Backlist of transplant

[Colin_CX]

Hi everything, I was exciting last night that I was told there was a kidney potentially compatible for me. They told me I'm on the backlist of that kidney, and they were testing my blood. After 6 hours they told me it's a match and they have to wait result from people ahead of me. This morning at 7am they told me it was accepted by people ahead of me. Well, though I hope I get it but I guess it's fine since it means I'm already on very top of the list? Also I'd be curious how many backlist have everyone went through before getting a kidney.

[AndrewT]

Dear Colin,

I don't know, quite How, this system 'Works' exactly....However I can Tell You that, unless 'Everything' has changed in the last six years, you ARE Likely to get a new Kidney soon. My experience was that Two 'Potential' kidneys failed- or were Not 'Compatible- then there was a Question Mark- over my Health- then I WAS Transplanted.....All 'This' was in July 2013. Ok it has NOT been a 'Bed Of Roses' but the Kidney is working Well and I remain Dialysis Free.

You could always 'Ask', your Doctors/ Consultants, who will refer you to the Transplant Team, who will want an 'Update' on your Health and ask your Doctors/ Consultants.....🤷‍♀️. My, fairly 'Educated' Guess- regarding a Transplant-, is Probably Quite Soon....Sorry but that's the Best that I can offer. Before you, possibly angrily, tell me that's 'Not good Enough'...I KNOW it isn't and I'M genuinely Sorry about that.

If you DO want, to discuss, Anything more or want to ask about, the actual, Transplant then please Feel Free Colin. The Procedure might, well have, 'Changed'/ Been 'Altered' very Slightly- in the last six years- but only in terms of Nomenclature- but then Aunties Ingrowing Toenail was 'Done' Today slightly Differently to how Uncle Pauls was...two years before.

As the Australians, might say, 'Hang in There Sport'....

AndrewT

[Dara3351]

I was called as a back up once...

[WYOAnne NKF Ambassador]

I know they try to match the donor kidney as closely as possible to the recipient. When I was called I was #1 because it matched my tissue so closely. My donor kidney was a 4/6 match. And here I am 20 years later with a fantastic kidney that is still going strong.

[AndrewT in reply to WYOAnne]

Great news Anne, I'm 6 and a half years now. It looks like I'm becoming Diabetic now though....BUT my Kidney Function remains good- so far anyway.

[WYOAnne NKF Ambassador in reply to AndrewT]

I know I have been tested several times for diabetes. Each time it was negative. Even if I was found to be diabetic, it could probably be controlled with diet.

In the last 20 years all kinds of thins have popped up regarding my health. My creatinine is a steady 0.9 - 1.1. I can deal with everything else as long as my new kidney keeps doing what it is suppose to.

Prayers Andrew! Hope all continues to go well. Let us know if tests prove you to be in early diabetes,

Take care

[Gardner-NY]

HI Colin_CX, My spouse 11 months ago got a call that a person was in a bad accident and actively dying and a multi-organ donor. The day after getting this call, the person had passed and one of their kidneys and pancreas went to one person that matched and needed both organs. We were told the other kidney was first being offered to two people before my spouse. So I thought, this was not going to happen, but the next morning at 5:45am we got the call that the organ 'with high risk behaviors' was being offered, and my spouse knew how I felt about this and the behaviors are 'high risk' and the organ is thoroughly checked out and we made the decision to take it. So 11/28/18 my spouse went into surgery at 3pm and I was by his bedside at 9pm and for 2 days he kept doing great things with this new kidney. So we did not tell anyone until it was a sure thing that he would be in surgery getting the organ, 'then' I called our family far away in another state the news. I hope things work out well for you.

[KathleenMA]

Hi - I was called in February 2016 and told that they had a donor and I may or may not get the call sometime in the middle of the night to come up. I didn't, The coordinator called me in the morning and said the kidneys went to numbers 1 or 2 on the list and I was number 4. I asked how often this could happen and she said she had one patient that got called 6 times and then got the transplant on call #7 - I can't even imagine that. But I got a second call in June of 2016 and was #1 on the list. Everything is going great 3+ years later.

[stephanie904]

You are never at the top or bottom of the list. The organs go to the patient that best matches the antibodies of the donor.

Where you fall on the list can be different with each donor.

I was called 1st time, but didn't get the kidney.

The 2nd call I was 3rd on the list. I figured I wouldn't get it since there are 2 kidneys & 2 people ahead of me.

Well, I did get one of the kidneys. Transplant team said it was almost a perfect match.

So getting a kidney fast isn't as important as getting one that "matches" your antibodies the best.

I hope a donor comes along for you soon. My pre-transplant coordinators were awesome. They explained everything about the kidney when I got the call.

Please talk to your pre-transplant staff if you still have questions.

There's so much to learn & they still keep teaching me new things. But now it's from my post-transplant coordinator.