Knowing your place on the list?

[karen547]

I have noticed a few of you saying you're at a certain number on the transplant list and was wondering how you find that out? I thought it was confidential?

[donnia]

I was wondering about that too....

[Joe Paul]

My transplant coordinator told me there is no real number to the list. She said it all comes down to the best person to match the donor.

[Romona]

I don't know how anyone can know a place on the list. I don't know how you could determine that. It comes down to who matches.

[KT0930]

My transplant coordinator told me there is no real number to the list. She said it all comes down to the best person to match the donor.

That was my understanding, as well. You may be #1000 on the list, but if a donor comes up who's a 6 out of 6 match for you, then you get it. My neph kept telling me to call my coordinator and bug him about where I was on the list, and three days after I called him and left a message, I got my first call. A month after that, I got a second. Maybe it's more a matter of he wanted me in the forefront of their minds? My coordinator never did return my call, though. 

[Romona]

My pre-transplant coordinator encouraged me to call once in awhile and check in. She said that was helpful to know I was still interested and let them know if any kind of medical problems had cropped up. I was only on the list 6 weeks. I should have called when I found out I had a UTI. When they called me I relayed the info to them and the surgeon decided since I had been on an antibiotic for almost a week, he wanted me to come anyway. They tested my urine and I was cleared for surgery.

[livecam]

There isn't really a way to know where you are on the list other than to interpolate the odds we are given at listing time by blood type, metropolitan area, and transplant center.   I can say that I had hunches or gut feelings at certain times during my wait with some really strong ones the week of the transplant.  Two days before the call came I had a strong feeling that the time was near and that time I was right.

[kitkatz]

It sounds like that list sucks!

[Krisna]

I've been on "the list" three times.  Here is the way I have understood it to work according to the way it was explained to me and my family:

I am rh A+ which according to my transplant team is the most common blood type of the transplants done in my region.

I have an extremely common perfect match making it likely I will get a 6 antigen perfect match in a short period of time.

When a kidney becomes available it is matched to the best possible recipient listed.  Where you are on the list doesn't matter much if you are the best possible match!  Some people are on the list for many years because they have an unusual match and others only have to wait for a matter of months.  I wasn't anywhere near the "top" of the list when I got any of my cadaveric transplants but I was the best match for them.  Having a 6 antigen perfect match means that not only did the blood type and antigens match but the antibodies did too!  That bumped me up higher than anyone else for those specific organs.  If I had been unable to accept any of them for some reason then they would've gone to the next best match.  The goal is to put organs in the person that they will most likely work the longest and with the least amount of trouble. 

With my second transplant I was on the list for abt 3 months.  With the third I was on the list for abt a year.  The last one I was listed abt 8 months.  I have only ever listed in my own region but I know that my second transplant was flown here from Maine and the guy was the same age as me at the time, 17.  The last two came from my state but I don't know anything more than that.

I would ask my transplant clinic or search online if I were unsure or confused abt how things on the list worked. 

I found the UNOS website too.  You can probably find answers there.

www.unos.org

[Krisna]

My pre-transplant coordinator encouraged me to call once in awhile and check in. She said that was helpful to know I was still interested and let them know if any kind of medical problems had cropped up. I was only on the list 6 weeks. I should have called when I found out I had a UTI. When they called me I relayed the info to them and the surgeon decided since I had been on an antibiotic for almost a week, he wanted me to come anyway. They tested my urine and I was cleared for surgery.

Yes, my transplant clinic said to call if we went out of town and wouldn't be able to get back within a few hours.  And whenever I were sick.  They flag your name so that they don't waste time calling you.  There is a time limit on organs.  When I would go out of town I would give the date and approximate time I would return and also a number I could be reached at in case it was a perfect match. 

It is important to let them know if you are going to be unreachable or if you have a medical problem, big or small. 

[RichardMEL]

There isn't really a way to know where you are on the list other than to interpolate the odds we are given at listing time by blood type, metropolitan area, and transplant center.   I can say that I had hunches or gut feelings at certain times during my wait with some really strong ones the week of the transplant.  Two days before the call came I had a strong feeling that the time was near and that time I was right.

