I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kevno on February 06, 2006, 03:59:25 PM
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How long have you been on the list waiting for a kidney. :)
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Have been on dialysis nearly three years. Told here in Oz the waiting list is about 4 years. My sister got one in about 18 months though. All depends on the match. Liz
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I've been trying to get on since July 2005. Pretty soon I'll have to start over. I think I'm getting close though. I mailed in the "poop" samples today. Bet ya'll wanted to know that!!! ;D ;D
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ZERO
I have been on 12+ years straight. I choose not to have a transplant.
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I wish there was an option in this poll for Not On Any List or Never On A List. There is no such thing as a list in the country where I am.
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There was another thread with a poll asking this same question here:
http://ihatedialysis.com/forum/index.php?topic=181.0
:) No problem though I just pointed it out so you can see those replies too.
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Tell you the truth I just put the poll to see what resonce I would get. The answers are what I thought they would be. I am supposed to be on a list? But I have been on the list for over 18 years now. Only ever been called once in 1991. I was told I was going to have the transplant at 4pm. Had pre-med had drips up. ready. Then at 4.05pm One of the nurses came to talk to me. She said they had found something wrong with the kidney. So I was just sent home. So a life changing moment gone. I was then told I was going to be put on the priority list. If there is such a list, it can not be a good list, I have supposed to have been on it for 14 years now. (NO CALLS). >:(
I was in the waiting room, some of the patients where talking how long they had been "On the list", it was interesting to listen to them. They believe to get on the list will change everthing. :-\
Kevno
(on the "LIST", you have to be a patient patient!)
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In 1998 I was told about my kidney failure and put on PD dialysis and signed up for "the list". I only waited 3 months for a kidney once I got on the list. I had the kidney for three years and it rejected... because of a dispute between my nephrologist and transplant center. I was on an experimental immuno and my neeph. was mad because he was not getting me back as a patient so he wrote a letter to my transplant center saying they were "stealing" his patient. Long and short of it I ended back with my neph. and he could not even check my drug levels because they were new drugs. I got sick and he threw excuses at me and I ended up in the hospital with the kidney rejecting and he promptly shipped my right to the transplant centers hospital. It was too late the kidney was shot!! I did not have the knowledge then I do now so I did not know how to "save" that kidney. As to the question I am really sick of dialysis after almost three years back on so I have just started the application process to get back on the list. I live in Fl and this state has the least amount of wait time I am told. I know you can register at multiple centers and states if you have the means to stay for the couple of maonths after to me monitored. There was a man from New Jersey who got the sister kidney to mine and said he registered in Florida because of the short wait time.
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In England there is one main transplant list, then the priority List? I have seen my name on the so called list but :-\.
I know transplants are taking place at Manchester, But I still wait to get called. Maybe one day. :-\
Kevno
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I've had 5 surgeries in less than 9 months and I'm exhausted. This Lady wants to donate a kidney to me and I got a call yesterday that they are going to run the match tests. :-X
I am not ready for another Transplant. :'(
If they would have given me one before my other one failed, that would have been GREAT! WHY wouldn't they do that? The lady was willing then too!
I'll tell you WHY.......$$$$$$ My insurance has probably dropped $130K here in 9 months. And all my tests were fine.
Now, I'm depleted and exhausted and completely in the basement emotionally and physically and NOW they want to give me a transplant!??
I'm probably worrying for nothing because maybe we won't even match.
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Rerun,
I know it is a very hard to decide which way to choose. But at the end of the day it is all up to you. Plus which ever way you choose I sure everbody will be on your side 100%.
Sorry I can not be more helpful, It alway comes down to YOU. What YOU want to do. What YOU feel is the best for YOU. I'm sure you will decide the right way for YOU. Plus if the kidney is not a Match then like you said, you may be worrying for nothing, if the kidney is not a match.
Yours always
Kevno
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Best of luck Rerun, for whatever you decide. Just out of curiosity, how do you know this person?
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Thanks Kev :)
Sara, I work with her. She is in another part of the state, but we know each other from work. Her husband had ESRD and she tried to match him and didn't. His brother gave him one finally. Then she came to me because she knew I was losing my transplant. I told her I didn't want a "living donor." Too much guilt if something happened. So, she went on to match this other young man and they didn't match either.
So, she came back to me and said "I'm going to give away one of my kidneys. Either to you or a stranger." So, now we are going to try and match.
