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'm glad your niece is doing OK.

Maybe I'm an awful person too but the possibility of her condition being hereditary crossed my mind too. In your shoes I'd be worried my own kids might eventually need a transplant, which would of course make me even more adamant that I'd not donate now. Perhaps your MIL was trying to reassure you on that front.

Ofcourse you would worry it was hereditary
Anyone would. That does not make you a monster

I was diagnosed at 32, with 3 types of kidney disease’ .. 7 years later i have lost 70% function

All my siblings know what to look out for in them and their children, i just hope none of them get it (and thats why i would never accept a kidney from my siblings, just incase there child needed one in the future)

I feel sorry for your siblings child and the fact that they need this kidney transplant in the first place but what they are asking is huge especially given the family dynamics and you are absolutely under no obligation to commit to this. It’s not like they are asking for a lift to the airport it’s a huge huge thing to put yourself through. Like others have said I would contact the team and explain your medical history and perhaps just WhatsApp them to say you’ve done that and you are incompatible.

I am glad to hear that your parents have "withdrawn" their offer. I'm sorry but if someone knows details of something illegal that is happening and doesn't do anything about it, that is he very definition of complicit. You must be relieved to know that this no longer applies to you.

oh give over - do you not think the OP has enough going on without you putting the boot in? It was her own children offered money, and she's already protecting them from potential harm by being there to counsel them. It's not like she walked past an organ harvester working on a street corner and did nothing.

Hi OP, just wanted to let you know as a reasonably young transplanted woman, I would never dream to ask anyone to get tested. It’s one thing to make people aware of the hospital details should they wish to consider it (I didn’t even do this as I felt that alone would look presumptuous).
My incredible sibling came forward and got tested without me knowing much, and it turned out he was a match. I have a big family, none of my other siblings got tested, and no one in my extended family did. A close friend did though.
I’m sharing this as I want you to now that even when you have kidney failure and are in an awful situation on dialysis, no one would want a family member feeling in any way obliged or pressured- it’s a very serious matter to donate an organ and the Human Tissue Authority who interviews both donor and recipient won’t allow the donation to happen if there’s any sign of coercion.
more than anything, your niece/nephew as they grow older, will feel a deep sense of indebtedness, and this is something I personally find very difficult to process as a recipient. My other siblings sometimes signal a kind of guilt that they didn’t get tested but I told them that I never would expect them to.
Trust me, don’t feel you should get tested, you do not owe anyone a single explanation - it’s totally inappropriate for anyone to be making you feel otherwise.

Thanks for sharing your story.
It sounds like you have family & friends who care deeply for you and that you can trust.
I hope you continue to have improving health with the support of your loved ones. I’m very envious of this kind of family dynamic tbh.

Some of my family members are the worst kind of people and I think I’ve developed a hardness over the years that makes me seem cold and clinical.

In some ways it made my decision easier. I know I can’t help my sibling’s child but I wish them no ill will. My eldest children have made their own decisions and are not suitable donors either.

The reason for the kidney failure was disclosed by my mother and my sibling is now very quiet on the WhatsApp.

I just hope that there is a positive outcome.

A rather sad and depressing update to the situation today.

My ever-loving mother informed me via a long voicemail that “the panic is over” and “we don't need to worry about THAT (her emphasis, not mine) part of the family any more”

My sibling’s child is still very much in need of a healthy kidney and is now receiving dialysis whilst on the waiting list for a donor.

The news that my mother gleefully regaled during the message was that she has, all along, suspected that the child’s parentage was not clear and she’s just had that confirmed.

There’s nothing that I can (or will) do with that information. I’m not even sure whether she had permission from my sibling to disclose this.

I am unable, right now, to sever contact completely with my parents but in the next year this will happen. In the meantime I shall keep any comms polite and factual.

The whole situation is just a study in toxic family relationships.

I feel for the child in this situation, being surrounded by such a sticky web of duplicity and toxicity from the adults in their life whilst also being so unwell is horrible, and no matter how much adults try and keep kids in the dark about these things they will probably have some notion of the tension.

ETA sorry if this is an insensitive thing to say

Stay strong , OP .
I would refuse too ; I'm saving my organs for my children , my grandchildren and myself .

What has parentage got to do with anything? I'm so confused. Is your sibling male? Therefore this niece of yours isn't actually your niece anymore, is that what you mean? Even if that was the case, it shouldn't matter anymore in this context, at least? Surely

oh heck, what an update. I'm so sorry you are having to deal with this shit show, and I wish you peace when you are able to sever contact.

It’s not the ethics of donate or not donate for a family member. The child is still family or at least should be.

the issue is that a match is much more likely to come from a genetic relative. It’s not just an issue of having the same blood type. There are several things they need to test for.

I think you're doing a great job OP trying to navigate this situation carefully. What a drama though.

Not heartless at all. This isn't about lending someone a few quid, it's about giving them a part of your body, undergoing risky, major surgery to do so.

So sorry to read your update and the almost gleeful tone of the note from your DM. So not only is DNiece on dialysis but she's found out in the cruelest way during testing that her dad isn't her dad? No wonder you steer clear of your family. Poor child.

It’s a horrible enough situation that my sibling’s child is so unwell that they require an organ donation and now it’s seems that there is fresh layer of family skid marks that my mother will air to the world 🙄

That may sound flippant but the woman is truly beyond awful. Were she not my mother there would have been a parting of ways a long time ago. I live 4 hours away from my parents & sibling so it’s easy to keep contact minimal. My sibling has never been to my current home.
I mentioned that there were some awful family dynamics at play and I have only realised in more recent years how bad things are.

I often recognise some of the behaviours that are described by posters on their own threads about entirely different circumstances and really want to say don’t waste your time trying to appease or hope that they will change. Those of you with loving, caring, messy, wild, wonderful families; cherish them.

The appeal for a living donor for my sibling’s child has now been picked up by a community leader in their area so I think that this may become public.

Keeping out of it all from now on.

My sister’s an absolute cunt & we’ve not really spoken in years. But if I thought one of her kids needed a kidney I’d be there. It’s your choice, but it could be one of your kids.

Might be helpful to read all of OP's posts before self-eulogising.

Keeping out of it seems the best course of action.

And if your mother airs it to the world then it will say more about her than anyone or anything else.

I hope things resolve themselves as well as they possibly can.