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 does CP mean?

Also is this not hugely outing ........

ETA - you're not horrible, they're your kidneys to do as you wish with!😅

Would you donate a kidney to a stranger ? I'm a regular blood donor and have been for years, my wishes for organ donation after death are very expliclty stated and I'm also on the bone marrow donor register. But I'm not altruistic enough to do living donation of something non replaceable to stranger and to me my extended family are barely different to strangers. No family falling out or traumatic back story, we're just not close. I saw a couple of my cousins five years ago at a funeral, can't remember when I saw most of the others. Ditto aunts and uncles.

I think not wanting to put yourself through surgery and the potential long term consequences of only having one kidney is a perfect reasonable and understandable mindset.

The risk of death from live kidney donation is very, very low

Again, this doesn't mean op should do it (you should only do it if you absolutely want to) but please don't spread misinformation about a lifesaver

Given the circumstances you have stated OP I would NOT tell my children as I would have no faith at all that the sibling and probably my parents, would not apply all the emotional pressure they possibly could.

I went through screening to be an altruistic donor, sadly I've got structural issues with my kidney biology that meant I'm not suitable to donate.

Just in respect of you not even mentioning this to your children - I would be upset if it turned out even distant/estranged relatives needed a kidney, later died, and maybe I could have helped but didn't even know about it because a parent decided not to tell me.

You presumably have your own reasons for not wanting to do this based on a complicated family context. But just as a food for thought question - if one of your children needed a kidney transplant, would you try approaching these relatives and ask them to test? If not, and you/their siblings tested and weren't a match, would you say okay it's not meant to be then? Or accept an altruistic donor - so accepting an organ from a complete stranger rather than asking these relatives to potentially do it?

There is nothing horrible about not wanting to donate. It's totally normal to say no. Most of my family have said no.

I was able to donate partly because I was in a good work position (freelancing, so able to take time off), I was healthy, I had finished having children, and I very dearly loved the person who needed the kidney.

I'm also in the US and was able to take part in a program where if I ever need a donor kidney, I am now top of the list to receive one. That really helped my decision.

Good luck - your family sound complicated, and it's not easy navigating this stuff.

I disagree.

I don't think anyone should feel they have to donate, but I do think everyone should make their own choice and the OP has been asked to ask them. I would be furious to not be enabled to make my own choice.

But wouldn’t it then be much harder to say no if you do turn out to be a compatible match and that you could save the teenagers life? That’d definitely ignite the family bad feeling…

I think if you’re adamant you’re not willing to donate you shouldn’t test. But your children are over 18, adults, you should at least let them make their own choice, even if thats a hard no.
I would donate for my own kids in a heart beat, anyone else, probably not.

You are not a horrible person. Don’t guilt yourself over it. It doesn’t sounds like you have a close relationship with your niece/nephew so just treat it as if a random stranger asked you to donated to their teenager. You can ask the donation team to say you are unsuitable. That should cut the family dramatics down and protect your children.

One of the criteria for donation is the full willingness to donate. It’s not just about having the right blood type and other markers.

you should not make this decision for your adult children. It should be up to them if they want to be tested.

my family is whole because of a living donor. I am thankful for every day we have.

Your heartless to say that. The niece does not sound like a massive part of the OP's life. The surgery carries risks .

No point in going for testing - just a 'no, we are not suitable donors, is the answer you can give.

Thank you for sharing your experience. I don’t know the specifics of the child’s need but yes I understand that younger recipients will need multiple kidneys in their lifetime to stay healthy. It’s going to be an awful time for my sibling & their child and I wouldn’t wish this on anyone. I just don’t want to be considered for donation and I admire anyone who can do this for a loved one.

Organ donation is a huge deal. It is a much bigger surgery for the donor than for the recipient and comes with risks. This is usually done for someone close to you, and the OP is not close to these people and either are her children. I wouldn’t even ask my grown children to get tested, and I’d be very very reticent about doing it myself for anyone who isn’t my own child.

Whilst the risk of death is low my understanding that living with only one kidney is difficult. And like posters have said up thread what if your DC need it in the future? What happens about your quality of life and your relationships if you do it?

It's a huge and life changing ask and you don't have a relationship with your DN.

I think you need to just say no and stick to it.

I'd just be worried they might be contacted through social media. OP has said she thinks Dsis response would be along the lines of 'can't believe none of you are a match' ie that she's not likely to uncritically accept it.

Basically, the issue is that OP and her DH can't actually decide whether her adult DC find out about this or not. They can only decide whether the DC find out from them.

On the flip side I wouldn’t have a problem with my mother not talking to me about it, were I the adult child in this scenario. Actually I’d appreciate her keeping me out of it.

Just tell them you're not a suitable donor. Because you're not. A donor has to give their organ freely, without being pressured into it. By definition you are not in that position, therefore you're not a suitable donor.

It can be hard to feel that you're being fair about people who treat you like dirt until they want something out of you. That might be compounding OP's dilemma of how to handle her sister and parents.

In OP's shoes I think I'd ask the donation team to pass on word that I am not a suitable donor. I would however tell my DC about the situation but make it very clear that I am placing no pressure on them at all.

Family dynamics can be horrible to navigate at the best of time.

@Otherstories2002 it's not hypocritical to not donte to a stranger. I'm talking about a family member. And I didn't say I would donate. I would want to start the process and find out all the details, if I was compatible, long term effects, risks of the surgery all those kind of things I have no idea about. And then I could make an informed decision.

I don't think it's wasting time/resources to find out all the information and then make an informed decision.

No, it's not difficult to live with one kidney, especially for living donors who have been extensively tested before surgery. You should avoid NSAIDs and omeprazole, but that's all.

Statistically, living kidney donors actually have a longer life span than average.

Your life is totally normal with one kidney. It grows to take over the work of the other and stats show donors actually have a slightly longer life expectancy than the general population.

My mother in law was in need of a donor kidney, her younger brother offered but my mil declined as he had young children of his own to think about.
It's been just under 15 years since she received a donor kidney after being on dialysis for a year.
She still maintains that she couldn't have accepted a kidney from any of her younger siblings, she would have felt terrible if down the line anything had happened to make their lives more difficult.

You would agree to sacrificing your future heath and wellbeing and potentially cause yourself long term vulnerable kidney and urinary issues, to help someone you have no relationship with?

I'd gladly give blood/plasma. I would not give an entire organ to someone other than my husband or own children.