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.

I'd only give my organs to my DH or DS. I wouldn't risk my life for anyone else and I wouldn't expect anyone else to risk their life for me either.

OP has explained very clearly why they feel it's inappropriate and why they must protect themselves. Even without those very good reasons, giving a kidney is a HUGE thing to do.

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.

We are talking about a 14 year old here- with a whole life ahead- potentially.

Didn't say it was. I'm a Dr, I put in dialysis lines for a living and working 5y on icu dialysing people.... I'm well aware it a diabolically crap existence, was purely correcting that they wouldn't have been immediately dead had they donated

That does not oblige OP, or indeed anyone, to donate organs.

@fungipie still no.

OP didn’t say she was opposed to organ donation, or that she wouldn’t donate herself. She said she won’t donate to her DN.

A colleague of mine was interviewed for potential domino / 3 way swap ie she might donate a kidney to X in exchange for someone else donating to her mum

She was impressed that there was no pressure at all. They assured her that if she didn't want to go ahead, for any reason, then they could always find a reason, so she could tell her Mum that she offered but wasn't suitable

They dont remove the kidneys when they stop working, Not even if you get a transplant

The domino situation sounds great for people who want to donate but aren't a match. Their loved one still gets a kidney.

If the op uses the excuse of not being a match then the sibling could pressure her to sign up for a potential domino situation so the op needs to make it clear she doesn't meet the criteria full stop.

They do sometimes remove damaged kidneys that no longer work. They won't remove one that still has adequate blood flow to it though.

I know nothing other than a donor kidney is needed

Which reminds me to say that, while I understand their desperation, this is a hell of a thing to ask from someone to whom you're not even close

As for asking via whatsapp ... it's a minor point in the bigger picture I guess, but TBH that doesn't sound very appropriate to me either. This isn't about a vague get together but a huge, life altering decision, and the fact they seem unable or unwilling to approach you personally wouldn't bode well even if you'd been keen to do it

What's the domino scheme that people are talking about? I haven't heard of it, and I have a relative in the UK awaiting a kidney.

If you aren't a match for a family member but are a match for someone else's family member you can donate to someone else, their family member donates to someone else and it all goes round in a circle until your family member gets a kidney.
eg. Person A needs a kidney. Person A's sister wants to donate but isn't a match so donates to Person B who needs a kidney. Person B's family member isn't a match for Person B but is a match for an unrelated Person C so Person C gets Person B's family member's kidney. Person C's family member isn't a match for Person C but is for Person A so Person C's family member donates their kidney to Person A, thus closing the circle, all three people get kidneys and all three people are able to donate, albeit not directly to their family member.

It's organized through the transplant service somehow.

Ah I know how the scheme works - that's how I donated here in the US. I just haven't heard of it happening in the UK via the NHS, and my relatives who are in the UK haven't mentioned it.

If you are not a match, your children wouldn't be, would they.

But if they are, whether or not to donate is their choice. Nothing to do with you.

I would never have forgiven my parents if they had denied me the chance to save my cousin's life. I would never have spoken to them again

Sometimes we do. Non functioning kidneys are prone to infections or ruptured kidneys from trauma are often removed....

Does happen here not uncommonly. There's no legal enforcement though I know of someone in a chain where an individual got their kidney then their relative pulled out the chain so others lost out bit nothing they can do

I would, and I've given my family clear instructions that if I die, I want to be a donor. It doesn't mean that I'd support taking an organ out of a very much alive OP.

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

Thanks. I'd heard of the quarterly matching runs, but that sounds really stressful - waiting for a match, then hoping everyone's surgery goes ahead. Mind you, the whole experience is nerve-wracking even when everything is relatively uncomplicated.

Sure they could be - parents can have a different blood group to their children.

If the parent is A and the child is O then the child can donate to more people than the parent, for example. O can donate to any blood group IIRC, whereas A can only donate to A or AB.

I'd just say I'm not able to donate due to xyz health issue. (You can easily Google ones that are quite minor but would discount you)
It's a mad imposition to demand that people unquestioningly offer their kidney to someone. It's a really serious operation and no way should you be coralled or dictated to about doing it.

Try harder. Your lack of empathy is being concealed by hypothetical kindness you’ll never need to follow through on.

These decisions are difficult even in situations where the donor and recipient are very close. The risk of death to the donor and the reality that they cannot donate to, say, their own child later down the track are just two of the considerations.