How do you know where you are on the list?

[Deanne]

Some of you have stated you're at the top of the list. How did you find this out? I've called my transplant center before to ask where I am, but all they would tell me is how the point system works. You get one point for being activated on the list, one point for each year on the list, blah blah, blah. The wouldn't tell me what that means as far as when I might be called. I get a letter once a year stating the average wait time. At first it was 2 - 2.5 years and the latest letter (almost a year ago) said the average time was about 3 years. Either way, I shouldn't have too much longer to wait, but it makes me curious about how people know where they're placed on the list relative to other people.

[Dman73]

They generally don't tell you because it raises false expectations anotherwards being at the top of the list does not guarantee that you will get a match. Someone being at the bottom of the list with high antibody's, if they find a perfect match for them will get the kidney before the person on top of the list.

Be patient ... you will get the call when you least expect it.

Good Luck!
 

[Rerun]

Hang in there.  It will happen.  Just stay healthy so when you are called you can do it.

             

[Deanne]

I don't think I'm being impatient. I didn't intend to come across that way. I'm doing well on dialysis, so waiting doesn't seem like such an ordeal right now. I'm just curious about how some people seem to know they're "at the top of the list." Do some centers give out that type of information? Given the average wait time where I live and my transplantability (PRA = 0, Type A), I should be called fairly soon.

[ToddB0130]

I'm thinking many of these 'top of the list' folks are basing their response on the wait time they were told (i.e, if you were to 'speak that way' it would be because you were told the average wait time is three years and once you were close to that wait time,  you'd be saying you're at the 'top of the list')

Does that make sense ?  I don't think anyone can tell anyone where they are (nor would they) ..........As someone else mentioned above, the kidney transplant list is a little different than others.  Lots of variable, which I am an example of.    When I would call my transplant coordinator, she would say 'the wait is about 4 to 5 years'.    And in November 2013 (slightly less than two years after I got on the list),  I got a call for a perfect match donor.   So it really does depend.

As was said upthread,  stay healthy and try to get prepared (if your transplant center offers PRE-transplant support groups .......GO,  I repeat GO) .......... I will admit I was not as prepared as I might have been and those pre-transplant support groups could've made the difference.  And staying healthy is KEY ....  When I got the call, after they were done with all of their checking out of the kidney,  I got another call saying 'Time to come in now.  We need to make sure YOU'RE ready for the transplant' ........scary to think there might be something about your present condition that might make them 'call the whole thing off'

GOOD LUCK ........your time is coming soon !

[iketchum]

I think 'Top of the List' means nearing the top of a certain transplant centers patient list. I have just transferred from a large patient pool center to a smaller pool center and was told I would be close to the top of their list due to my wait time I already have.

[Deanne]

With those parameters, I feel pretty confident in saying that I'm near the top of the list then.  Now where did I leave the phone? I'm sure it's going to ring soon....
 

[okarol]

Since they don't know the tissue match of the person who is going to become a deceased donor, they can only base it on wait time.
The wait time here in Los Angeles is 10 years for type O.
And with a PRA = 100%, Jenna's wait could be much longer.
I like your odds, and hope you get your miracle soon.

[RichardMEL]

Maybe it should be more accurate to say "the top of this tx center's list for those with your HLA's" or maybe just blood group, because really there can be no "top" of the list for anyone, because really in my view, each kidney that comes along will match a specific blood type, then HLA's, and if someone is a rare set, then they could well be at the "top" of a list for time waiting, but unfortunately still waiting for that specific match that is good for them to come along.

[okarol]

With those parameters, I feel pretty confident in saying that I'm near the top of the list then.  Now where did I leave the phone? I'm sure it's going to ring soon....

And ring it did!! Three days after this post! 

[RichardMEL]

Karma