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.

So OP had your DN’s mum and dad offered to donate one of their kidneys on the Domino scheme. If it was one of my dcs I would do that first before asking family members to donate a kidney

I haven't seen any of those.

What I have seen is the very valid suggestion that trolls who are facelessly and viciously attacking someone for not donating should themselves step up.

@mrsdineen2 I direct you to the following goady and deliberately obtuse comments:

@PoopingAllTheWay "Im going to be needing a kidney soon
Anyone want to donate to me?
You know, if its not to much of a big deal"

You "can you please confirm, have any of the pious slabbers in this thread PMd you to to offer their details to your sister?
Or can we completely disregard their bullshit?"

@MissTrip82 "All the big talkers are aware that they can donate a kidney for altruistic reasons if they wish, aren't they?"

Oooo you again! "Very admirable of you to volunteer. DM your phone number to OP her sister will be in touch."

There are more. You can't seriously think that just because someone would donate their kidney to a nephew, they would happily donate their kidney to someone they don't know. It's quite a leap!

All of those comments are directed at people attacking the OP, not just those who, like myself, would privately consider donation to family while respecting the OP.

It’s very easy to volunteer someone else’s organs, and say what you would do, when you’re not actually in that situation. Hence why posters are suggesting those doing so should volunteer themselves, if they are so concerned, rather than falling back on ‘well, I of course shouldn’t be considered for X reason’. Convenient, that.

Someone being family doesn’t mean that you even like them, let alone owe them organs. Even if you do like them, you don’t owe them organs. It really isn’t the difficult a concept to grasp.

I don't understand all the posters saying they would donate to their niece or nephew - these are estranged family members with a difficult history. Even the way the sister has gone about the request - presented as a blanket demand - for a body part shows she is not a reasonable or nice person.

i think those comments are spot on. What you and the 'be kind, donate' posters are ignoring is that OP's sister's dc may as well be people they don't know - OP says she is very low contact with them "None of them have any meaningful relationship with either my sibling or their children who are late primary age & young teen."

So if you think OP should be happy to donate to them then you should be just as happy to donate to someone you don't know.

YANBU to not want to donate if that’s how you feel (nobody should be pressured to donate an organ) but I would give your kids the opportunity to if they wish while stressing they absolutely don’t have to and can say no (and that you in fact will do the same) as they are adults and it should be your decision.

if I was your child (I am also a "young adult") I would want to get tested and donate if I can even if I have zero relationship with my cousin. In the end it’s a teenager we are talking about. I would want to do it. But I have also signed up to donate bone marrow since I am 20 and would likely donate to anyone in need as that’s my perspective on life. A friend also got burried today from cancer. In my opinion no young people should die. So if I could help someone I would. And I would be PISSED if my mother didn’t let me know about the situation just because she doesn‘t want to donate (which is fine) and also doesn’t want me to donate (which isn’t her decision to make.) Like, if I found out a cousin died when there was a small chance I could have done something I genuinely don’t think I would be able to forgive her.

As adults they should pick, their beliefs might be different from yours and it’s their right to decide and make choices based on their own moral compass/beliefs and emotions.

No one has offered me a kidney yet 😫😝😂

@countcalculia

"i think those comments are spot on. What you and the 'be kind, donate' posters are ignoring is that OP's sister's dc may as well be people they don't know - OP says she is very low contact with them "None of them have any meaningful relationship with either my sibling or their children who are late primary age & young teen."
*
So if you think OP should be happy to donate to them then you should be just as happy to donate to someone you don't know.*"

I'm not ignoring that point, I just simply don't agree that a sister (who may well have grown up in the same house) and who was seen every 6 months until the last 2 years equates to a completely anonymous individual.

I would be "just as happy" to be screened for donation to a family member that I haven't seen for 2 years' child. The family member I offered my kidney to was a great uncle who I saw only a handful of times in my life. At this point in my life I wouldn't consider donating altruistically. They are very different things.

But as I said initially, I don't think the OP is unreasonable to say no, she doesn't have to give up her kidneys to anyone if she doesn't want to. It's a completely understandable position to take. It wouldn't be mine though.

I think not discussing with your adult children is a mistake. I can see the search for donors being made public by your sibling and/ or their child in places where your children might happen on it without warning.

I really do not think you can know that until you are in the position yourself.

I don't blame you @newyorksnow I would never give a kidney to another living soul except my daughter. Not a sibling or niece or nephew, cousin or aunt or uncle, no-one. Wouldn't risk it. It's not just helping them. You're putting your own life at risk. Then again I only have a brother I am not close to and his 2 sons. Haven't even seen them for 6-7 years. Maybe you'd feel differently if you were super close.

This seems a good idea. If you don't want to do it then you are not a suitable donor.
Your 18+ children have every right to decide for themselves. As have you. It's an individual decision and no-one else can demand it of you.

it is a big deal and very wrong of your family to put pressure on, a family donor is not necessary

I agree, it is a terrible thing to do to your children, with hold from them the right to make the decision for themselves. I would never have spoken to my parents again if they had done that to me.

They won't match if you don't. They are less closely related to your sister than you are. But if you do all match, you can decide for yourself not to donate, but not for them

Say you’re not allowed to donate a kidney because you had abnormal readings on a recent medical check up and doctor says no. Then let everyone else make their own decisions.

About the matching... You've said this twice now, and it's still not true.

Children can have different blood groups to their parent.

The volunteering of someone else’s organs sums up the situation really. I’ll update in full below but the conversations I’ve had today have further justified my decision.

So by the sound of it your sister has made very little effort with you and clearly doesn't give much of a shit about your relationship. And now she is insisting you willingly donate a body part to her child. Fuck that. I'm guessing if the boot were on the other foot, she'd be running for the hills before giving up a kidney for your child.

I agree, it is a terrible thing to do to your children, with hold from them the right to make the decision for themselves. I would never have spoken to my parents again if they had done that to me.

I disagree. Young people can be very, very naive about the long term consequences of their decisions. I would heavily discourage one of my kids from donating an organ because I'd be so worried they might live to regret it - or even up dead because of it.

Regarding asking the children to donate...

Once you start going down the road of testing, it's easy to feel more and more like you ought to donate. It gets harder and harder to feel like it's OK to pull out, even if you're no longer sure you want to do it. You become hyper-aware of the fact that the recipient is pinning their hopes on you, and you don't want to let them down.

I donated to someone who put zero pressure on me to donate, and who would have been completely understanding if I had ended up unable or unwilling to do it, but I still felt in myself that once I'd started the process I ought to donate if I passed the testing process. And I'm a bolshy 54 year old who's pretty good at setting boundaries. I think it would be much harder for a young adult whose family is putting pressure on them, and who wants to feel like they aren't letting anyone down.

From a health perspective, a young person also has a much longer life ahead of them with one kidney. 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.

In a family like the OP's I can totally see why she wants to protect her children from all of that, given that some of her family sound pretty unreasonable and determined that someone will donate no matter what.

I could take the nuclear option and reply to say I’m unable to help but the fallout would be beyond anything you can imagine

But even if you went through it all and were found to be a perfect match, once the team identified your reluctance you'd end up telling them that anyway

Feel free to say if I've got this completely wrong, but it sounds as if they're demanding this or else will go ballistic, and that's just not the way this works

Edited to add I believe the transplant team can tell them for you, but would this really make any difference?

You have said that twice now and you are still wrong. you are not matched for a kidney according to blood group.

There is not likely to be any long term consequences from donating a kidney.