I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Rivy on October 25, 2011, 12:01:09 PM
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Wow! I'm so frustrated the someone on dialysis for 6 months received a kidney. I just can't believe that only being on dialysis for 6 months a patient got a call from our transplant center (Albuquerque) and she was a match for a new kidney. I've been on the list for 2 and a half years and still no call or no call on any status. I'm sort of wondering if it's on favoritism or something else. I thought that you had to be on the kidney list for over 2 years..how is it possible that someone only in for 6 months getting that call? Something must be :rant;going on..I asked and the nurse said that she must have a rare blood type..Really! That's evening hard to believe. I don't see how that is if she is Indian decent..I have to believe she is O blood type ...I talked with her about this and she told me that they didn't want to test her sister that was going to give her a kidney..and all of a sudden she gets that call for a new kidney...I am wondering if it's back ground or something that it's someone in the AKC Albuquerque Kidney Center has something to do with choosing who will get a kidney? I'm just disappointed that I've been waiting this long and someone gets a new kidney before me and doesn't have to wait for the two years for one...Does anyone have any suggestions on how this is possible or what should I do, call to up grade my status? It's just unfair!! :rant; ???
Thanks for listening,
Rivy
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I think sometimes it has to do with finding the very, very best match for the available kidney. I talked to my nepho while I was working on getting dental clearance to be placed on the list. I asked him why I couldn't be placed as 'active' until the dental clearance was done (considering my transplant team advised me that it takes anywhere from 4 to 5 years on the list to get a transplant). He told me about a client who was on the list for WEEKS, not months or years. It may also have something to do with severity of the patient (???). I'm sorry for your frustration. You should definitely talk to your case manager.
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Where did you get the idea that you had to be on the list for 2 years before you could be considered to get a kidney?
It's impossible to know all of the facts behind someone getting a kidney. Maybe she had a rare blood type. Maybe she agreed to have an EC kidney. Maybe she has a lower PRA than you do. Maybe she agreed to a high risk donor kidney. I had been on the list for only a month or so before I got my first call. The donor was living with his HIV+ girlfriend but had been regularly tested. HIV results take about two weeks, and when this donor died, he had been tested but had not received the results yet, so the transplant center could not guarantee that he was HIV negative, hence he was labelled "high risk". With high risk organs, all waiting list rules go out the window.
So, there are more factors than just how long you've been on the list that determine whether or not you get a kidney. I don't know where you got the 2 year thing.
If you have any questions, I'd encourage you to contact your transplant coordinator as I have no idea how these things work in your area. Good luck, and let us know what you find out.
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From what I was told, there are 6 things are checked for a match. Don’t ask me what they are.
If someone has a perfect match, six out of six, that person will get the kidney regardless of time on the list. Finding a perfect match is like winning the lottery. I’m sure someone will correct me if this is incorrect .
Bill
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Bill, that is exactly right! When my husband got on the list we learned that our center transplanted someone who had only been listed for a WEEK!
I call that lucky. :2thumbsup;
Please do not begrudge the recipient of this kidney. When you get YOUR kidney you will know that it is the best one for YOU! They want the kidneys to match as best they can so the likelihood of rejection is as low as possible.
I learned to celebrate EVERY transplant. :clap; :clap; :clap;
It shows that these wonderful procedures DO take place and ARE successful. Your day will come. Keep yourself as healthy as possible in the meantime so your body is ready for that kidney.
:grouphug;
Aleta
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I don't know your blood type but I am Oneg. While we are the universal donors, we are NOT the universal recipients and considered rare blood types. So if this person is type O, I think it is great that they got a kidney so fast! it gives me hope. I just started jumping through the hoops to get on the list myself. The decision was not an easy one for me but thanks to the wonderful people I have met here on IHD. I do understand your anger, it's easy to feel like everyone is against you. I feel like that every time I try to talk to my insurance company! Definitely talk to your coordinator. He/she should be able to put your mind at ease. BTW, I have some relatives in Albuquerque! I love it there!
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I get so happy to here when someone got a transplant I cant even get on it yet until I lose 10 to 15 kilos and it is not easy since I am on PD and the sugar is making me gain weight instead of loosing. So Please dont get frustrated it will come when its your turn and you are a good match. At least you are on the list.
