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.

Sorry haven’t RTFT but have your sibling and the dcs dad volunteered for the domino scheme ? That would much more sense to be as the people in it want to donate a kidney

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

It’s a young person’s life on dialysis vs the relative freedom of transplant at stake here. So many kind people who find the OP’s hesitation ‘heartless’ or who wouldn’t speak to their parents again if they were denied the chance to help their hypothetical cousin…….its touching to know all of these people will be lining up to donate! What wonderful news!

@newyorksnow 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?

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

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.

Do you understand just how high the risks are to the donor?

It’s not a decision anyone should ever be guilt tripped into. Theres a very real risk to their own life.

I’m sorry to hear this, I hope you are able to find a suitable donor when needed.
I know you are being facetious here, you understand.
It’s a huge deal.

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.

Yes but op has no relationship with this side of the family. They haven't even asked directly, it's on a group WhatsApp message ffs. Op also has children herself and like many other posters may want to keep both kidneys in case she ever needed to donate to her own children.

yup and most if not all of the Oh I'd do it, you should do it why would you not do it comments are from people who have ZERO experience of the situation or of any similar situation.

I'm also unsure why they are being so pushy towards op if it's a large group. Siblings, parents, grandparents can be screened. the way op's sister has basically summoned everyone to get screened isn't on.

You don't need to be a match to donate a kidney. I don't have the full scientific details, I have a friend who recently donated his kidney to his girlfriend (they are from different parts of the world). She was worried about reaching out to her family members initially..

You should let the person leading this exercise know they can potentially donate theirs if they want to.

Rather than argue about what a high or low chance is, it's a 1/3000 chance of death and a 1-5% chance of ESRD.

My cousin donated her kidney ten years ago now for one of her in laws.
It's major surgery. She was in significant pain afterwards, not to mention the risk she is now in if something happens to her remaining kidney.
I totally get you not wanting your children to do it. It's unfair of your family to pressurise anyone. As I said its major surgery and you absolutely have to want to do it of your own free will.

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

might have been a domino donation where there are a chain of donors. its a bit more complicated than match no match and some matching is necessary. https://health.ucdavis.edu/transplant/livingkidneydonation/matching-and-compatibility.html#:~:text=Kidneys%20are%20very%20successfully%20transplanted,or%20even%20a%20viral%20illness.

All men at 40 have a c. 3% chance of esrd

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...

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.

Fair enough @ANiceBigCupOfTea , your SIL sounds lovely.

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.

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.