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Original poster

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:
Yousay55 · 20/06/2024 17:49

I wouldn’t ask my children but I would test myself.
Yes it’s your body and you’re free to do what you will. I have no contact with my dsis but I would do anything for her dc.

Hoppinggreen · 20/06/2024 17:48

Isometimeswonder · 20/06/2024 15:23

I can't imagine not wanting to help my neice/nephew.
Even if I wasn't close to their mother or father.

I can
The only people who would get any bits of me are my DC

countcalculia · 20/06/2024 17:48

OhmygodDont · 20/06/2024 15:24

I’d rather save my kidneys or any organs for if my own children needed them tbh 🤷🏻‍♀️

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Yep, or my mum or dad.

mrsdineen2 · 20/06/2024 17:45

fungipie · 20/06/2024 16:48

Your choice. I do sincerely hope neither of your loved ones need a life-saving transplant in the future.

I share this hope, but not your fucking nasty undertones.

TooLateForRoses · 20/06/2024 17:44

How did she contact you? This isn't the sort of thing you WhatsApp someone

Greenlittecat · 20/06/2024 17:44

The only people I would donate a kidney to is my children. I wouldn't ask them to donate to a distant relative either.

You aren't a horrible person for not wanting to, its a huge ask for a close family member, let alone one with a complicated history!

Bumblebeeinatree · 20/06/2024 17:44

I would get tested, my children an absolute no. And I guess if I wasn't a donor it would be very unlikely my children would be as I would have passed on the relevant genes. If you are a match that is another decision.

LobsterWeb · 20/06/2024 17:44

OP, it's reasonable to take as long as you like to think about it. The testing process, if you did begin it, takes several months, if not longer.

After the blood tests for matching, they only do the full testing on one potential donor candidate at a time, then if they are unsuitable or withdraw then they move onto the next.

TooLateForRoses · 20/06/2024 17:43

MrsSchrute · 20/06/2024 15:28

Totally agree. I cannot understand this mindset at all.

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That is what they call a "you problem"

Shewaswanton · 20/06/2024 17:39

Your sister's high-handed attitude is unbelievable. She's not even deigned to give you any details concerning the illness, or the urgency of the operation.

That alone would rule me out. As for my children, I'd not even give it a moment's thought. No way would I even be letting them know about the request.

My god, some people!

TooLateForRoses · 20/06/2024 17:39

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

Yes! Maybe they'll see it and the problem will be solved

TooLateForRoses · 20/06/2024 17:36

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. They are brilliant. You won't be a match as you don't want to do it.

AnotherMummyHere · 20/06/2024 17:33

I donated part of my liver to my daughter 10 years ago.
There are lots of tests. If it's the same as liver the first 'hurdle' is that you need to be the same blood group, so that might give you an indication of whether it's even viable. Also, one of the tests is a meeting with the Human Tissue Authority. They will want to determine that the donation is completely voluntary and that there is no coercion or pressure being applied. They will 100% not allow the donation if they think that there is. They have a duty of care to the donor.

If it's easier with the family dynamics then contact Blood and Transplant and have a conversation, it won't be relayed back to your sister.

🤗

Original poster
newyorksnow · 20/06/2024 17:32

PoopingAllTheWay · 20/06/2024 16:53

Ok - This is coming from someone who will need a kidney transplant very soon

I would never ask my family for a kidney because what if there child needs one in the future, that means my niece or nephew could die because of me , OR if that person dies that leaves their children without a mum or dad

BUT
I can understand your nieces mum and dad’s panic , as there child is very ill

The good thing is : Kidney dialysis and this can keep you alive for many years and give you time to get a transplant and shes young so hopefully will get a match quickly

Do not feel pressure,

Contact the transplant co-ordinator for help on how to say no

Edited

Thank you for sharing your personal perspective, it’s one of the things I’ve tried to imagine how I’d proceed.
Like I’ve replied to other posters, I’m entirely in the dark about the child’s current medical condition so I’m not sure whether it’s a case of immediate kidney transplant right now or that dialysis is happening. My sibling has form for wanting things done on their terms and everyone else has to fit in.

My sibling is probably panicking, as any parent would.

Even so I don’t think taking a few days to think about it & discuss with my husband & two trusted friends was unreasonable and I’m now getting separate messages from my parents & sibling wanting to know if I’ve booked the screening appointment!

I have a free morning tomorrow so I will be making some difficult calls.
Thanks for your wisdom.

OP posts:
Wheresyourvote · 20/06/2024 17:31

I’d donate a kidney to my children, my husband, my parents & my sister. Anyone else would be a hard (but sorrowful) no.

What if I donated my kidney then my own child needed one in the future and I was unable to donate? I understand your sisters plight and maybe in the same position I would ask my whole family too but I don’t think you have anything to feel bad for OP. You don’t even have a relationship with these people.

romdowa · 20/06/2024 17:26

Yanbu ! Personally I'd rather eat my own kidney than donate it to any of my family (except my dc) .you have to do what's best for you and I definitely wouldn't mention it to your children either

Original poster
newyorksnow · 20/06/2024 17:16

thing47 · 20/06/2024 16:43

Hi @newyorksnow I thought you might appreciate hearing from someone whose family has been on the other end of this.

