How many lists are you listed on and why?

[Gram2Twinz]

  At a recent IL Kidney Patient Seminar I over heard some guests mention that they were on "3 transplant lists". What does that mean? How do they do that? Why? 
Anyone have any answers for me?

[kitkatz]

NONE

[KT0930]

I'm only on one, but I have considered getting on one or two others. Basically, the more lists you're on, the more kidneys you have access to, since one of the factors UNOS uses in determining who gets the organs that become available is how close the recipient is to the kidney. The "rules" say you can be on one list per Procurement area. Here in the eastern US where the states are small, a procurement area is one state. I believe bigger states like Texas and California have several each (those of you out west, help me out!). For instance, I'm in Georgia, and if I wanted to go through each team's testing to get on the list, I could get listed in Florida, Alabama, and Tennessee. About the only things to limit you would be 1) Can you get to the team's hospital in the amount of time given when you get the call? That time can be from 3-10 hours. 2) Will your insurance pay for you to get tested by each team? I can't answer how difficult this would be because I haven't tried it.

Hope this helps.

[okarol]

Mutiple listing:
If you have been listed at a transplant center, you may be eligible to be listed at other transplant centers that are outside your "home" transplant center's organ procurement area. With the transplant waiting times increasing, many people are going to a second or even third transplant center to be multiple-center listed. The possible advantage to this is each program has different waiting times. Waiting times also vary from person to person, such as genetics and antibody levels.

Multiple center listing does not affect your waiting time at your current transplant center. You continue to accrue time at your "home" center, whereas you begin to accumulate time from the date they list you at the other center(s).

In order to be listed at another center, you will need to have an evaluation appointment and meet their transplant team. Each transplant program has its own evaluation process and you may be required to have repeat or additional testing done in order to complete your evaluation.

Jenna was listed at 3 centers. We ended up switching her primary wait time to the hospital 2 hours away, and she ultimately had her surgery there, however, it was a living donor, so we don't know how long it would have taken otherwise. However, she got the call as a back up twice within a month of listing at the other hospital, whereas she never got any calls from the Los Angeles transplant team.

[boxman55]

I am listed at a hospital here in Milwaukee and am looking into also getting listed in Madison which is 2 hours away. Most second listings will accecpt all testing done by the first listing...Boxman

[paris]

Three. Two in my state.  My first centers average wait is 6 years. The center 3 hours away is 2 years. They share all my tests, etc.  I had to make a couple trips to meet with the transplant team, but it was  very easy to get listed at another center once you are on the "list".

[kellyt]

I was told by my insurance that multi-listing is a good idea.  I will probably list in San Antonio and Dallas, but I need to talk to my neph first.

[paris]

I did it all on my own. Contacted the transplant center, told them where I was listed and who my local neph was. They called him  and the other transplant center to have them fax my records (no cost to me).  Easy as pie------the ONLY easy thing in the transplant process!   Good luck!

[okarol]

I did it all on my own. Contacted the transplant center, told them where I was listed and who my local neph was. They called him  and the other transplant center to have them fax my records (no cost to me).  Easy as pie------the ONLY easy thing in the transplant process!   Good luck!

Same here. I got online, looked at the stats for transplant centers nearby, contacted them directly, it was pretty easy.

[kellyt]

I was told that I could possible "save a year" just by listing in Dallas.  ?  I may have to try that!

[oswald]

being double listed or triple listed or more offers more chances of getting a kidney.  its like playing the lottery, the more tickets, the more chances of winning.  i was double listed and could've been on 15 more lists as long as i was 2 hours travel time from the hospital.  it all depends on where you live.