Living donor dilemma

[newyorksnow]

Trying very hard to be objective about this and I just can’t. I’m going to fall out with (extended) family members for my views, if I choose to share them, and the two friends that I have told know my family history and understand my standpoint.

My sibling contacted me last week with the news that eldest child (young teen) needs a kidney transplant.
Sibling has requested that “all family members” submit to testing as a potential live donor.

I know that statistically it would be unlikely that any of us would be a good match due to diverse genetic backgrounds, added to that I know that some health conditions are not compatible with live donation.

I have a difficult relationship with sibling and very low contact. My children are all 18+ with the youngest having just finished a levels. None of them have any meaningful relationship with either my sibling or their children who are late primary age & young teen.

I’m already getting passive aggressive reminders from my parents & sibling asking whether I have contacted the transplant service and whether I have spoken to my children about it (eldest is away travelling, middle is recovering from an accident with two broken bones, youngest has a form of CP)

I don’t want to help though. I have no idea of the urgency of the transplant as my sibling has told me nothing until last weekend when I had a WhatsApp message that had been sent to everyone.

My husband has stated a hard no to any part of the discussion with our children.

I’ve been trying to understand the donation screening process and if you are really able to step back at any point, even if you are a suitable donor medically.

I don’t want to waste NHS time and resources when I know I wouldn’t donate or encourage my children to do so. I know they are adults but they are also aware of the horrible family dynamics at play here.

I am most acutely aware that a young teen may be gravely ill and her parents are doing everything they can to make things better.

I’m certain that I would not put my sibling in the position that they have me but I’m in the fortunate position that I haven’t had to.

I have no desire to have a closer relationship with my sibling so this wouldn’t be an opportunity to reunite the family over a selfless act.

I’m horrible, but my hardness comes from bitter experience.

My kidney donation social worker - who specialises in assessing potential kidney donors - said that she finds it incredibly hard to recommend anyone under 25 because she just feels it's too big a decision for them

When my daughters were asked the person on the transplant team we spoke with said even before they were tested they’d be a very last resort because they were so young.

Oh dear lord.

O can donate to A, B, AB and O
A can donate to A and AB
B can donate to B and AB
AB and donate to AB

So if the recipient is O, then a parent with A cannot donate to them, but a child with O can donate to them.

Which is exactly the situation in my family.

you are talking about blood donation.

There blooming will be if you have problems with the other one!

It's not likely, but it's not impossible. There is also the factor that if you donate to someone outside the family, you won't be able to do so if your immediate family need it subsequently.

No, I'm talking about kidney donation.

https://www.kidney.org/transplantation/livingdonors/what-blood-types-match

Well done for standing up to them, I hope there isn’t a huge fallout from this.

it is your body, your future and this decision does not just affect you, but your children too.

And BTW, it's not just blood group that is tested for in the matching process - there is also tissue typing, which tests for HLA proteins and HLA antibodies.

So even if two people have the same suitable blood group for donating to a particular recipient, one may be a better match than the other.

You don't need a perfect match to donate, but the better the match, the lower the risk of rejection.

You CAN donate to someone who is a completely different blood type to you, but the recipient may well have to have treatments to lower their blood antibody levels.

And just to confuse things, people's antibodies can change over time, so they do serum crossmatches several times including just before surgery.

I know someone who donated a kidney to someone very close to them. The physical recovery was so horrid she said she actually wouldn’t do it again, even though it was for someone very beloved. No way would I do it for anyone if I was uncertain. There are very few people I would consider it for and I’m very close to my extended family.

(as in if she went back in the past knowing what it was really like - obviously she can’t donate another kidney 😅)

We were in an almost identical situation a couple of years ago. DNiece (on DH side) was diagnosed with stage 4 kidney failure out of the blue at 17. The difference was that DSIL (her mum) didn't apply any pressure. She completely understood when my 2 DD (aged 25 & 23 at the time) said they didn't want to donate & I also understood and supported their decision.

DSIL, DNephew DH, DH brother & I were all tested (with me being an obvious long shot) & after DSIL was rejected due to her own kidney "abnormalities" (slight but enough to make her ineligible), it was between DH & his brother. In the end DBIL donated. DBIL and DNiece are both doing well. (sadly the kidney transplant happened at the same time as my FIL died in a hospital which was miles away which was v difficult for the whole family).

I would not hesitate to make the same offer again, but that is me, in my circumstances. Everyone is different & no-one should be put under pressure to do something so potentially life-changing.

This morning I spoke to a nurse at the living donor centre. We discussed the circumstances in far greater detail than I have disclosed in my original post.