BUT I'M NOT READY!!! :o
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Rerun
Don't rush to a decision. Have all the test done that will take a few weeks. Tell this woman how you feel, that you are not ready just now. You do not have to say yes straight away, even after the tests. If you do match, will she not wait for when you are ready. She seem a very generous person, I sure she would not mind waiting till you are feeling strong enough for the transplant.
Keep :) :)
Kevno
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My tale of woe: I was totally worked up through Kaiser and sent to Loma Linda so they completely worked me up about five years ago and then rejected putting me on the list because they wanted me to lose 20 pounds. Would not even LIST me without the weight drop. Other people I have seen get transplanted weighed the same as me. What in the hell?
I have dropped the twenty pounds now and am back soing all the Kaiser work up again so they can run be back by Loma LInda. If this one does not get me listed then to hell with them! I give up. Why put myself through hell and back wondering about it, when I can do this stuff three days a week and live in peace.
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Came home last night, and my "kidney pager" was beeping...so I checked it and sure enough theres a new (very first) call. So i call the number (i'm extremely excited at this point) and i get an automated answering machine that says "thank you for calling the [whatever it was] veterinary clinic". i was pretty sure they werent giving me a dog or a cat's kidney, so i checked to make sure i had dialed the right number. I had. Must have been them phoning the wrong number. extremely annoying...
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Came home last night, and my "kidney pager" was beeping...so I checked it and sure enough theres a new (very first) call. So i call the number (I'm extremely excited at this point) and i get an automated answering machine that says "thank you for calling the [whatever it was] veterinary clinic". i was pretty sure they weren't giving me a dog or a cat's kidney, so i checked to make sure i had dialed the right number. I had. Must have been them phoning the wrong number. extremely annoying...
Dang! What a disappointment. :( >:(
Are you going to call the vet clinic and tell them they called the wrong number? Maybe you should. They may have a client number wrong on their account, and may be calling your every time they want to call that client!
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I've had 5 surgeries in less than 9 months and I'm exhausted. This Lady wants to donate a kidney to me and I got a call yesterday that they are going to run the match tests. :-X
I am not ready for another Transplant. :'(
If they would have given me one before my other one failed, that would have been GREAT! WHY wouldn't they do that? The lady was willing then too!
I'll tell you WHY.......$$$$$$ My insurance has probably dropped $130K here in 9 months. And all my tests were fine.
Now, I'm depleted and exhausted and completely in the basement emotionally and physically and NOW they want to give me a transplant!??
I'm probably worrying for nothing because maybe we won't even match.
Got word today that we were not compatale. My PRA (Panel Reaction Antigens) is 93. Zero is the best. I'm not too disappointed because I feel that I've had my transplant. It lasted 17 years. Why should I get a second one before everyone has a chance to get their first?
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Been on the transplant list for a little over three years. My sister in law has offered me one and will be tested but I'm not sure if I am ready. So many things could go wrong and to tell the truth , a little afraid of anti rejection drugs. May be not be desperate enough, because dialysis is working well for me. Have not had good function since 5 years old , so I feel better now than I have in years. learned to live with only partial kidney function for over 40 years before dialysis.
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I am not on the list right now but I was on the list for just about 5 years when I finally got the call. I was so excited I could hardly talk. It was 7: AM when I got the call I thought it was my husband calling to make sure I was up for work. I almost didn't know what to do first, then I called my husband in work and told him to come home to take me to the hospital. Then I called my sister to tell her, she said when she saw my number on the caller ID she thought I was calling to see if she was up for work yet as we drive in together in the mornings.
I think back to that day and how excited I was and the woman in the bed next to me when I came back to my room after the transplant was complaining about how they didn't even give her any notice when they had a kidney for her. She actually asked the dr. if she could think about it for a while and call him back. The dr. was mad and told her she could call him back but she only had 10 minutes then the kidney would go to the next person on the list.
She said to my sister I don't see what the big deal is I was only waiting a few months when they called me. My sister told her it was a big deal that I had been waiting for 5 years before I got the call. I don't know if she ever figured out how lucky she was to get that call in such a short time.
I live in Boston, MA and the average wait time on the list is 5 years.
I have know some fellow dialysis patients that have moved to fl. because the wait time is supposed to be so short down there.
Hopefully the next time I will get a live donor as that is the best chance for success.
