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.

Also for what it's worth as a stranger, you don't sound remotely a horrible person to me.

You can only give consent legally if its not under undue pressure.

The emotional blackmail here, makes it impossible for you to do so.

In this respect, you could actually go to the hospital for the test and say openly to them that you are not happy about the situation you feel under undue pressure to consent to this, and how do you handle this situation.

Ethically the hospital shouldn't take it further with you because you aren't freely consenting.

It possibly is worth discussing with the NHS services because you won't be the first person in this situation and they possibly will be able help you / give some advice.

No matter how sick your teen relative is, it is still a massive risk to your own life to give one of your own - it could have huge implications to you at some point. I don't think it is a fair question to ask relatives tbh. It is for relatives to potentially offer, but the question in reverse is absolutely not ok, because of the dynamics it creates.

YANBU. No- one has the right to emotionally coerce you or your DC into donation.

I have nieces/ nephews I wouldn’t hesitate to be tested for and others I would say No.

That is absolutely my right.

This is why we should resist legislation for assisted dying. The bullying in families could become very dark.

It's not wasting resources if you aren't going to be sure of your decision without going through that process. It's a total waste of resources if, like OP, you have decided already. That would be pissing away NHS money and time this DC may not have, for fuck all.

Sibling isn’t being unreasonable by asking.

But they are definitely being unreasonable by being pushy.

Did you not read the OP @whosaidtha

You’re doing the same kind of emotional blackmail. You’re lucky to have such good family relationships that you feel this way. It’s wonderful for you (I’m not being sarcastic - it sounds great).

But @newyorksnow does not have the same relationship with her sister and niece. That’s sad, but the OP’s bodily autonomy and consent must be respected.

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.

All of this is helpful, I’ve tried to balance the pros and cons and I know it’s not a road I want to go down. It’s pointless me starting the screening process and wasting NHS resources or raising the hopes of my sibling. I have no information around the circumstances the need for the transplant my sibling just sent me the transplant team contact details.

I think the main reason this stuff is hard is that willingness to donate can seem like love. If no one will donate in your family it feels like they're saying they don't care if you die. Obviously it's more complicated than that but from a terrified mother's point of view the nuance is lost.

So... If you think you can support her and show her care in other ways that might be a way forward. Obviously I don't know how bad your relationship is and it's totally understandable if you need to keep a distance.

Call the team.

Tell them you don't want to do it. Not wanting to do it makes you an unsuitable match.

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

A young teen who needs a life-saving transplant is not responsible for the relationship you have with his mother- that is 100% sure.

I'd like to think that I would do it but realistically the thought of any surgery that wasn't for my benefit scares me shitless & I'd probably get someone to tell them asap that I wasn't a match.

And just to add@newyorksnow You are not a horrible person.

The very fact you’re agonising about this shows you’re not horrible.

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

I would not do it. I would not tell my children.

It would negatively impact their own lives to even be asked. It would cause them significant stress and worry.

I'm not a fan of living donation because of situations like this. Inevitably people are pressurised to 'do the right thing' - which is very rarely the right thing for them.

The donors can have significant negative impacts to their own health and the person receiving the donation may have only limited or temporary benefit.

Well, if the condition happens to be one that runs in the family and one of OPs loved ones is affected, refusal to donate now means she might be able to help them then.

And this is actually something that needs to be considered, since she doesn't know what DNs condition is.

I'm sorry you're in this situation @newyorksnow , and that your family is.

If you have other health issues then you'd be unlikely to be a suitable donor even if you were a genetic match. And that's before even considering whether you would want to be a donor.

Being a living donor of a major organ is a big commitment, and it doesn't make you a bad person if you can't make that commitment - you have to balance the benefits for the recipient against the potential consequences for you and your own family.

What you could do, if you don't want to donate and you don't want your children to be put under pressure to donate, would be to contact the transplant service, explain that you're being put under pressure and can they just mark you and your children down as not suitable donors because a) you have other health conditions, b) at least one of your children also has a health condition, and c) you're being put under unreasonable pressure. You can then say to your relatives that you've had contact with the transplant service, and unfortunately they've said that you aren't a suitable match, and that the reason for that lack of suitability also means your children wouldn't be suitable matches. If you think they'd approach your children directly, you could say something similar to them - you've been told by the transplant service that none of you would be suitable matches. That way your children wouldn't have it come at them out of the blue.

I hope your relative does get a kidney soon, and that they can make a recovery.

You don't have to do anything you don't want to do, and as pp have said, donor coordinators will know immediately if you're not chomping at the nit to do it and reject on that basis. You also have the right to change your mind right to the moment you're on the theatre table.

There are a few misunderstandings I can see though. The op for a donor is absolutely not harder for a donor than recipient. A recipient just feels better quickly because they've been so poorly beforehand. Donations are via keyhole so three tiny incisions.

Saying that, it's a big thing to donate part of your body so don't do it unless you're desperate to. I'm sure your niece wouldn't ask someone who she thought was uncomfortable. I didn't ask anyone, a few unbelievably generous and special people offered.

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.

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.

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

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.)

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