Paired exchange

Hi

After some advise, both my parents but themselves forward to be tested to see if they could be a donor. Unfortunately my dad was found to only have 56% renal function and was a match but couldn't help. My mum went forward to do the paired exchange as she was not a match and now after 4 months of testing they have said she can't do it either as one of her kidneys has scarring and isn't working at the normal rate. As you can imagine she is devastated, im ok about it as never thought it would happen.

It seems strange that there is lots of talk about counsellors about giving your kidney but nothing if you can't help after having all these tests.

I just want to help my mum as she feels she's let me down and keeps saying sorry and crying. I've told her she did a massive thing being tested and under going months of tests for me.

Not sure if anyone else has been through the same and can offer any help that I can offer her. All she sees is her 30year old daughter getting worse and she let me down, which will all know is silly.

Thanks

Charlene

6 Replies

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  • Hello Charlene, I was very sorry to hear this. I have not been through anything like this and both my parents have passed away now. I know they would have tried to help me out in the way your parents have tried for you. Being a dad myself I know how upset I would be if it turned out I was not able to help my kids. Your mum and dad sound like great people.

  • My parents are the best any body could ask for there my rock. Thanks for responding

    Charlene

  • Hi we went through a similar situation no one from my family would help so my mother in law stepped up, she had 8 months of testing only to be told at the last minute she has some scaring on one kidney so can't donate, we both took this very hard and she was very upset she also felt she let me down. I sent her a thank you card and small gift(a brooch) something she could keep just explaining how much she went means to me and I'm in owe of what she tried to do for me.

    It's been a few months now and things are better the pain of loss gets easier

    You will get through this G x

  • Hi

    Thank you for responding. I took it ok as didn't think it would all work out for some reason, plus I hated the thought of her having surgery.

    What a lovely idea to give her a small gift to remind her of how strong she was for me.

    I'm going through a rough stage at the moment regarding my kidney levels and sickness and loss of appetite but I'm sure it's just a blip that we all go through.

    Did you get a transplant in the end or are you on dialysis now.

    Best of luck

    Charlene x

  • Hi, no unfortunately I didn't get my transplant I've been on the waiting list since November 2015 I've had one call from the hospital for a possible donor very early on due to various compilations it wasn't suitable me as I am only 41 it went to an older person.

    I had a fistula fitted on 5th Jan this year but I haven't started dialysis yet my gfr is 10 and my creatinine is 416 so I feel I have some time before I start dialysis. Up till now I've been working full time I stand most of the day standing and running up and down stairs to stockrooms, but I go 3 days a week from next month, I'm hoping this will take a little pressure off my body and I can stay at gfr 10 for a while longer.

    But I still won't give up on that call. It will come. Every morning I wake up and think today could be the day. I always tell myself when I'm having a bad day, my kidney is on its way it's just not arrived yet!

    Good luck to you G x

  • Your so positive which is the best thing. I to try and stay positive as there are far worse off than us.

    I hope you get that call soon and that going to three times a week keeps you off dialysis for a while longer

    Charlene x

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