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.

Firstly what your parents have asked your children - is bordering on illegal which you may already know. It may be worth letting your children know that, though my impression is that they seem fairly sensible.

I think in my experience working where do lots of renal - the acuity generally isn’t the same in the way it is for a liver (the other live related one) or something urgently life saving like a heart transplant. People can go on dialysis and though it’s better to get one sooner rather than later renal replacement therapy and care is often good particularly where people’s compliance is good.

Personally working around transplant for a few years has given me some pretty strong views - I’d give a kidney to my mum and not my dad. I love them both. But my mum
would look after it and my dad wouldn’t! He’d not control his diabetes and waste my kidney and I’d resent it!

A nephrectomy is a pretty big deal, YANBU, with the strained relationship you have - it’s not a fair ask when there are other family members, the deceased donor list and dialysis is life sustaining treatment even if transplant is preferred.

I hope your family learn to wind their necks in and leave you alone and a better solution can be found for your niece or nephew.

I am just shocked by the offer of money from your parents. It's just awful. It's grubby and manipulative.

I think in honesty you should let the coordinator know. Because if your kids don't donate someone else may Because of the money. And that's just not right

Simple - dont engage

I think you should tell the donor organisation OP, I know this is a reach but what would there be to stop them offering the same deal to others in your famiky?

That's a distinct possibility. And one which could potentially make an otherwise eligible donor ineligible. If the OP flags it up to the transplant service then the service may be able to explain that to her parents and prevent that from happening.

You don't sound hard-hearted at all. Your family are doing this all wrong.

I think you really should tell the transplant service about the offers of money, not least for the sake of your sibling's child. They're hoping for a potentially life-saving transplant that a disclosure of financial incentives could see halted.

It's illegal to buy or sell organs, so a transplant service can't be party to that. It also means a donor's consent is not being freely given due to the influence of the financial pressure.

If an eligible donor is found but has been offered money, the transplant service would still need to follow rules about consent and organ buying/selling, so there would be a good chance the transplant wouldn't be possible. That could be disastrous for your sibling's child. Your intervention now could enable the transplant service to prevent that outcome.

That is how I’m dealing with this. The original WhatsApp came out of the blue to a group of us cousins, aunties & uncles. I didn’t respond, but most on the group did so immediately & there was a flurry of back & forth.
When I didn’t respond I received “reminder” messages from my parents & sibling several times in the few days I spent agonising over it.
A link was sent to me to contact the transplant coordinator and that is all I have done.

My parents are unaware that I know they offered my older children a financial incentive.
Both children are quite sad at the assumption that money would sway their decision.

This. Your parents are outrageous. Putting pressure like that on young people is utterly despicable. Unforgiveable.

I am sorry your parents have behaved this way. That is quite shocking. I would absolutely report that this has happened to the transplant coordinator as plenty of people could be swayed into making such a decision if they needed money when they actually would not donate otherwise. It is illegal and unethical. The team need to know.

Ps I think now is the time to go nc with the whole lot of them.

I second every word of that. Like you, I had terrible parents, but this is truly shocking. I would cut off contact completely, in OP's shoes. I could never forgive it.

Quite simply I would be informing the donation coordinator that my children had been offered money.

It automatically means they are not free to consent because it demonstrates undue pressure.

Even if they said yes, at that point the hospital would be breaking ethics to go through with it.

Totally your decision, being a living diner is a HUGE decision to make and you need to be fully committed.

im sorry that you have such awful parents, I’d be furious too. However I would be contacting them to tell them to never message my children about this ever again!

Agree with pp’s… you absolutely should tell the transplant coordinator about your parents offering money to your children. Followed by complete NC. How dare they!!!

Transplant teams understand if it is too difficult. As others have said contact the, as they will not let you donate if you don’t want to. In some circumstances the feedback from the team has been known to be vague e.g. was not suitable for donation, when the suitability was down to not wishing to donate.
The transplant team are there as much to support donors as they are recipients so please don’t worry about contacting them.

Sorry haven’t seen the post about offering money. That is appalling, and may be legally dodgy.
Please talk to the transplant team.

Yes, some pp were saying don't waste the transplant team's time. In telling them the situation, you are not wasting their time, you are expediting the move to check off other candidates and/or options.

There is a system in place where your sister can donate a kidney herself, not for her daughter obviously if she's not a match but to someone else. This will then bump her daughter up on the list to receive one from people from other families doing the same thing. They did this in the hospital I worked for. It's totally your choice and she shouldn't be hounding you. She needs to put her money where her mouth is and donate one herself first.

My dm was a nurse and all of your points are the same ones she would make.
Also i know of a lady who donated to a family member. They had great recovery but died suddenly 2 yrs later (nit kidney related) but the lady was never right after her donation .

It's ILLEGAL to buy an organ. Period. End of sentence.

@newyorksnow Please let the organ donation officials know that your children are being bribed with payment to be a donor. It's wrong in every single way and I hope you get some help from the Living Donor Center.

How awful, I'm so sorry OP.

I'd have to tell the transplant coordinator about the bribe offer, to protect my kids by ensuring they're blocked from donating in this case. Mine are also in the 18-20 bracket and while in theory I'd love to say I support and trust their decisions about their own bodies etc etc.... nope, I just couldn't take the risk. Who knows how high that bribe will go, I'd want to make sure they're ruled out at the source so there's absolutely no chance of swaying their decision.

So you will allow your parents to try and monetarily coerce someone, like your children, to sell an organ. Nice. 🙄
You won't call them out on their manipulation and will, again, let them get away with it.
smdh

Your parents are VILE.

I just wanted to add another vote that you tell the donation team about your parent's offer. This will protect your kids.

Your sister absolutely can offer her own kidney and get her daughter bumped up the list. Or one of your parents. If I were in your position I'd probably make the suggestion to my parents regardless of the fallout. They would put your children at risk to save their own skin.

You are absolutely 100% ok to not offer your kidney to anyone - not even your husband or child if they needed it. It's your body. And as many have said, it's a huge deal and some people are never the same again.

Having a family member that has received a transplant, this would have been my first thought. Why on earth wouldn't someone donate, if they could?

A post on here changed my mind. Someone said what if they donated to a random because they were a match from a register, but in the future their child needed that kidney?

I'll be keeping my spare parts in case my actual family ever need them.

Once I'm gone, my organs are fairly game.

I understand completely. I would want to be able to donate but I wouldn't. I have care of a disabled child who needs me here. Donating involves all the risks of surgery and anesthesia, the risks of only having one kidney to rely on myself. That's not the kind of donation I would make outside my immediate family for the sake of my own children who need me to be alive and healthy for them.