I don’t feel justified or vindicated, in fact, I feel worse. I know I’m not a suitable donor and speaking to a professional has helped me to understand how to navigate the coming weeks/months.

I’m still entirely in the dark regarding the circumstances that led to the request from my sibling. I know that their child will be getting the best possible care whatever.

This afternoon I found out that my parents contacted my two eldest and offered them money (A LOT) if one or other of them is the donor. I am so angry but also unsurprised.

Neither child has responded.
My youngest is aware of my sibling’s request and that I have declined.

You may have realised that there is a hideous backstory here but I wanted to hear some unsullied views.

I’m sure there will be more enquiries from my parents in the coming days but I can truthfully tell them that the coordinator indicated that I am not a suitable kidney donor for my sibling’s child 😢

@newyorksnow jesus Christ - massive hugs. Your parents are a piece of work aren’t they! I get that they are worried but that’s a step too far and I can’t see the coordinators being impressed with a ‘yes I’m here because granny said she’s pay for my organ’. Hope the children are ok after that emotional blackmail.

Oh my goodness, I would be FURIOUS with them for doing that. HOW DARE THEY!!!!

That is completely out of order. I'd seriously cut ties with the lot of them after that. I'd probably even call back the transplant place and tell them what they've done, and to ask them to tell your family to back the hell off on your behalf.

I can appreciate their dilemma, but this is not on you or your children to resolve.

I totally get your feelings around not wanting to donate. That's your choice. But your kids if they're over 18 should have a choice of their own. You should inform them and let them know your choice and how they can refuse without reprisal themselves if they wish too. However from experience I know a family who asked their brother and his kids to test. Brother wasn't a match and he refused to tell his kids. The child who needed a transplant later died. Despite being estranged like you almost 10 years later one.of his kids found out she could have had that slight chance of helping her cousin and hadn't been told. It's caused a huge family rift. Child now doesn't talk to parent a.d ironically ahs turned to the family if the kid who died for support. She too was 18 at the time her dad refused to tell her. So really it wasn't her dad's decision to make. Make your own choices yes, but don't make choices for others.

Holy fuck! I would be contacting the living donor centre and telling them about this so there is no way they would accept either of your children as donors - just on the off chance either child felt guilted into offering. And then I would be reading your parents the riot act, right before going NC with them. I am so sorry you have been put in this position.

Speak for the transplant team. Making it clear you are not an option means they won't waste time waiting to hear from you when the family are telling them you will be coming forward for testing

I'm so sorry that you're going through this @newyorksnow

I think your parents just demonstrated pretty clearly why it's illegal to pay people for organs. The idea of young people being pressured like that by family is horrendous. Thank goodness they have you there to stand up for them.

Good luck with the next few weeks/months.

That is horrendous of them and @newyorksnow the actions of your parents should have pretty much excluded your children as potential donors if that financial incentive comes to the attention of the transplant service. It's illegal to buy organs and the addition of financial and emotional pressure means they cannot give independent consent free from influence.

You and your children should tell the transplant service.

o come on, lets have a little bit of compassion here- which of us wouldn't be prepared to sell everything we had to pay someone to save our child or grandchild

I would definitely donate for my children and possibly for my nephew but I would have to think for a long time about it. I can understand your sibling asking though because if it was my poorly child I would be terrified.

Wow, they have really crossed the line there.
I agree with the posters saying you should update the transplant service with this new information. I am pretty sure what is being offered is illegal anyway.

I’m not close to my sister either. She’s always talked down to me (not any more though) it’s hard to explain really. We had an awful upbringing with a mental alcoholic mother, there was no food about for example. When I was say 11/12/13 and she’d of been 14/15/16, it never once occurred to her to bring me a load of bread or give me a pound. She’d rather bully me, treat me like shit and make everything 10 times worse. When I was 10 and she was 13 my mums boyfriend tried it on with her, she kept it to herself even though he was in the bath with me every night…
She’s got no time for me or my kids, insinuates that they’re annoying spoilt brats when hers actually are, the way they carry on at times is shocking. We’re barely in touch she just messages every few weeks.
Anyway I sometimes think about things like this when I’m miles away, she’d have no hesitation asking for the earth when she wouldn’t give me a crust of bread, and the thing is, she certainly wouldn’t even consider it for any of my lot.

Not in the UK, you can't. Buying organs is illegal.

Fucking yikes. Yeah, I would be on the warpath over that one. ‘Desperation’ is not a handy get out clause for that one.

Oof.

I did think your DC might be contacted directly, unfortunately.