There is a swap program that matches people looking. My daughter is an A and I am a B, so what they would do is find some one that is an A that has a B donor and we would swap. Well as long as we matched any way.
I don't see this happening right away but down the line some time.
I don't mind getting a live donor, statistically there is less kidney problems among kidney donors because they have to be 100% health to begin with.
My first transplant came from my sister I should say from one of my sisters I have three sisters. Any way the one that gave me the kidney had a baby 11 months later to the day.
I tell you this so you would see how well people can still be after donation. :)
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I just got the letter today that I am UNOS listed. It also says the wait can be many years and I have to update all my physical exams each year. Geez I just got done and have to start again in May with the mammogram. I know my chances are like me winning the lotto, but I like being able to say "yes" I'm on the waiting list. Actually, if one more person would have said "aren't you on the waiting list yet" I would have slapped them! :-\
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aside from being on a local or regional list every on that gets listed also is place on a national list. It's called the one in a million chance or some thing like that or so I've been told. What happens is if a kidney becomes available no matter where it is if you happen to be a so called perfect match (well a perfect a match as you can be any way) you get the call not matter where you are on the list, even if you just got on and you are on the bottom. But like the name of it suggests it's like one in a million.
A nurse at my unit says since they started that our unit has had three of those matches, so you never know. :D
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I would not mind a one in a million chance for another Transplant. Been on the so called list for 17 years May this year 18years.Now I will have to come off the list again, try to get back on it again in a few months.
Know how you feel Rerun about being able to say "yes". My answer for know will be "no" Just for now.
I have already been taken off the list again. So that chance in a million, or to win the lotto looks very good to me, just now. ;D
I have seen a lot of patient get transplants, so I thought I was not on the list. I got shown the list to prove that I was on it. That was nearly five years ago now. I'm almost sure they just put my name there for a day :-\
Kevno
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Waiting for a call from the transplant surgeon. A little scared. Any questions I should be asking???? Due to the fact I have an ostomy, since I was 5 years old, greater chance of infections. They are still debating wether they want to remove my present kidneys. Still producing a lot of urine, despite 3 years on dialysis. Would feel bad if sister in law goes through with giving me a kidney and I loose it from an infection. But I'm tired of doing the dialysis thing. I know I have to do it to stay alive, still , starting to get it's starting to get old real fast.
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Wow that's a long time on the list :'( I feel so bad for you.
I can't imagine waiting that long on there? Do you have a rare blood type?
I'm not currently on the list but they did say they would put me back on in the future.
I'm not on right now because my dr. would like to wait and see if they come up with any new meds or some kind of treatment for what I have (fsgs) first.
I went through a very bad time after my last transplant. I'm glad they didn't just say it's out of the question. ;D
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Only been on dialysis past three years, made do with apox 25-30% function of kidneys from 5 years old to 44 years old. Doctors have been talking transplant since early teens but were leary because of ostomy
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One strategy to get that kidney sooner is to list in multiple places. I live near Los Angeles and the wait at UCLA where I was originally listed is longer than in smaller communities. When I asked my HMO about the possibility of doing this the answer was that it was possible at other transplant centers where they had contracts. I immediately got listed at UCSD in San Diego which is where the transplant ultimately occured. I went through the entire workup at UCLA and those results were accepted by UCSD. My dialysis unit submitted monthly blood samples to both centers for tissue typing etc. I never met any of the medical staff in San Diego before the big day came along. If you do list at a distant center be prepared to get there and to be available for followup visits for a period of time after the transplant. In my case the drive to San Diego is about 150 miles each way. I got pretty good at leaving here around 5AM, being at the hospital for 8AM labs and Dr. visits and would be back home by about 1PM. Followup following the 3 month period after transplant has been handled locally here.
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:bump;
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List? What list? You mean there is a list? :sarcasm;
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In all countries of the world the waiting time for a transplant is rising as the number of new dialysis patients increases while the number of donor kidneys remains stable. This is why many transplant programs use highly arbitrary, medically unjustifed criteria to exclude people from the list, just to keep the numbers down. People with excess weight, excess age but good non-renal health, and 'compliance problems' because they cannot control their fluid intake should really be accepted for dialysis. It is particularly silly to imagine that because someone cannot torture themselves to drink about 1/4 of the normal fluid consumption per day while on dialysis that means that they cannot discipline themselves to take some pills twice a day with a transplant!
