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.

Your DH is correct. A living donation is not without its risks and you have to think about your own future health and your children.

easy to say when it's not your kidney.

It's a horrible decision to have to make, and the OP is trying to be honest about the process, avoid drama and not mess people around at any stage. You cannot ask for more.

Even if she was best friend with her sibling, it's a lot to ask.

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

It's entirely your choice OP. It is a massive undertaking and I would also say no.

Just send a text back

"Hi sibling, we have explored the routes to take and looked at the testing criteria. We do not meet any of the criteria for a live donation so unfortunately we cannot help. Hopefully you have had better luck with other family members?

All the best, OP"

It's not a lie - you don't meet the criteria because you're being pressured, your children are recovering from broken bones / have CP.

Pp are right you can contact the team and they can say you are not a suitable match, .

“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”

It seems very obvious that she’s looking for advice on how to refuse the request without creating huge family drama.

She has been clear that she’s not going to approach her children about it, and that she doesn’t want to help.

I think your children need to decide for themselves.

She has backed out. At the earliest point.

Are you registered as a living donor and willing to donate for anyone? Because if not you’re a hypocrite.

I would absolutely not ask this of my kids.

I don't know if I'd do this for my nieces. You only get two kidneys, what if your own children need them. Anything else I would live donate because you make more of it, but I don't think I'd give a kidney away.

I think it's worse to take those first steps when you are sure that you won't be taking further ones - and as OP states, it ties up NHS resources testing someone who is not intending to donate.

I suppose I’m already imagining the “I can’t believe NONE of you are a suitable match” type of comments.

I am intending to contact the transplant service (coordinator?) to say that I’m an unsuitable donor. I’m assuming that I won’t have share any of my personal medical history. I am an unsuitable donor as I cannot say that I would donate voluntarily & without pressure. Surely I would have to sign
consent to this end and I cannot truthfully say that.

WRT my children; they are all 18+ so it’s legally their decision to make. I could just not ask them at all. My sibling sent the WhatsApp to me as they don’t have any contact.

Like I said I don’t know the urgency of the transplant, whatever, it’s a position that no parent wants to be in, having to ask for help to save the life of your child.

What about if it was a nephew on your husband’s side with a parent you really disliked.

This message is very useful info. A young teen will presumably be very high on the list for a transplant from a deceased donor. Living donor transplants only make up 30% of all transplants so most people go on the usual waiting list.

And for all those saying they would help their niece even if you had no relationship with her... well you can also ways look into donating a kidney to a complete stranger. It's not that different.

OP I used to work in organ donation, not live donor but I had lots of interactions with the live donor team. You can phone and tell them you do not want to donate but are being pressured to be screened and they will help you. They will not judge you and you do not have to explain yourself. They are usually very astute and careful to make sure living donors re volunteering entirely of their own free will.

No one should donate organs if they do not want to. All the people here who can't imagine not being willing to help may think differently if they understood what the process involved. Having a kidney removed is serious surgery and serious surgery carries risks. How many people would risk their life and potentially deprive their own children of a parent to help someone else?

Totally agree.

I think you have the right to refuse for any reason, but if your children are over 18 and of sound mind then I think it's their decision to make. Both of mine are over 18 and I wouldn't show them the disrespect of keeping this from them and denying them the opportunity to make their own choices, much as I might want to.

Just wanted to take this opp to say that if more people donate after death there will be less pressure on living family members. Please consider it, everyone!

This. And why wouldn't you let your children have the chance to decide if they want to help or not?

I've name changed so that this is not connected to other posts.

I have been in your SIL's shoes and she is being VERY unreasonable. I would never have demanded extended family were tested as potential live donors.

The first reply nailed it actually. The transplant co-ordinators can just say you and the rest of your family are not a match.

I would speak to the transplant team. For two reasons.

My daughters were approached as a family member needed a kidney. As soon as we spoke to the transplant team they were ruled out because of their own risk factors and their young ages. So in your shoes it’s worth finding out if this is something that could impact your children.

Secondly speaking to them and saying no makes everything clear and simple all round. You’ve spoken with the transplant team, you’re not suitable. End of. No wonderings if what if on their side and no pressure being placed on you.

It may also lessen the chance of your sibling, or one of your parents, approaching your children directly .

If your children are adults though it should be their choice if they want to be tested or not.