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.

What’s the point of testing if you’ve already decided you will not be donating and plan to back out anyway?

And she is entitled not to want to donate especially given the relationship she has with her sibling.

Exactly. It would just be wasting the time and resources of the transplant team. The only reason people might want someone to "take the first steps" would be because they hoped that if that person proved to be a suitable match they would feel obliged to go through with the transplant.

I am not allowing my parents to do anything.

Your parents are responsible for their own actions, that isn’t on you.

I’m guessing your sister is very much like your parents? Just a guess, but I’m getting that impression. Personally I would be blowing up hard at the lot of them, but that’s my personality type, yours may be different and you’d just prefer to keep the lot of them at arms length and stay out of it as much as you can.

I don’t know if they’ve instilled in you a fear of conflict with them, but if that’s the case I would examine that. Why should you be mindful of their feelings when they have no regard for yours or your family’s? They have no power over you that you don’t give them, just the illusion of it.

Tbh I would talk to the transplant coordinator about their offering bribes. It’s better it’s tackled at this stage than it come out later.

Similar situation re family dynamics. When family are vile they also make the choice of not being able to ask for help. I tried so much over the years to resolve the issues with my siblings. Often joking ...what if any of us need a kidney?. Never resolved. Mum died earlier this year and that's the end of it. Currently ill and have realised how fabulous and kind my friends have been supporting me through it. They are my family. My blood family have no call on me including my kidneys. Choices and behaviour have consequences. Say no. X

Your parents (and presumably your sister) are utterly awful. That bribe to your DC would surely be evidence of coercion which should automatically rule out any further steps towards donation.

Some of the emotional blackmail on this thread is also disturbing.

And makes me even more adamant that we should absolutely oppose assisted dying and baby surrogacy.

And, yes, buying organs is illegal in this country. We are at least that civilised.

@newyorksnow i suspect that there are a few bad actors on this thread. You are not hard- hearted. I’m not an advocate of cutting people off, but your parents don’t deserve your compassion.

There’s obviously a long back story and I’m sorry for what I imagine is a lifetime of these sorts of dynamics. I hope you can find peace with your thoroughly moral decision.

As your DC are adults they should be free to make up their own minds.

I would want to help if I was a match as this is life saving or life changing at the very least, but you are not me, but don’t block DC from doing so.

Would you do it to save their life? Or to stop them having to spend several days a week in hospital having invasive treatment (edited to say every week for the rest of their life)? If not, be honest and say no as soon as possible.

Think you've missed OPs update. Grandparents have contacted OPs DC directly and offered to buy their kidneys.

The DGP shouldn’t have brought money into it, clearly they are desperate (not an excuse) but not relevant to what I said.

The DC are adults and should be free to make up their own minds, free from influence of OP. No point addressing the DGP as they are not posting.

It's very relevant to what you said, because the issue of the DC making up their own minds only applied when OP was in control of whether they knew or not. She isn't now. They already do, and so that part is settled. They're now the ones deciding. You evidently didn't read the update, as I said.

Really? You wouldn’t want to give your 18-year-old, or even offspring a couple of years older, your opinion on something as serious and potentially life-changing for them as that? How odd.

They don't usually let women of childbearing age donate. Which may be why you weren't considered.

This puts out you and any female children. You haven't indicated your DCs assigned genders but I would say that they are far too young to make a life-altering decision like that for themselves anyway. Especially if there's been an attempt at bribery! I'd use your medical history or similar and say that you've been told it's not worth them submitting to testing. Allude to them not not being suitable for consideration. Mention you contacted them and were told for medical reasons you were not suitable. Just allude that "you" means all of you, not just you in the singular!

Which part of undue pressure and the offer of money do you think is ok?

The adult childrens' thoughts become secondary to the offer of money because the transplant coordinators can no longer be sure that they are making up their own minds.

If the OP knows money has been offered then really she should be reporting it as it is a) a legal matter b) she's otherwise potentially complicit in unethical practice.

Did you mean to quote me there? Looks like it may have been aimed at the poster I replied to.

I'm not sure if this is the case. When I was looking on the nhs site they said apart from a slight higher risk of high blood pressure and preeclampsia in pregnancy it's ok to donate a kidney.

Yes I damn well did.

The adult children are now no longer able to make a free decision to donate.

It is irrelevant what they may respond.

The fact money have been brought into the equation means that the transplant coordinator can not authorise the adult children being donors because they can not rule out undue pressure.

Right.

It was a very odd choice of post to tack yours onto then, given my contributions throughout the thread. There was nothing whatsoever in my post about offers of money being ok, so that was invention on your part.

The poster I replied to was focusing on the not telling the DC part, and clearly hadn't seen that the DC now know anyway. Which is what I was talking about. The time to argue over whether OP ought to make the decision for them has been and gone.

The OP should tell the coordinator because it's potentially unlawful behaviour that puts her children's lives at risk.

So no I don't think it's out of the OPs control or remit.

The adult children are now in a position where donation should not even be considered by ethical coordinators.

She should indeed. Meanwhile, the DC still know about the situation, the cat is very much out of the bag and you would do better to aim your posts about paying for organs at the person who minimised it.

Actually my response was because I've just had a close friend need a kidney. I think they avoid it if they can. Her Mum and Sisters were rejected on this basis. I guess if it's the only match they might. Luckily my friend had male relations who matched.

@pollymere ah interesting. Makes sense for op to say that then, but I feel her relatives wouldn't accept it even though they can't force anyone.

I just don't think anyone should be labelled heartless for not wishing to give up a body part.

You've got two arms. Why do you need a second. Limb transplants are possible. Why don't you give up your second one? You heartless bitch.

You are spot on.