Place on the Transplant list???

[willowtreewren]

Some folks seem to know how close they are to the "top" of the transplant list. I'm curious about how to find out this information. Does anyone know how to go about learning your place on the list?

 

Aleta

[paris]

Because there are so many factors, it is hard to really know "where you are".  A surgeon told me that with my time on the list "I should be near the top", but we all know blood type, PRA, etc, etc is what determines the match.  One may be "at the top" and there will still be people who get transplants at their center before them.  Wouldn't it be great to have a print out and beable to check names off?    It has been explained to me that the list is more like a diagram with many offshoots of sublists.  Talk with the transplant co-ordinator.  I think,  when you are called as a back up, then you know you are near.  Until then --- we wait patiently -- well, impatiently in my case.

[okarol]

The wait time is why they say "you're at the top" but if no one dies that is a tissue match for you, the lkidney would go to the person with the longest waiting time AND the tissue match.

[willowtreewren]

Thanks Paris and Karol.

Today during a discussion among friends it was suggested that I moderate a discussion on organ donation. Although I'm interested in doing it, I have found myself on an emotional roller coaster just thinking about transplants this afternoon. Don't know if I could handle being in charge of a round table discussion! 

And it got me thinking about the wait....

[Rerun]

I think you go to www.blackhole.org       (Just kidding)  No one knows.  LIST?  there is not a list there is an order and it is all jumbled up.  It is like the Lottery.  That is why I play the lottery instead of being on the "LIST" my chances are just as good!

[Jie]

Aleta,

Please go to here to find your area and then see the waiting time list for your HB blood type.

http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp

From the waiting time list and your HB cumulative time, you will know what spot your HB is on the list.

Besides the blood type, two most important factors are HLA match and waiting time. One HLA match is worth of one year of waiting time (each is one point), and a perfect match is worth of 6 years of waiting time. When a kidney comes, the patient who has the most point is at the top for that kidney.  That is what I understand how the thing is going. If your HB has common HLA, his waiting time will be shorter than the average waiting time.

[okarol]

Aleta,

Please go to here to find your area and then see the waiting time list for your HB blood type.

http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp

From the waiting time list and your HB cumulative time, you will know what spot your HB is on the list.

Besides the blood type, two most important factors are HLA match and waiting time. One HLA match is worth of one year of waiting time (each is one point), and a perfect match is worth of 6 years of waiting time. When a kidney comes, the patient who has the most point is at the top for that kidney.  That is what I understand how the thing is going. If your HB has common HLA, his waiting time will be shorter than the average waiting time.

I went to our state - then put in "Organ by Blood Type" and then added "Waiting Time" and all I got were how many were waiting - which were numbers anywhere from 6 months to 5 years or longer? So how is that helpful to anyone specifically? Your transplant center can tell you that. Maybe I did it incorrectly Jie, please let me know.

[RichardMEL]

This is very difficult because there are so many unknowns.

Let's take the case of two IHD members living in the same country that we all know about: Wattle and me. Now IIRC Wattle is an A blood group (if I'm wrong Sally, I apologise, but the example holds anyway) and I am also an A group. We all know Wattle's wonderful news of now 6 or so weeks back in getting a kidney. She waited just over 4 years. I've been active on the list for 3 and a half years. Going by that simple metric you'd think I'm "near" the top and that in theory I may only have to wait another 6 months or so. However it gets complicated because I do not know anything about Wattle's HLA's (except that she said hers are rare or unique or something). So that throws a real spanner in the works and makes a basic judgement based on the blood group and how long she waited relative to me being mostly irrelevant.

I have been informed that I have matched on donor organs already and obviously the organs went to people higher on the list (ie: waiting longer and/or better match) than me - and that's the way it's supposed to work. I've also had it suggested to me that my particular hospital doesn't accept a lot of organs for one reason or another because they are not considered "good enough" for the patients. To be honest I am not sure I believe that at all though it is true I am not 100% certain how the organ offer process works - I do know the red cross here who co-ordinates the donation process contact the "home" hospital/medical team of potential recipients (as in they call my medical team if they offer me an organ) now maybe it IS up to that medical team if they accept on my behalf before they advise me. I really do not know how that works... but you know what it doesn't really matter. *IF* the medical team make an assessment of the donor organ before they ask me then clearly they have my best interests in mind, and if they think the organ isn't good enough for me, then THAT is good enough for me - I'd take it that even if I have to wait longer that the organ I do get will give me a really good chance at a longer lasting transplant.