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I was told that the wait time on the list is an average, not a requirement. If a kidney comes up that you are a match for, it doesn't matter if you've been on the list for 10 days or 20 years.
I got my last kidney after being on the list for only a month. In May, I will have been waiting for 8 years for my next kidney. There is no perfect amount of time.
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let`s all pray it`s a new trend.
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Rivy I understand your frustration and annoyance.
However Riki has it pretty right (wow, Rivy & Riki... say those names together real fast a few times...). The list wait time is an average. For every wonderfully lucky person that gets that call at 6 months, there's also someone who's waiting 6 years, or longer.
It *is* all about the HLA matches and as frustrating as it seems you just have to understand that if that person is the best match for the kidney, with the best chance of a long lasting transplant, then they get that call - be it waiting a week, a year or ten years.
I know all of this doesn't help you feel any better or less frustrated. All I can hope is that you remember to be happy that there's one less person on the list and wishing that person all the very best for her transplant''s long life.
I will share with you a small story of my own along these lines:
In October last year, so actually around a year ago, I was sitting in D on a Saturday afternoon. The guy sitting right in front of me GOT THE CALL!! There was much celebration and happiness and everything. Now I didn't know this patient personally - he was a home dialysis patient that was in the unit due to some problem with his machine or something (guess he didn't need to worry about that!!!). Well anyway I made the mistake of asking him what blood group he was. He was A+ and he'd been waiting 3 years. Well I'm A+ and at that point in time I'd been waiting over 4 - nearly 4 and a half. At that time, I remember feeling quite similar to how you're feeling - and at the same time also upset with myself because I was, in a way, upset that this guy got a kidney "ahead" of me. Don't get me wrong - I was totally rapt for him, wished him well as he went off to surgery etc, but there was that little voice inside asking "but where's mine?" Now of course, just because we shared blood groups means really very little. It's all about those matches, and the cross match, and all that stuff. Now as it happened, I got MY call about a month or so later and it was my turn - and so far so good.
Who knows Rivy - you could get the call next week. Maybe not, but maybe so. You just never know. Please try to not think of it as being unfair to you because you've been waiting longer - the "list" is NOT a linear, first come, first served kind of thing - of course the weighting is there for folks who have been waiting a longer time - such that if a kidney equally matches say 2 people, the one waiting the longest will get first shot - but it is not linear in how it works -.. and the "list" will look different for each kidney that comes up, because of the matching and so on so it's an ever shifting pool of possible candidates.. and sort of like the lottery if your magical six numbers come up then whammo - party time.
I do hope yours is sooner rather than later.
In the meantime, try and hang in there and to not begrudge those lucky enough to have gotten that call.
Just my two cents.
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Two things:
Ask what your PRA level is - it represents the percentage of the population that your antibodies would reject. This will tell you if you're waiting longer than the average. It will also tell you if you need to find a center that does desensitization.
O blood type is not rare, it's very common. And it's the largest pool of people waiting for kidney transplants.
O positive is the most common blood type. Not all ethnic groups have the same mix of these blood types. Hispanic people, for example, have a relatively high number of O’s, while Asian people have a relatively high number of B’s. The mix of the different blood types in the U.S. population is:
Caucasians African Hispanic Asian
American
O + 37% 47% 53% 39%
O - 8% 4% 4% 1%
A + 33% 24% 29% 27%
A - 7% 2% 2% 0.5%
B + 9% 18% 9% 25%
B - 2% 1% 1% 0.4%
AB + 3% 4% 2% 7%
AB - 1% 0.3% 0.2% 0.1%
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It's just unfair!! :rant; ???
Gregory commented to me the other day, that when he was on in-centre haemo, when people got their transplants he always got depressed. He hated it. I know you probaby also do the thing to be happy for them and so forth, but with the disappointment, I get where you're coming from.
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In the USA:
As of today there are 96,012 people waiting for a kidney.
34,417 new patients were added to the wait list in 2010.
16,900 people received transplants in 2010: 10,622 from deceased donors and 6,278 from living donors.
The supply of deceased donors will never meet the ever growing need.
Living donors are making a difference. It improves the chances for everyone who does not have a donor when a living donor donates.
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Gregory commented to me the other day, that when he was on in-centre haemo, when people got their transplants he always got depressed. He hated it. I know you probaby also do the thing to be happy for them and so forth, but with the disappointment, I get where you're coming from.
