The Wait How Long

[Alisa]

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

[jbeany]

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.

[angela515]

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.

[renal30yrs]

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.

[angela515]

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.

[RichardMEL]

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!

[angela515]

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.

[okarol]

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.

[Sluff]

Thanks once again Karol, you really do your homework.