Anyway the end result is that you simply do not know where you are. The only concrete thing you can go on, I feel, is that the longer you wait the better your chances are to get an organ - just going on statistics, and that obviously the longer your time on list the more priority you will have in terms that if the blood group and HLA's match and it comes down to wait times then clearly longer is "better"

But, someone could (sadly) pop up as a candidate anytime that is a fantastic match and all that other stuff would be out the door.

When it's meant to happen it will happen - that's my motto

[willowtreewren]

Thanks, Jie.

This really helped.

Karol, I kept adding parameters to the data: organ, wait time, and center. I was able to see how many had been waiting longer than my husband out of the 123 waiting for a kidney at our center. The good news is that there are NONE who have waited longer than 5 years.

The data was current as of August 28, so that is pretty current.

Now I need to look at centers outside our state. The hard part is having time to go somewhere else to be evaluated. Sigh.

But, thanks every one for the interest and comments.

Aleta

[Jie]

Aleta,

Glad you found your way. You can also look at the state waiting list, which may be more important than the center, since they are in the same list to compete for the kidneys.

For others who want to look at the data, just did as Aleta did, keeping adding parameters to get what you need. The important parameters are state, organ, blood type, and waiting time. The waiting time is divided by 8 time intervals. We can also look at the transplants taken place each year, and how many patients are added to the list and how many patients are out of the list (including death).

If one needs to get more detailed data, one can use the option "request data" to request it. It usually takes about 3-4 weeks to get the results back.  One piece of very important information is how common one's HLA is. This information can be obtained through data request. You just need to fill out the request data form, providing your HLA information, and then asking during the last 5 or 10 years, either in your state or the U.S., what percentages of the deceased donor kidneys matched your HLA A pair, B pair, Dr pair, and perfect match within your blood type.

The database also provides a good source of information to look at centers for double lists.  I found some nearby states with waiting times differing for more than 4 or 5 years. So, a lot of patients out there do not do their home work.

Richard made an important point: some centers are more strict to accept kidneys than others. Two centers in Oregon are good examples of it. One is very strict, thus having better survival rates and longer waiting times, whereas the other is less strict, having not so good survival rate, but the patients wait quite a bit shorter. That information can be used to select centers too. But this information is not directly in the database.

[*kana*]

I think you go to www.blackhole.org       (Just kidding)  No one knows.  LIST?  there is not a list there is an order and it is all jumbled up.  It is like the Lottery.  That is why I play the lottery instead of being on the "LIST" my chances are just as good!

You sure got that right!  They say they  give you points for every year but that means nothing really.  My sister got a kidney after 4 mths on the list, being O+ plus her antiboties are sky high.  How the heck did that happen?  There is no top or bottom to the list in my opinion, it is just a random mess.  Either you are lucky or you are not.   

[RichardMEL]

Sorry but I refuse to be that negative about it. It's no where near as random as a lottery because matching is involved. It only appears random because you don't know the details of everyone else on "the list" at any one time.

I try to look at it like this: donor organ shows up and is tested - blood group and HLA's. FOR EACH ORGAN .... the matching is done and the "list" as it were is re-ordered based on the blood group match and HLA's and then time waiting, and all that stuff - thus an order is established. First cab off the rank is cross-matched and hopefully that's OK and they go for it. If not, they go to the second, and so on.

Now, the next organ that comes along will more likely than not be different in some respect - if not the blood group, then almost certainly the HLA's, or it may be Hep C positive or something and thus again the "list" is re-ordered based on that critera.

From that respect the "list" is a constantly changing thing - people come on, people go off (either because they have gotten an organ, or they are off due to health or other reasons) and thus one's relative position is always going to be different.

In the end it comes down to where you sit in relation to others for any particular organ that becomes available - and if you're the best match and you've been waiting 6 months - then yes, you are indeed lucky!

I know I have simplified it somewhat but I think the point is still there that it's NOT a static "list" or a first in, first out ordering or anything like that so you simply CAN'T be told "oh you're 34th in line" because it always changes. Now, you could perhaps ask something like "the last organ I was matched against, can you tell me how many were ahead of me on that particular match?" but even then (and assuming anyone would actually give you a real answer to that) the number is a bit meaningless - because it only relates to a particular organ, at a certain point in time - since then things will have changed.

I think the "kidney lottery" is a much better bet than the money lottery - it's less random, and by Gosh there's a fair chance, soooner or later, that I will win!!!!!! 

[Jessmomto3]

  When I asked a few days before Logan got his kidney where he was on the list they said there really wasn't an answer for that.  They said because it depends on each individual kidney it's a fluid thing and you're not at the same point everytime.  Logan wasn't supossed to get this kidney technically.  It was supossed to go to someone in the Beaumont, Texas area but it fell through with the recipient and so Logan was next on the list.  I don't know whether he was next because of age or HLA typing though.