Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Living donor dilemma

445 replies

newyorksnow · 20/06/2024 15:09

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.

OP posts:
Runsyd · 21/06/2024 18:59

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.

newyorksnow · 21/06/2024 18:57

InterIgnis · 21/06/2024 14:42

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.

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.

OP posts:
LobsterWeb · 21/06/2024 18:55

boombang · 21/06/2024 18:44

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

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

Children can have different blood groups to their parent.

DonnaBanana · 21/06/2024 18:55

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.

boombang · 21/06/2024 18:44

StepUpSlowly · 21/06/2024 15:26

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.

Edited

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

Willmafrockfit · 21/06/2024 18:44

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

PorridgeEater · 21/06/2024 18:39

Nookable · 20/06/2024 15:15

My understanding is thaf if you tell the doctor you don't want to donate they will tell your sibling that you're not a suitable match without telling them you refused.

Might be your best option to avoid family drama.

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.

RedYellowPinkGreenPurpleOrangeBlue · 21/06/2024 18:25

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.

godmum56 · 21/06/2024 18:04

violetposie · 21/06/2024 17:53

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

independentfriend · 21/06/2024 18:02

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.

violetposie · 21/06/2024 17:53

@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.

PoopingAllTheWay · 21/06/2024 17:36

violetposie · 21/06/2024 14:26

@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!

No one has offered me a kidney yet 😫😝😂

StepUpSlowly · 21/06/2024 15:26

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.

countcalculia · 21/06/2024 14:55

violetposie · 21/06/2024 14:26

@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!

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.

pearlsundersea · 21/06/2024 14:49

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.

InterIgnis · 21/06/2024 14:42

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.

mrsdineen2 · 21/06/2024 14:34

violetposie · 21/06/2024 14:26

@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.

violetposie · 21/06/2024 14:26

@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!

mrsdineen2 · 21/06/2024 14:08

violetposie · 21/06/2024 09:54

There have been a collection of obtuse and goady comments on here suggesting that anyone that would donate a kidney to a family member should also donate altruistically. Well, I'm assuming they're deliberately obtuse and people aren't actually failing to see the difference between the two situations.

FWIW I have offered a kidney to a family member (much to the horror of my parents as I was in my early 20s) however he refused to entertain it. I am also a blood donor, and registered with Anthony Dolan to donate bone marrow and platelets should the need ever arise if I'm matched. I have considered altruistic living donation but decided against it.

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.

Mycatsmudge · 21/06/2024 13:49

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

RollaCola84 · 21/06/2024 13:29

newyorksnow · 21/06/2024 08:58

I understand why some posters have labelled me heartless (kidneyless?) because yes I think I am being hard-hearted here.

I am fully supportive of deceased donation, bone marrow donation, blood donations etc. I have no religious or moral grounds to make an umbrella refusal here but I know I won’t help.

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.
I could go through the motions & be initially tested and tell them my decision then.
I could tell the transplant coordinator that I’m not a suitable donor.
All of these routes will result in the same decision being made.

I am thankful that it’s not me in the position of having to ask family members to make such a huge decision.

I haven't offered anything on how you should handle saying no, because there's plenty of people on here who have experience of the process and have given what I hope is sound advice that the transplant service can say you're not a match without giving the reasons why. I've stuck to what I do have a view about which is donation generally, and unacceptable emotional blackmail.

If you were hard hearted you wouldn't be agonising this much over how to handle it.

RollaCola84 · 21/06/2024 13:25

fungipie · 20/06/2024 20:52

Nasty undertones? Have you ever been a desperate parent with a child needing a life-saving organ?

But yes, I shall be straight here. Would you accept a donor organ if you ever need one. What about blood, or bone marrow? I strongly believe that all other things being equal (close match, age, pontential recovery, etc) donors should have priority.

Blood and bone marrow are replenished by the body so not an equal comparison. For what it's worth, I'm on the bone marrow register and have donated more than 50 units of blood.

Organs, I would accept an organ from a deceased person and my own wishes for anything of me that's useful after death to be donated have been made very clear. I wouldn't ask for or accept living donation from anyone other than my parents, who are the only people I would donate to.

There are plenty of thoughtful replies on here about the difference between living donation and donation after death, and who you would do the former for.

countcalculia · 21/06/2024 12:10

Fair enough @ANiceBigCupOfTea , your SIL sounds lovely.

ANiceBigCupOfTea · 21/06/2024 12:06

countcalculia · 21/06/2024 11:48

Why did she do it or an in law? Did they pressure her or guilt trip her?

No she's just extremely kind and brave. The in law would have died without it - sister in law so among the same age as her.
She knew what she was doing and was happy to do it.

countcalculia · 21/06/2024 12:05

OptimismvsRealism · 21/06/2024 12:04

Can you really not imagine having the urge to help your husband's family? That's sad. Even if you wouldn't do it in the end plenty of people do.

Er. that's why I'm asking why she did it...