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Old 01-08-2015, 06:29 PM   #1
Amoeba
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Ask a guy with kidney failure anything

We all feel like we're young and invincible. I'm a bit older at 39 compared to you guys but I'm in great physical shape with no illness. Except I have a ticking timebomb in my body that's slowly destroying my kidneys. The condition is called IGA nephropathy, where your body mistakens the kidneys as foreign and attacks it. It's more common in young Asian male, cause unknown. Basically your body overproduces immune cells after an infection and eats away at the kidneys until they finally lose all function. That's where I am, and I probably only have 15 years left to live without a transplant.

I was first diagnosed at age 32 when they noticed traces of blood in the urine. Normally kidney cleans the blood then returns it to the blood stream but when damaged some of the red blood cells leak through. By that time the kidneys already had extensive chronic damage, and about 60% function remained. Over the next few years it progressively got worse, dropping to 30% 4 years later. Eventually the kidneys dropped to 7% function, and I was hospitalized a week due to acute kidney failure last October at age 39.

Options are limited for patients who have kidney failures. It's either get a transplant or go on dialysis. Dialysis is not the miracle cure people think it is. Your life span is cut short while on dialysis due to the toxins that build up between treatment. Most likely it'll be 15 years before the side effects will eventually kill the patient (heart/lung failure). Life on dialysis is no cake either, as you're completely wiped out after a treatment and can't really work. It's keeping you alive, but just barely.

A kidney transplant is the best route for kidney failure patients but there is a long waiting list. It has the best life expectancy prognosis and lifestyle freedom. However there are 100k+ people waiting for a transplant and only 9k people get a transplant every year. The waitlist for my blood type (O) is 8+ years at the local renowned UCSF. The longer I wait for a transplant on dialysis, the sooner I'm expected to die.

A kidney donation from a dead person typically lasts 8 years, while a kidney from a live person lasts double of that. In my situation, I would benefit the most from a live donation since I have more years to live. However my parents have been ruled out because they're too old (over 65), and my wife is not blood type compatible with me (She's AB). My wife would donate to me in an instant, since people can live on 1 kidney perfectly fine (The remaining kidney grows larger to compensate). The only way to find live organ donors then is to get the word out and look for generous donors. Like bone marrow, if any one or friends is willing to help and get tested, you could potentially save somebody's life.

It's been hard for us as it's a shock to find this while we're so young. My wife and I have an 8 year old daughter and it pains me to think I can't live long enough to see her get married, much less have grandchildren. It also saddens me that I may not make it to retirement, and my wife may have to make the journey from 60+ years old alone. We've come to terms with it somewhat, but I'm determined to fight for the best chances I can get to extend my life expectancy.

I don't post as much, but I've been on this board lurking in OT for 12+ years. Initially it was my zhp and now with a F30, you guys have always felt like an extended family that I visit everyday. If you guys have any advice or know of someone who's willing to consider a life saving kidney donation, I would really appreciate the thoughts! I'm also happy to answer any questions you may have, as I've become very studied in this area .
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Old 01-08-2015, 06:32 PM   #2
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Holy sh!t man, I can't offer anything other than sympathy and condolences, both of which are meaningless. Yet you have both.
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Old 01-08-2015, 06:33 PM   #3
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Old 01-08-2015, 06:34 PM   #4
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much love Amoeba. I hope you find a doner soon.
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Old 01-08-2015, 06:44 PM   #5
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I sympathize and empathize with you OP, which is why I supported the creation of this thread in the first place. I truly hope that you are blessed with a donor at some point to extend your years. I have a close friend whose kidneys failed him in his late teens due to drug use; he is now in his early twenties. He is currently on dialysis, and like you stated in your post it is extremely draining. He still tries to train Capoeira when his body allows, but he is not able to move as well as he used to and his body tires very quickly. With the onset of his condition, he has responded negatively in some ways (..from a psychological standpoint), so I applaud you for keeping a cool head.

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Old 01-08-2015, 06:46 PM   #6
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Sorry to know about your condition. Keep the faith, medicine will advance quite a bit in 15-20 years, despite Obamacare. If they can make an artificial heart, they can probably come up with an artificial kidney. You'll probably find a donor before then. Your blood type is pretty common. (I'm B+)

I do have a couple of questions though:
  1. Does the donor have to have the same blood type?
  2. Does the RH have to match?
  3. Anything else beside blood type have to match?
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Old 01-08-2015, 06:53 PM   #7
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I'm sorry to hear this man. That's definitely a tough position to be in. I'm willing to bet you fully support the growing of vital organs in a lab from stem cells or donor cells. Have you thoroughly investigated this possibility in another country? In countries such as Sweden or Switzerland (can't remember) they are actively doing medical procedures that's aren't allowed here in the US. My cousin was paralyzed in an accident last year, and was trying to apply for an experimental procedure in Europe that is showing excellent results using stem cells. It might still be a possibility for him this year.

Is this a genetic thing? When you said there were trace amounts of blood in your urine, did you find this out from a blood test or was it visible? How does it affect your daily life?

I guess all you can do is be grateful that you live in a country and a time with the means to treat the illness, and give you time to plan the best things for your wife and daughter. You can still have many good times in 15 years, and medical advancements will undoubtedly improve treatment in that time.
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Old 01-08-2015, 06:54 PM   #8
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My wife would donate to me in an instant, since people can live on 1 kidney perfectly fine (The remaining kidney grows larger to compensate).
My neighbor and good friend was in the same situation about 5 years ago. Had kidney failure and received a donation from his wife. I really hope you find someone.

