I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: boxman55 on February 04, 2007, 08:11:54 AM
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After hearing that a recent new member received a cadaver donation after being on the list for 12 months I am wondering how long members have been waiting and what blood type you are and if you think the wait time is based on your blood type. I am o+ and not on the list yet. Hope to be this month. Boxman55
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Since blood type O (+,-) is the universal donor (meaning everyone can accept an O blood type organ), we O patients usually have to wait the longest. But that's not always true.
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Waiting for my first transplant I was told there was a 2-3 year wait. I am also O blood type.
However due to one of many incompetent things of my social worker at the time I was not put on the list in the beginning. :banghead;
Once a nurse realized this she got me on the list and within 6 months I was getting the transplant.
I have to go out and finish my workup in Spokane this month and they had told me that the wait time was 2-3 years again.
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what is pissin me off is, when I introduced myself to IHD I mentioned that the transplant surgeon told me "because of my diabetes my life expectency is 4-5 years without a transplant." I started dialysis Aug '06 so according to him I have 3-1/2 to 4-1/2 years left and he still hasn't put me on the list. My so called final test which was a cat scan was on 12/13/06 and my meeting to discuss the results is on the 13th of this month. It is very frustrating. But a little off topic still want to know your wait time and blood type Thanks--Boxman55
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I have been on dialysis for eight years already and been evaluated for transplant once already and turned down due to weight issues. Now am being reevealuated and they are finding new things to go look at. Not listed YET! I find this very frustrating to say the least!
I hate the waiting.
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I am O+, I was told the wait was average 3 yrs here. I was waiting 2yrs and 14 days when I got the call.
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I am O+, I was told the wait was average 3 yrs here. I was waiting 2yrs and 14 days when I got the call.
Thanks for the input and congrats how are you feeling? Boxman55
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Different states have different average wait times. Michigan has about a 5 year wait right now for kidney. 2-3 years for kidney/pancreas.
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In Canada the waiting list is a LOT longer.
I am type O+ and I have been waiting since 2001.
But here is the reason why so long. It isn't just blood type that makes a person wait so long on any waiting list. But also (I know some members here can clarify more as I don't know the correct terms) the antigens. I have had many blood transfusions so far and I had a transplant before.
In 1990 I had one after ONLY waiting for 2 months of dialysis.
But because I had one before they said that my next wait on the waiting list would be longer. Boy were they right!! :(
6 years and waiting ... Back in 2004 I heard the wait time was 8 years on average in Ontario Canada..
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Is it just me, or does it seem like there are an aweful lot of people on dialysis (at least on this thread) that have type O blood?
Anyway, I am type A- and was told that my wait here in Florida would be 2-3 years. I've been on dialysis for 9 months, and I've never had a transplant. I'm not quite on the list yet, but should be any time now! *fingers crossed*
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The answer is waiting time is geting longer and longer for everyone across the world. From the tme I staeted dialysis the number if patients must have increased 10 fold :-[
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The answer is waiting time is geting longer and longer for everyone across the world. From the tme I staeted dialysis the number if patients must have increased 10 fold :-[
What was the wait time back 30 years ago?
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Back then organ transplantation was a relatively an exotic procedure. There weren't too many transplant centers here in the US. I remember most blood groups didn't have to wait for more than 3 years. Before the creation of UNOS each surgeon or physician had far greater discretion.
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Is it just me, or does it seem like there are an aweful lot of people on dialysis (at least on this thread) that have type O blood?
Anyway, I am type A- and was told that my wait here in Florida would be 2-3 years. I've been on dialysis for 9 months, and I've never had a transplant. I'm not quite on the list yet, but should be any time now! *fingers crossed*
Do you know your PRA level?
Luckily for me mine was 0%, :2thumbsup; Which i'm shocked b/c everything that can raise your PRA, I have had... Previous transplant, 2 pregnancies, Blood Transfusions... Crazy!
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In 2003, when Jenna (O+) began dialysis and was listed here (near Los Angeles) - the wait time was 4 to 6 years.
At her one year transplant evaluation follow-up the wait time for her was still 4 - 6 years.
At the two year follow-up the wait time was 5 - 7 years.
My husband, an economist, wanted an explanation. The coordinator basically said the list is growing exponentially.
In Feb. 2006 we multi-listed Jenna near San Diego. The wait time was 3 - 5 years, so we transferred her primary wait time
(which was 2 yrs. 3 mo.) there.
She was called as 6th and 2nd back ups for a kidney during the first 6 months there.
We had 2 living donors evaluated in San Diego (2 altruistic women) over 5 months. One was a match. Transplant done 1/16/07.
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I'm AB+, universal recipient. I have been on dialysis for about a month now. I got on the waiting list on Monday, Feb 26th.
I do have people willing to donate their kidneys, but I'll update on how long it takes. I call my insurance case manager and transplant coordinator almost everyday making sure I'm on the top of the minds. I think its making the process go faster.
:clap;
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Wait time has a lot to do with where the transplant center is. If it is in an area with lots of people on the list the wait will be longer. If a person lives in an area with a large list it makes sense to double or multiple list in other areas so the pool of donors there are available to you as well as those at your home center.
Blood type is the other big factor with type A being a very good kind to have.
Someone earlier talked about life expectancy. That depends on how you take care of yourself on dialysis. A compliant patient who manages the kidney issue and any others is going to do alot better than someone who regularly overloads or doesn't show up for treatments. It is kind of sad but when I started someone looked up the statistics and gave me 26 months to live. That was more than 8 years ago and unfortunately that person is no longer with us.
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Is it just me, or does it seem like there are an aweful lot of people on dialysis (at least on this thread) that have type O blood?
