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.

My children and niece (possibly DP) are the only people I'd consider donating to. I wouldn't raise this with my children, and I wouldn't donate to a cousin.

Do you fear your parents will pressure you? I'd say either contact team and say no, or tell your siblings no directly.

have you been in those circumstances? Because if you haven't then shut up because you have no idea what its like.

She’s asking how best to refuse and navigate the family pressure.

She’s not asking whether she should donate (she’s made it clear, repeatedly, that she’s not going to), or asking people to apply emotional blackmail to get her to think about it/do it.

Would you do this even though it could potentially leave your own children without a mother? And even though it could mean that you won't be able to help if your children need a transplant in future?

You are absolutely not being unreasonable. It is a huge commitment to donate a kidney and though I understand your sister's feelings no-one has the right to make that demand of anyone else, least of all for a relative you’re not that close to.

Your own children may not "need" you as much as when they were little, but they still need you. I know we only need one kidney but what if something were to happen to your remaining one, through illness or injury?

Don't be pressured into it. If the transplant team can help you get out of it without causing family problems that’s great, but even if not you should stand firm. (And I speak as someone with kidney disease. My children also have the disease but I wouldn't dream of demanding kidney donation from other family members.)

No drip feeding here but if it makes any difference my children are 18, 19 & 20.
I haven't seen my sibling in over 2 years & prior to that it was once every 6 months.

Your sister should perhaps have developed a better relationship with you instead of being difficult.

Mine are similar ages.

From organdonation.nhs.uk...
"Although the legal age for donation is 18 years (16 yrs in Scotland), it is important to think very carefully about donation from young people because they have more life years ahead of them and the risk of developing diseases that may affect the kidneys in later life must be thought about very carefully."

Your children are theoretically adults but they still need you. You don’t have a strong relationship with your sibling. You needn’t feel guilty to stand firm.

I am estranged from my brother - he has three children and so do I.

We haven't seen each other for years and if he was to contact me asking for a donation of an organ for one of his children, I would absolutely say no.

It's awful and so sad that anyone needs an organ but it's a huge commitment. It would also mean that I would then be unable to donate to one of my own children if they needed it.

You should absolutely feel ok saying no, it's a huge ask from someone you don't have a relationship with.

And yes the request came via WhatsApp. That is how we communicate for a number of reasons. It is a group of around 15 cousins, aunties & uncles.

It would be a no from me too.
My questions are, why hasn't sister disclosed the illness? Is it hereditary? Why didn't she ask something so personal in person?

Exactly the same kind of unacceptable emotional blackmail the OP is experiencing from family.

I'd keep your DC out of it. Young adults are often a lot more naive about long term consequences of things and want to be seen to do the "loving thing" so may out of a misguided altruism want to consider donating without really appreciating the potential pit falls.

I was asked recently to donate to my 65 year old brother - he was incredibky nasty to me growing up and is a very difficult person and has been a functioning alcoholic since his late teens. I live in another part of the country so don't see him often. I had no wish to donate ( my body and soul belong to my DC) but thankfully know my blood type that isn't a match for him. Now he is sayong that his consultant says that doesn't necessarily rule me out and like you will ahve to make a difficult phone call

@InterIgnis then perhaps this topic isn't best placed within the AIBU forum, since whether or not her stance is unreasonable is of no interest to her.

So do I. But not for your unpleasant reasons.

If they do hopefully they will not engage in emotional blackmail having been on the receiving end of it.

YANBU
You are not a match anyway, based on the simple fact that you don't want to donate. That would rule you out, and the transplant team can tell your relative that you are not a match without going into the reasons.

There is a lot to it & you have multiple discussions with psychology etc to make sure you are aware of the risks etc. Your reasons for saying no are valid & people saying they can't imagine saying no to a niece are fortunate that they haven't been in that position. At any point your own child could need a kidney, then what? You've given yours to a niece you don't have any contact with.

Or perhaps those that don’t like the fact that OP is sure of her decision to not donate, and thus have nothing useful to contribute in regards to what she is actually asking, could back on out the thread and not engage with it.

Ehhh? I anaesthetise for kidney removal surgery often its straight forward and low risk for the donor.

It's predominately key hole and very safe, far far safer for the fit healthy donor than the sick recipient who nearly always has a huge list of other health problems ontop of the risks associated with end stage renal disease (potassium etc). In the vast vast vast majority it has no impact on the donors life, loads of people live fine with no remote issues (hell my aunt and friend found they were born with only one kidney by accident whe investigated for something else)

I would say anyone debating donating for a relative it's far far better for the recipient to get the kidney before going onto dialysis as dialysis itself increases the risk of cardiovascular disease and early death so if can transplant before that stage it's by far the best choice

That was always my feelings too. Too old to donate any longer, but always felt that my "extra" pieces needed saved in case my children needed them.

@newyorksnow Just have the kidney organization let them know you aren't a match. As for your children being tested, "no" is all you need to say. They are still young, and they could, someday, need their "extras" too.
Don't feel guilty at all. I had a friend who donated a kidney to her brother. He recovered quickly, and it took her a long while as the surgery is much harder on the donor.

I would be taking a step backwards here initially, do you know what your nieces condition is? Is it something potentially inherited? Is there a chance your own children could be affected later down the line?

Personally, I'd leave the decision in your children's hands as to whether they'd like to consider donating or not. You can let them know your opinion and ensure they're well-informed, but I don't think it's your place to deny them the knowledge that their cousin is needing a kidney donation and that they could be a potential match.

@newyorksnow My friend , while working, felt an agonising pain in his back and collapsed with pain.

It was a kidney problem, it came on out of the blue {He doesn't drink and eats healthily}

He had to have a kidney removed, and is living off just one.

It left a huge scar, like a ''sharkbite'' on his torso-

HAD he donated a kidney, he'd have been dead.

We have two for a reason.

Donation 'Post mortem' is different, of course.

A lovely young man who died in a freak accident helped people live from his donor card.

One of the recipients a few years later won a medal at the Transplant Games, and gave the medal to R's Mum.

This still makes me well up.