In Canada the waiting period for a kidney is absurdly long at 8 years. In the U.S., some areas are much quicker than others, and I have heard that in New Jersey the list is shortest. I had the option of enduring a longer wait for a new kidney in Canada or having a much shorter wait (about half as long) in the U.S., but I opted for Canada, since the death rate among dialysis patients in the U.S. is double what it is in Canada. It is an interesting dilemma for gamblers: run a higher risk dying while on dialysis to get out of it quicker, or run a lower risk of dying on dialysis but have to endure it longer.
I found my kidney transplant to be not at all stressful, and after three days in bed I was able to get up, fly back home, and start work two weeks later. The stress of surgery should not deter anyone from getting a kidney transplant, especially since the death risk in the operation is so small -- only one in 3000.
For those with the courage and the money, you can always get a transplant in two or three weeks if you are willing to buy one in China, Pakistan, or the Philippines. If you happen to be an Iranian citizen, you can buy one from someone without even leaving home.
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the death rate among dialysis patients in the U.S. is double what it is in Canada.
My husband was reading an article several months ago about the death rate of US dialysis patients vs. other places (especially Europe). There are many reasons for the higher death rate here: 1)we put older, sicker people on dialysis, including HIV positive patients, which other countries don't do; 2)we run shorter treatments. It's an agreed upon opinion that we Americans are impatient. Our dialysis treatments (in-center) tend to run 3-5 hours, 3x week, whereas other countries use 6-8 hour runs more frequently (4 or 5 times a week, can't remember for sure).
So yes, we probably do have a higher death rate in the US, but always ask what ISN"T being reported with the numbers?
Just my :twocents;
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In the countries where I am familiar with dialysis -- England, Germany, and Canada -- all of which have socialized medicine, everyone who wants to go on dialysis is put on dialysis, whether they have HIV or other severe co-morbidities, and yet their yearly death rates are in the 10-13% range, about half the rates in the U.S. I could not detect any age difference between the patients in American clinics and in clinics elsewhere. Also, the shorter treatment times in the U.S. are so that the for-profit treatment centers can make a bigger profit by treating more patients in less time, not because of the greater impatience of Americans! People are people all around the world, and the patients I have seen at dialysis are just as eager to get to the end of their treatment sessions regardless of the color of their passports.
Keep in mind that there is a huge amount of politics surrounding dialysis and the for-profit healthcare system, so the capitalists making money off of patients' misery by delivering minimal dialysis treatment in the U.S. try to camoflage what they are doing but pouring out as many specious and misleading arguments as they can dream up.
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:bump;
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Otto's been on the list since March 2007. We found out yesterday that because of his PRA he needs a perfect match, so he'd be bumped to #1 if one becomes available
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My husband was first listed in February of 2005, but I don't think his function was low enough at that point to have priority. He went inactive about 6 mo. later. He ultimately changed transplant centers and had to begin the process over again. The new center wouldn't put him on "active" until he had his PKD diseased kidneys removed. The doc felt the nephrectomies were necessary for a good outcome with the transplant because the diseased kidneys were so large. They were increasingly crowding out everything else, such as his lungs.
The need for nephrectomies as a step to get listed introduced an new issue. My husband still had remnant kidney function. I know many out there understand the value (physically and psychologically) of being able to produce some urine, no matter how small. Giving that up voluntarily was a very difficult thing to do. So he was inactive until March 2008 when he had his nephrectomies. He moved ahead after he learned that my brother-in-law was willing to donate.
So, not sure how to answer the survey. Any suggestions?
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Never saw this one.
My first attempt to be on the kidney list was from a hospital that was reccomended in August of 99 and listed by October. As I was asking more questions, I found out that there was a pancreas transplant also, but the hospital did not do one yet and the coordinator asked if that I found any information that was good, to bring it in. When she said that, I decide to look for another transplant center, I later found out that she was fired. So in Feb of 2000 I was listed for a k/p tx at my current center. Found out I was taken off the list by mistake because UNOS had me listed as getting a transplant, when my transplant center calling me to ask if I had a transplant. Apparently they were not getting blood samples ether that I was not aware of (I never looked when they took blood when I was on dialysis). Within a couple weeks I got my transplant. When they called, the first question I had was "Do you have the right person?" and the center asked "Do you want a transplant, then get down here" So my time on the list exactly is unknown due to the snafu, but definitely less than a year and a half.
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I was on for 11 months. From mid-February 2007 until January 9, 2008.