I hope that works for the rest of us. I have had a feeling this year would be my year (been waiting 2 years as of this week). I am putting all my positive energy into it and I very much want it.  I can't say i've had any real gut feelings apart from a general "I feel this is it" sort of thing. Maybe wishful thinking but I hope so.

At the start of the year there was a guy in the unit who had the call 4pm new year's day... but the kidney hadn't woken up.. he had been waiting 2 years also and was around my age.. gave me a lot of faith (he wasn't A+)

Unfortunately a week later the kidney totally failed and it was removed. I was totally heartbroken for him.

[GuyIncognito]

I use to call my coordinator once a month to see if I had moved up, however I've stopped that as it was too frustrating... I've been number 11 on the list for over a year... I've lost faith in the list and I'm now proactively looking for a live donation.

In my opinion O type kidneys should only go to O type recipients.

[BigSky]

The list is based on a point system.  The more points you have, the higher on the list you are.

Points are based on wait time on the list and what PRA one is at.

More than one person can actually be at the top of the list as not everyones antigens are the same.  This is why some people just on the list can get a tx before some that have been on the list years.

From my understanding also is that if a kidney comes up it goes to whomever is higher on the least with at least 1 antigen match.  Even if the kidney matches someone lower on the list with 2 antigens the person who matches with at least one and has more points is considered the primary.

The only exception is a perfect match, in which it goes to whomever and wherever they are on the list.

According to national stats most tx's are only a 1 antigen match at 30% followed by a 2 antigen match at 25% then 0 antigen match at 14% of tx's done.

[Krisna]

The only exception is a perfect match, in which it goes to whomever and wherever they are on the list.

This is why I still consider myself extremely lucky...even now that I'm back on the machine!  Three perfect match transplants!  Oh yeah, somebody up there likes me!   

[mariannas]

I use to call my coordinator once a month to see if I had moved up, however I've stopped that as it was too frustrating... I've been number 11 on the list for over a year... I've lost faith in the list and I'm now proactively looking for a live donation.

In my opinion O type kidneys should only go to O type recipients.

I was told that they were.  When I went through the orientation, one of the coordinators mentioned that even though Os are universal donor, they only go to other Os.  I don't know though, I could be wrong!

[RichardMEL]

I use to call my coordinator once a month to see if I had moved up, however I've stopped that as it was too frustrating... I've been number 11 on the list for over a year... I've lost faith in the list and I'm now proactively looking for a live donation.

In my opinion O type kidneys should only go to O type recipients.

Sorry given the nature of the list and how it's run I don't know how you can be given a quantative number like that???

[st789]

Jezzzz, talk about dramas.  Three kidney transplants!!!

[okarol]

Since wait time is the first consideration, you can find out how many other patients have been waiting by asking your coordinator. But since tissue matching is also considered, you might have the most wait time, but the organ is going to go to the person who is a match.
This is from UNOS website:
When a deceased organ donor is identified, a transplant coordinator from an organ procurement organization accesses the UNOS computer. Each patient in the "pool" is matched by the computer against the donor characteristics. The computer then generates a ranked list of patients for each organ that is procured from that donor in ranked order according to organ allocation policies. Factors affecting ranking may include tissue match, blood type, length of time on the waiting list, immune status and the distance between the potential recipient and the donor. For heart, liver, and intestines, the potential recipient's degree of medical urgency is also considered. Therefore, the computer generates a differently ranked list of patients for each donor organ matched.

The organ is offered to the transplant team of the first person on the list. Often, the top patient will not get the organ for one of several reasons. When a patient is selected, he or she must be available, healthy enough to undergo major surgery, and willing to be transplanted immediately. Also, a laboratory test to measure compatibility between the donor and recipient may be necessary. For example, patients with high antibody levels often prove incompatible to the donor organ and cannot receive the organ because the patient's immune system would reject it.