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medical advancements will undoubtedly improve treatment in that time.
Also, this entirely.
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Old 01-08-2015, 06:57 PM   #9
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If your wife would truely donate a kidney to you in a heartbeat, have you considered joining a transplant chain?
http://transplants.ucla.edu/site.cfm?id=205
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Old 01-08-2015, 07:03 PM   #10
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If I wasn't fairly likely to encounter kidney failure in the future (insulin dependent diabetics account for almost 1/2 of all kidney failure cases from my reading) I'd be happy to see if I could help. I sincerely hope that you find a donor that can help or that science finds a better treatment/solution for you...
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Old 01-08-2015, 07:09 PM   #11
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did you come up with username b4 or after condition?
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Old 01-08-2015, 07:14 PM   #12
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Ask your doctor about Remicade. It gives your body something to fight so it doesn't fight itself! Not sure if it will help but you can always ask!

O Pos is the best one to have, yes? A longer wait sometimes, but easier to match?

I doubt it will be 8 years... (I hope not at least) I had a neighbor with liver issues and they told him the wait list was long... He was prepared to die waiting. They called him the next month... You never know! Stay focused and keep your head in the game!
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Old 01-08-2015, 07:15 PM   #13
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Quote:
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Your blood type is pretty common. (I'm B+)

I do have a couple of questions though:
  1. Does the donor have to have the same blood type?
  2. Does the RH have to match?
  3. Anything else beside blood type have to match?
My blood type O is common but I can only accept from O. Whereas all other blood types can receive from O. A can get from A/O, B can get from B/O, AB can get from A/B/AB/O. The RH don't have to match.

In addition, the antibodies have to match, but for the most part this can be overcome with pre-treatment. I have very low antibody count for example so it's fairly easy to match.

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Is this a genetic thing? When you said there were trace amounts of blood in your urine, did you find this out from a blood test or was it visible? How does it affect your daily life?
It's not genetic, not related to anything you did either. It just happens to some people. I was doing a urine test for life insurance application when I found out. This IGA progresses very slowly, there are no symptoms before total failure. Just shows up on tests.

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If your wife would truely donate a kidney to you in a heartbeat, have you considered joining a transplant chain?
http://transplants.ucla.edu/site.cfm?id=205
Yeah she's thinking about the donor exchange. She really prefers to donate directly to me though. It's a much more intimate bond to think that her organ is in my body helping me. It's a personal thing and everybody feels different.
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Old 01-08-2015, 07:20 PM   #14
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fawk, I thought I was in bad shape, sorry to hear this Amoeba....I had a kidney stone last year and it was the most painful thing in the whole world. I've broke many bones in my body as a kid while skateboarding and snowboarding, but let me tell you. The kidney stone is no joke, but I really sympathize for you and I wish you the best of everything and stay healthy as long as you can, hopefully you find a match donor and see how far life takes you.

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Old 01-08-2015, 07:25 PM   #15
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Quote:
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If I wasn't fairly likely to encounter kidney failure in the future (insulin dependent diabetics account for almost 1/2 of all kidney failure cases from my reading) I'd be happy to see if I could help. I sincerely hope that you find a donor that can help or that science finds a better treatment/solution for you...
Thanks Wraisil, I really appreciate it. Yes 90% of the people on the transplant list are due to diabetes, most of them eating themselves into that condition. Americans are not taking good care of their bodies and balloons the wait list for the rest of us.

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did you come up with username b4 or after condition?
Before. Had it since high school.

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O Pos is the best one to have, yes? A longer wait sometimes, but easier to match?
No, O is probably one of the worst. It has the longest wait time (because it can only receive from O, but other blood types can take an O kidney if needed). There's are also a lot of type-O patients ahead of you in the waiting list, so those people go first.
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Old 01-08-2015, 07:28 PM   #16
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Yeah she's thinking about the donor exchange. She really prefers to donate directly to me though. It's a much more intimate bond to think that her organ is in my body helping me. It's a personal thing and everybody feels different.
Aw, man....I was looking forward to pics of the wife with your organ inside her....
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Old 01-08-2015, 07:33 PM   #17
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Damn. It's things like this that can put personal "problems" in perspective.

Props to you for being strong about it and level headed. Actually having a guesstimate on when things may come to an end, and how, would be a heavy load to carry -- especially given family and all.

Really makes you appreciate the days you have and the time you get to spend with those who matter the most.
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Old 01-08-2015, 07:40 PM   #18
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fawk, I thought I was in bad shape, sorry to hear this Amoeba....I had a kidney stone last year and it was the most painful thing in the whole world. I've broke many bones in my body as a kid while skateboarding and snowboarding, but let me tell you. The kidney stone is no joke, but I really sympathize for you and I wish you the best of everything and stay healthy as long as you can, hopefully you find a match donor and see how far life takes you.
I had a stone too 3 years ago and it was the worst pain in my life. Fainting and nauseating till the moment it passed, spent 2 nights in the hospital because I was drugged so bad and had no one to drive me home and back, was going through a divorce so it was a pretty stressful and low point in my life.

OP I feel for u buddy. All the best.
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Old 01-08-2015, 07:47 PM   #19
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Have you thought about offering a monetary incentive to someone willing to donate? Not trying to sound insensitive but I know the organ trade is booming over seas, have you considered that ?
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Old 01-08-2015, 07:53 PM   #20
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Are you allowed to join multiple transplant lists? I remember we had a guy coming down who lived on LI to MD for his kidney transplant. His story is that he was in the tax accountant's office getting his taxes done and happened to mention that his kidneys were failing and that he needed a transplant. The tax guy actually was so moved that he got tested, was a match, and they set up the transplant from there. It was a pretty heart-wrenching story.

Really hope you can find a donor. Does the fact that you got it from IgA (and not diabetes or something more self induced) plus the fact that you're a healthy sub-40 year old bump you on the transplant list? Or is it like liver transplants where all that matters is how messed up your body is?

Dialysis is a pain. Are you still able to work?
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