Kidney waiting list: Hi all can anyone tell... - Dialysis Support

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Kidney waiting list

goldenboy12345 profile image
14 Replies

Hi all can anyone tell on average how long we have to wait on the transpalnt list, I am about to start dialysis but like most people hope to have a kidney transplant in the near future. I do have a couple of family members and a couple of friends that have offered to be tested but if they are not a match I have been told that you have to go on the waiting list. x

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goldenboy12345
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14 Replies

Hi. I am currently going through the tests to donate to my daughter but if I am not a match I will donate to someone else. Get your family and friends to get tested to see if they can help. There are also people who are live donors, so stay optimistic and all the best.

goldenboy12345 profile image
goldenboy12345 in reply to

hI Ropo i do have a coule of family members and a couple of friend who have offered to donate if they are a match, I have hospital appoiantment this Tuesday and hope to get the ball rolling asap to see if I can find a match. I dont know my blood group yet and I have been told that i must find that out first. My kidneys are now at 12% so dialysis will start very soon. all the best to you and your family and I hope it all goes well.

Sue x

in reply togoldenboy12345

Hi Sue. My daughter has a lower CKD but the Docs are still trying to keep the kidney going: just to allay your fears. When you go to the hospital they will explain everything to you and if you don't understand what they are telling you ask them to explain it so you understand. There is plenty of support offered to you, so your not on your own. Anyone who wants to see if they match you for a kidney donation, will have to apply independently, so just get the phone number and leave it with them. All the best darling and keep positive. x

Annie62 profile image
Annie62

Discuss with your consultant. They should have already asked you if there is anyone who is willing to be tested, they then contact them directly as you are not allowed to be involved as it could be classed as coercion. The possible donor then has to go through testing to find out if they are a match, it is a lengthy process so get the ball rolling asap. Good luck

Annie

goldenboy12345 profile image
goldenboy12345 in reply toAnnie62

hi Annie I do have a couple of family members and a couple of friend who have offered to donate if they are a match, I have hospital appoiantment this Tuesday and hope to get the ball rolling asap to see if I can find a match. I dont know my blood group yet and I have been told that i must find that out first. My kidneys are now at 12% so I am sure that dialysis will start very soon. Thanks for your reply

Sue. x

Stonebroke profile image
Stonebroke

Hi Goldenboy, The average wait for a deceased donor is I believe 3 years. I would have thought the live donor would be a much quicker route for you. If you do not have a match you should have the option of the pairing scheme which worked very well for myself. My wife was not a very good match for me but we went into the pairing scheme and got matched on the first run, I avoided dialysis this way and feel very lucky. Our work up took about 6 months with lots of trips to hospital and tests. Good luck for the future.

goldenboy12345 profile image
goldenboy12345 in reply toStonebroke

Thanks for your reply, I have never heard of the pairing scheme, if you dont mind can you tell me bit more of how that works. Thanks Sue

Stonebroke profile image
Stonebroke

Hi, As I understand it the pooled pair scheme is a nationwide option scheme for couples who are not compatible. We were told there are approx 300 couples in the country with the problem of not being compatible. Every 3 months they run the results and the best matches are paired up, or it can even be a 3 or 4 way swap but this makes it very complicated and a logistical nightmare. I was very lucky and got matched on the first run and had my transplant 6 weeks later.My wife donated a kidney to the other couple and they donated 1 to me. I am now 8 weeks post and everything is going great and I feel like a new man.

goldenboy12345 profile image
goldenboy12345 in reply toStonebroke

I dont have a husband but my eldest son has offered to donate, do you know if he can be swap his for mw to get a match. best wishes to you and I am happy to hear it as all gone well for you, I hope im that luck.

Thanks Sue x

Stonebroke profile image
Stonebroke

I believe anyone who is close to you can be the donor, although you do have to go through a little questioning with the human tissue authority to make sure you have known them a while. thanks

goldenboy12345 profile image
goldenboy12345

Ok thank you all the best. x

Annie62 profile image
Annie62

Well this is really interesting we have not heard of the pairing scheme

Thank you for the information and good luck to you all xx

Kibibi90 profile image
Kibibi90

Unfortunately it's a bit like asking the question "How long is a piece of string?" There is no definitive answer. I waited 15 months but a friend waited 10 years. I think the average wait is 2-4 years so good luck with one of your family and friends being a match.

goldenboy12345 profile image
goldenboy12345 in reply toKibibi90

Thanks Kibbi90 seems like it is luck of the draw just have to keep my fingers crossed. x

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