Once a patient is selected and contacted and all testing is complete, surgery is scheduled and the transplant takes place.

You can also find more information about organ donation on the U.S. Department of Health and Human Services Web site for Organ Donation at www.organdonor.gov.

[okarol]

Here's another related thread about blood type and wait time http://ihatedialysis.com/forum/index.php?topic=1138.40

and FYI - O kidneys are given to O patients first.

[BigSky]

and FYI - O kidneys are given to O patients first.

Are you sure? 

I was told that O's only can get from O's but that O's can give to anyone and when a kidney (type O) comes up it goes to whomever it matches regardless of blood type.  I was told the wait time for O's can be longer since other groups can match the O kidneys and kidneys of their own blood group while O's only can match against those that are O.

[okarol]

and FYI - O kidneys are given to O patients first.

Are you sure? 

I was told that O's only can get from O's but that O's can give to anyone and when a kidney (type O) comes up it goes to whomever it matches regardless of blood type.  I was told the wait time for O's can be longer since other groups can match the O kidneys and kidneys of their own blood group while O's only can match against those that are O.

It's true that other blood types can accept O kidneys, but that's not how they are allocated.

This is the current UNOS Policy (last dated December 18, 2007) www.unos.org/PoliciesandBylaws2/policies/pdfs/policy_7.pdf

Blood type O kidneys must be transplanted only into blood type O
candidates except in the case of zero antigen mismatched candidates (as defined in Policy
3.5.3.1) who have a blood type other than O.  Additionally, blood type B kidneys must be
transplanted only into blood type B candidates except in the case of zero antigen
mismatched candidates (as defined in Policy 3.5.3.1) who have a blood type other than B. 
Therefore, kidneys from a blood type O donor are to be allocated only to blood type O
candidates and kidneys from a blood type B donor are to be allocated only to blood type
B candidates, with the exception for zero antigen mismatched candidates noted above. 
This policy, however, does not nullify the physician's responsibility to use appropriate
medical judgment in an extreme circumstance.

[petey]

we, too, were told that O's can go to all blood types but, of course, that O types can only receive O's.  That's how it was explained to us to answer the question of, "Why is the wait longer for an O recipient?"   Marvin's type O-positive.  We've always thought that sucked!

[slk76]

and FYI - O kidneys are given to O patients first.

Are you sure? 

I was told that O's only can get from O's but that O's can give to anyone and when a kidney (type O) comes up it goes to whomever it matches regardless of blood type.  I was told the wait time for O's can be longer since other groups can match the O kidneys and kidneys of their own blood group while O's only can match against those that are O.

THIS IS NO LONGER TRUE!!!!!!!!!!!!!!!!  Cedars Sinai in LA does ABO Incompatible transplants.  My friend just had one last week!  His dad was not his blood type so he had both IVIG and Plasmapheresis and then had his transplant!! He was just released from the hospital today with a creatinine of .8!!!!!!!

[paris]

and FYI - O kidneys are given to O patients first.

Are you sure? 

I was told that O's only can get from O's but that O's can give to anyone and when a kidney (type O) comes up it goes to whomever it matches regardless of blood type.  I was told the wait time for O's can be longer since other groups can match the O kidneys and kidneys of their own blood group while O's only can match against those that are O.

THIS IS NO LONGER TRUE!!!!!!!!!!!!!!!!  Cedars Sinai in LA does ABO Incompatible transplants.  My friend just had one last week!  His dad was not his blood type so he had both IVIG and Plasmapheresis and then had his transplant!! He was just released from the hospital today with a creatinine of .8!!!!!!!

Yes, many centers are doing ABOIncompatible transplants with a living donor, but I think the original question is in regard to receiving a kidney from the "list".  If I get the "call", it will have to be an "O".  My surgeon did tell me last week, that with my time listed and PRA, I am sitting up high on the list, but the PRA will prevent me from actually being called.   Good news/bad news!   It is all a roll of the dice,isn't it?

[okarol]

Pediatric patients, patients with high PRA's and living kidney donors are all given points to elevate their status on the wait list.