DH required a kidney in 2022. His sister offered to be tested for compatibility and we were told she wasn't by the transplant coordinator. We have no idea whether she wasn't medically compatible or whether she had changed her mind as we weren't given this information. (Important to point out it hasn't affected their relationship at all, they still see each other most weeks.)

DH absolutely refused point blank to consider our 3 (adult) children as potential donors. He would have thought that a totally bonkers suggestion even though he was very ill – dialysis wasn't really working for him and his eGFR (a common measure of kidney function) was 4%.

You may already be aware of this but the kidney donation operation is often more serious for the donor than the recipient. Having a kidney transplant may leave you open to complications and you have to take some quite toxic medication for the rest of your life, but in technical terms the surgery isn't very difficult. Donating a kidney can cause a decline in general health, and that decline can, in some cases, be significant and long-lasting. The removal of a kidney is more complex than the addition of a third kidney, iyswim.

Our story has a happy ending in that DH is doing great 18 months on and has resumed normal life, though he is always aware that he has benefited from a tragedy befalling another family. I think it is fine for your sibling to have asked, once, just as most of us would do for our own children. But that's it. As many PPs have said saying 'no' is perfectly acceptable, for any reason or none.

Thank you for your story, it’s good to hear from the other perspective that there was no impact on sibling relationships.
From my experience when my sibling is told no there has always been conflict.
I’m prepared for that, my children don’t need to be sucked into any family drama. Yes they are adults but still living at home.

OP posts:
Fedupmumofadultsons · 20/06/2024 17:15

whosaidtha · 20/06/2024 15:18

I can't imagine not at least getting tested to potentially save my niece's. I think it's pretty heartless to not at least take the first steps. You can back out at any point.

Sorry but the only ones that the op has a moral duty to help are her own children.no one else sorry .

Londonrach1 · 20/06/2024 17:14

Contact the donation team and tell them why your side of the family...they understand. Them tell sibling you contacted the donation team and your not suitable (they don't need to know why..it's not a lie)

Choux · 20/06/2024 17:12

My brother has lost a kidney to cancer and we joke he has first dibs on my kidneys if he needs one. But I don't and won't have children and he has very young children. I'm also over 50 so... would have less years left than a 25 year old if I suffered consequences of the donation.

I still would need to know the prognosis of my brother with or without the donated kidney before I decided if there was enough of a benefit to him to consider donation. It sounds like your sister hasn't even given you a full outline of your niece's condition yet expects you to rush to the transplant team to be tested. It's not a small favour to ask.

RedToothBrush · 20/06/2024 17:12

Isometimeswonder · 20/06/2024 17:04

Yes I would. To my family. Also to a really close friend too, if it would save their life.
I know someone who lost a kidney to cancer, and having one is perfectly fine.

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If you only have one, you don't have one to lose to cancer though... thats the problem.

TemporalMechanic · 20/06/2024 17:11

I understand not wanting to donate. It's a very personal decision and I have family members I'd happily donate to and others I wouldn't. YANBU to decide against it.

YABU to keep the information from your adult children and not let them make their own decisions on the matter, though. (And I have cerebral palsy and would feel awful if my parents kept something like this from me for that reason - presuming your child with it has no intellectual impairment that would mean they couldn't meaningfully consent to it if they wished to, which would be a different matter.)

Destiny123 · 20/06/2024 17:06

NamingConundrum · 20/06/2024 15:24

Its understandable even if good relationship. Life happens. You could end up donating and having your remaining kidney damaged later, which could kill you and mean you're not around for your kids. Your kids could need a kidney and you would have been a match but already down to one. You could have a bad reaction to the anesthesia and die in surgery.

If you don't want to don't. Tell them you're medically not suitable if you want, tell them none of their business what the underlying medical condition making you ineligible is. Or contact service and tell them they're pressuring you.

Op totally your choice

Just to highlight on this though death under anaesthesia is so so so rare, I've had 1 in 10y and they had a ruptured aorta before we started which had a 50% pre hospital mortality

Statistically organ donors actually have significantly longer life expectancy than the average person as they have to be in such good condition health wise to be allowed to proceed

saffronflower · 20/06/2024 17:06

I would not do it. I would donate bone marrow etc but not an organ. The only people I would donate an organ for are my own children.

I would not feel guilty either. For an operation of this severity and seriousness and a potential recovery time of 4-12 weeks you have to be 100% sure you want to do it. If there is any doubt, you shouldn't.

Your sister is not wrong to ask, thats completely understandable, but your family IS wrong to place pressure on anyone. Its pointless them placing pressure anyway as NHS wont do it if there's any form of pressure so actually, they arent helping their cause by doing that and may actually be making things worse for themselves.

Isometimeswonder · 20/06/2024 17:04

BagPoops · 20/06/2024 16:35

You would agree to sacrificing your future heath and wellbeing and potentially cause yourself long term vulnerable kidney and urinary issues, to help someone you have no relationship with?

I'd gladly give blood/plasma. I would not give an entire organ to someone other than my husband or own children.

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Yes I would. To my family. Also to a really close friend too, if it would save their life.
I know someone who lost a kidney to cancer, and having one is perfectly fine.

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