ca at 1-714-456-8441 for a transplant evaluation form if you are interested in getting tested for me, or if you have any questions regarding living donation. Thank you for your interest, I am very grateful.

Not sure if mentioned, why not travel to another country and find another donor there?

I've heard of people traveling to India/china and getting excellent care along with a new kidney/whatever needed.

My insurance won't cover it out of country

How do I check to see if i'm compatible, I have two kidneys. supposed I could share. seriously

My blood type is B+ I would need a B or O blood type donor. You can call my transplant coordinator at uci medical center in orange, ca at 1-714-456-8441 for a transplant evaluation form if you are interested in getting tested for me, or if you have any questions regarding living donation. Thank you for your interest, I am very grateful.

What was your diet before your kidneys took a sh*t?

My diet was a normal diet of a college student. My diet did not effect my kidney failure. If that was the case, millions more would have gone into kidney failure by now if you look at the American diet.

Type one diabetes or some other cause of kidney failure?

No diabetes

What common foods can you or can't eat?

I have to avoid salty foods, fast foods, junk food

How do you honestly feel on dialysis?

Would you give any advice on how to keep your kidneys healthy?

I feel trapped on dialysis

From which company are the products you are using? What are the differences between Baxter, FMC and the likes? Can you choose yourself or does it depend on the contracts the center might have?

I go to Davita dialysis. I've used Baxter and fresenius before. I can't choose, my center chooses.

http://www.livingkidneydonorsearch.com/our-stories2/john-kim/

This is one of my kidney pages, it tells all about the process of living donation, and pretty much answers any questions you all may have.

Have you looked into a kidney donor (daisy) chain? http://www.nytimes.com/2012/02/19/health/lives-forever-linked-through-kidney-transplant-chain-124.html?pagewanted=all&_r=0

Yes if I find a donor that agrees to doing paired donation

Isn't kidney trade legal in Iran? You could travel and get a transplant there.

Honestly I would be scared to go to Iran.

Do you support stem cell grown organs or harvesting cloned humans organs? Did your views change after going on dialysis?

Yes, I would support anything that would help people get off dialysis. Alot of people don't really understand what dialysis is like. I don't really blame them, before I went on dialysis, I had no idea what it was gonna be like either. Basically being on dialysis, is like being sent to prison, for a crime you didn't commit. Your basically chained to a dialysis machine and to a life of being hospitalized constantly and always being sick. I would be open to any new advance that would help dialysis patients.

if you have 30 grand to give me you can buy mine

I would pay 30k to get my life back. To get my health back. Being a healthy is priceless to me.