As I posted above with my little story I was down at that time - but I honestly think the other times, and there were only a few mind you, that folks got the call that I knew about I was absolutely stoked for them. Two I remember vividly was one guy who had been on D when I started for a year or so, and his call came after 4 or so years that I was on D - so he was right on the average wait time here. All of us (staff and me) were SO happy because we'd been wondering and waiting. Another one was a guy I met just after new year's about 3 or so years ago. He had gotten the call on New Year's day (I guess we can all imagine the likely source of the organ :( ) and he'd been waiting "only" two years. The thing is he had a young daughter(or maybe it was a son), young wife etc and his whole life ahead of him. I was so happy for him, and we were all very upset when that tx failed. He got another one six or seven months later - and some may think THAT is very unfair - and as far as I know that one is still going - and again we were all very happy for him that that second chance worked - and btw he was/is same blood type as me.....
I tried to look at it in two ways:
1. Someone is getting their life back - HOORAY
2. One less person on the list waiting for an organ - HOORAY
I tried to not view it as a competition or something where somehow that person was better than me because they got the call. The only "better" think about them is that they were the better match for that organ.
I bet someone was upset when I got my call. It's a normal human response. All the same I tried to focus on the posivies of it rather than the negatives as much as I could.
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In the USA:
As of today there are 96,012 people waiting for a kidney.
34,417 new patients were added to the wait list in 2010.
16,900 people received transplants in 2010: 10,622 from deceased donors and 6,278 from living donors.
The supply of deceased donors will never meet the ever growing need.
Living donors are making a difference. It improves the chances for everyone who does not have a donor when a living donor donates.
Thank you for these stats, okarol. I am going to be the Grim Organ Harvester on Monday. I think I'll make a sign with these stats and wear it!
KarenInWA
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I am delighted for anyone receiving a transplant. It WILL happen just hang in there. A patient from my unit waited 12 years, yes 12 years. She had given up all hope then the call came! How wonderful was that.
Sadly transplant is not for me so I ENVY all of you who are able to go through the process. Good luck.
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In the USA:
As of today there are 96,012 people waiting for a kidney.
34,417 new patients were added to the wait list in 2010.
16,900 people received transplants in 2010: 10,622 from deceased donors and 6,278 from living donors.
The supply of deceased donors will never meet the ever growing need.
Living donors are making a difference. It improves the chances for everyone who does not have a donor when a living donor donates.
Thank you for these stats, okarol. I am going to be the Grim Organ Harvester on Monday. I think I'll make a sign with these stats and wear it!
KarenInWA
That's a great idea Karen! Lol!
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This last time when I was listed they told me the average wait was 5 to 7 years on the list. I am O+ and managed to get a kidney after only 2 years.
And at the time I too was getting frustrated with hearing about all the people in my clinic that got the call.....people who had only been listed for 6 months to a year. My PD nurse was good at always telling me "your time is coming...."
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When I applied for a transplant, they told me that the Rh factor doesn't matter. The only things that have to match are the ABO blood type and the tissue typing.
(My blood type is AB)
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Sadly transplant is not for me so I ENVY all of you who are able to go through the process. Good luck.
You bring up a point I did not address earlier, but it has always been in my mind - in that thinking of those that can not have a tx for whatever reason. There had been some "on the QT" talk between nurses and some of us who were on the list that, perhaps, it might be a tactful thing to not talk about it openly - and I could understand why. It didn't stop me exclaiming each time I signed off the bii-monthly transplant bloods that "I hope this is the one!" kind of thing.
I do definitely think about it when I go to visit my D unit. I do not drink while I'm there (well maybe a coffee) and try to not "rub it in" to those still waiting, or who can't have one at all - people who I feel so much for - some of them still friends. Now I know that 99$ of them are awesomely (and genuinely) happy for me but all the same I try to be appropriate and considerate about how much freedom I have in so many ways because I don't want to make others feel worse or anything. It's a fine line, because you want to be honest when they ask how you are, and want to share how wonderful it is, but do not want to be insensitive.
A couple of weeks ago I went in on a Saturday afternoon to visit one of the older patients who I knew well - a nurse had clued me in recently that he had not been very happy, having endured various problems, and frustrations. He was very happy to see me and I think did appreciate that I made the effort to come see him and have a chat and catch up. I felt good somehow, even though I also knew that a year ago I would have been in the chair next to Theo and here he was, still there battling away - and too old for a tx. These thoughts went through my mind as I sat there trying to find the right things to say.