Anyway, I am type A- and was told that my wait here in Florida would be 2-3 years. I've been on dialysis for 9 months, and I've never had a transplant. I'm not quite on the list yet, but should be any time now! *fingers crossed*
Do you know your PRA level?
Luckily for me mine was 0%, :2thumbsup; Which i'm shocked b/c everything that can raise your PRA, I have had... Previous transplant, 2 pregnancies, Blood Transfusions... Crazy!
Sorry it took so long to reply! lol I didn't think anyone would reply to what I said! No one usually does...well, except Angie! lol She replies all the time and makes me feel better!! Anyway, I have NO clue what my PRA level is. I'm still not on the list yet. They wanted some past medical paperwork from my hematologist and other doctors, but my social worker at the dialysis center sent it like 5 times. I don't know where they keep putting it, but it's getting annoying!! My DR finally said yesterday to send it through the mail instead of faxing it and make it so that someone has to sign for it so that we know that they got it. It's ridiculous!! Anyway, I've never been preg nor had a transplant, but I have had 1 transfusion about 3 years ago.
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Your waiting time is affected by anumber of factors 1) your location, 2) ABO blood group, and of course you have had transplant in the past.
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well when I started this post I wasn't on the list yet. I still am not on the list. So the wait before the wait continues----Boxman55
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you have had transplant in the past.
How does this factor into the wait time?
kelli
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you have had transplant in the past.
How does this factor into the wait time?
kelli
Usually your PRA levels will go greatly higher. As you know high PRA levels= harder to match
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In the West Coast in Canada the wait time is 7 years...I am O+....and i was evaluated for transplant but at the end it didn't work out...just bad luck
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Yes, it is now eight years in southern California for O+. I will be waiting forever!
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we are in Colorado. First time my son got a kidney, we were on the list for 2 weeks. Of course, he was 4, and it was his
first transplant, and he is type A.
Now he is 18, his pra is 50, and has been on list for about a year now.
His girlfriend-which he sat next to in dialysis for 4 months, (thats another story) is type A, and she
got her kidney after 1 week on the list. My Son's name has come up a few times, but that PRA continues to
knock him out of play. Sherri
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Sorry I am very confused. My transplant cooridnator told me that she cannot tell me where or what number I am on the list. All I know is that I was approved for transplant and have been having my monthly antigen bloodwork for the last 8-10 months now? How do I find out more info. Is this just a Canadian thing?
Alisa
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Alisa, we don't know our exact number on the list. When we are talking about wait times, we are talking about statistical averages. Some places have a much shorter average wait time than others. I'm trying to get on the list in Michigan. The average wait time is 5 years. That only tells me that most of the people in Michigan have to wait that long before they get a transplant. The last person from my center to get on the list only waited a month because he was a perfect match for someone. Another woman at my center has been waiting for over 6 years.
As the saying goes, there are lies, damned lies, and statistics.
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Nobody ever has an exact "number" on the list as thelist is constantly changing everytime an organ becomes available. When I got the call for a kidney, I know I was directly at the top of the list at #1 because it was a perfect match, means I would go directly to the top, however minutes before that info was entered I could of been 10,000 or whatever.
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Don't count too much on whatever these coordinators have to tell you. I was told I was number 3 in my blood group almost 3 years ago and yet still dialyzing.
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They should of never gave you a specific number renal, nobody is a specific number as I said the list changes everytime an organ's info is put into the system.
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hmm I've done a search and still am not clear about what these FRA levels refer to???? I doubt it is something to do with Frankfuirt... I wish they were though.. mmm.. hot dogs :)
Anyhoo... A+ here, on the lise approx. 2 years (I am not 100% certain when i was put on the list).
I've heard various reports as to how long the average wait is down here.. anything from 3 to 7 years... but you know it's just that.. an average.. you could get a call tomorrow or not for the next 10 years (but I bloody well hope not!)
Wishing everyone gets the call sooner rather than later!
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It's PRA levels not FRA levels, Richard. And they have to do with matching you to someone else. High PRA levels makes you a very hard match, and low PRA levels makes you an easier match. I forgot what PRA stands for but the A Is Antigen.
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What is a PRA?
PRA stands for Panel Reactive Antibody. It is a blood test that is routinely performed on patients waiting for kidney transplants. It is a way of measuring the anti-human antibodies in the blood. A person's PRA can be anywhere from 0% to 99%. Your PRA represents the percent of the U.S. population that the anti-human antibody in your blood reacts with. For example, if you had a PRA of 25%, then the antibodies in your blood would bind to the tissue types of 25% of the people in the population.
How does the PRA effect kidney transplantation?
If a patient has a high PRA, then his blood contains antibodies that react with a large portion of the population. Therefore, a large portion of the population cannot be a kidney donor for him. As a consequence, patients with a high PRA usually wait much longer for a kidney transplant than patients with a low one. The following table shows data from the most recent UNOS annual report (which keeps track of national transplant waiting times, among other things):
Peak PRA Portion of Kidney Transplant Waiting List Median Waiting Time before Transplant
0 - 19 60% 490 days
20 - 79 21% 1042 days
80+ 19% 2322 days
As you can see, for patients placed on the kidney transplant waiting list in 1992, those with a peak PRA over 20, which represented 40% of that years' kidney waiting list, median waiting times were 2 to 5 times longer than for patients with a low PRA. A substantial portion of the patients with the highest PRAs will never get transplanted without some treatment to reduce their antibody levels. The problem is especially frustrating for patients with a live kidney donor, since their waiting time could be very short were it not for the positive crossmatch.
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Thanks once again Karol, you really do your homework. :2thumbsup;