Anyway this is a bit OT and I apologise for straying. I suppose the key point would be that there's perspective that needs to be considered in these kinds of situations. I mean Rivy is waiting for that call and frustrated someone got it so relatively soon after being listed, but consider those also there who will NEVER get that call. I have to say, for myself, I am honestly NOT certain how my attitude would be if I never had the hope/goal of a transplant. I am pretty sure I would not be as positive as I am now. I'm so blessed that, even amongst dealing with all of life's struggles related to this disease and various complications, that to even have this wonderful opportunity to get the gift and most of life back.. well it's priceless and well worth the over 4 years I waited.
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When I was a kid, I spent a lot of time at the IWK Children's hospital in Halifax. They had a kidney ward there, and it was called 6 East (I think it's called 6 north now, but I could be wrong). Whenever there was a transplant on 6 east, the pllace would buzz. It was like Christmas. We'd line the hallway when they were taking the lucky person to the OR, and we'd all be bugging the nurses, asking if they'd heard how the person was doing.
I try to keep that feeling going, when I hear of someone getting a kidney, but it's not as easy to do as it was when I was 12.
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Sadly transplant is not for me so I ENVY all of you who are able to go through the process. Good luck.
Thank you for posting this. This is why it is important to advocate for optimal dialysis for EVERYONE. "No Kidney Patient Left Behind!" Tx is great for those lucky ones, but it is a nightmare for others, just like dialysis is fine for some but a horror for others.
I know exactly how my attitude would be if I didn't have the hope of a transplant. It would be a very, very difficult road. And I have to say that just because someone might be on the list today doesn't mean that they will be able to STAY on the list. Too many dialysis patients who are on the list think that they don't have to be particularly careful with their dialysis because they're on the list so will be getting transplanted soon. Well, it doesn't always work that way, and people die every day while waiting on that damn list.
Richard, I was thinking about your conundrum, visiting with old clinic buddies and not wishing to "rub it in." The older gentleman you spoke of...I was wondering...is there a possibility of you meeting up with him outside of the clnic? I'm sure he loves to see you and hear your words of encouragement, but I wonder if maybe taking him for a small coffee or a light lunch or a chat outside of the clnic environment might make you both feel more comfortable. In trying to imagine how I'd feel if I were in his shoes, I think I would be more amenable to such a visit if I were not hooked to the machine. That makes the fact that I am imprisioned and you no longer are just that much more poignant. And you wouldn't be faced with that, either. Just an idea. It's hard to imagine what another person is feeling with any accuracy.
These are complicated issues.
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I thought I saw a thread that said something about things not to say at the tx interview.
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I thought I saw a thread that said something about things not to say at the tx interview.
Yes, there is a sort of "tongue-in-cheek" thread on this subject. It's pretty funny!
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MM - very good point/question.
The real issue is the gentleman in question is a Greek man and his English is quite broken at times. he's a lovely man (well he has his moments - don't we all!) and sometimes I meet him and his wife in the park which is mutually close to where I live and the hospital and that is quite pleasant, but I actually feel that there is a bit of a cultural divide (as well as language) and it's one thing to say hello at the unit or in the park, but I think it would be a little difficult to have a coffee etc (besides he usually has coffee with his Greek mates at the local shopping centre). I know he was very happy that I made the effort to come in and say hello - and that's what I wanted to do because I had heard he was a bit unhappy. I actually think he doesn't mind talking while on the machine but I definitely see your point.
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That's really nice of you to take the time to visit with him. I'm sure he appreciates it very much! Do you get to go by and see him on a fairly regular basis? Is he holding up OK?
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I don't go on a regular basis anymore for a couple of reasons. He's on my old shift, which is Tue/Thur/Sat afternoon - and I'm working for 2 of those days, and usually doing other things on the Sat - plus I really don't want to intrude too much on the staff or patients. I do drop by the unit when I am in for labs or clinic because it's right there, but that's usually a Fri or Mon morning, so he's not around. So I may drop in on a sat afternoon but yeah it's not so much these days. I did make that special effort though because one of the nurses gave me the heads up since she was worried and knew we were friendly, which was nice so I hope it cheered him up a bit that I came along.