Organ donation in partner’s family

[Flawedperfection]

Hi,

First time poster, longtime lurker.

As the title suggests, I have a question about organ donation in my partner’s family.

My partner’s brother needs a kidney and has done so for a while. Some family members have been tested to no avail and now it’s widely considered to be my partner’s “turn” to do so. The issue is that they are not close and whilst my partner is concerned (naturally, as a fairly decent human being) about their sibling, it’s a big thing to do for someone you don’t care for/aren’t in touch with and are unsure if you want to take such a risk for.

Sadly, the sibling really does need the kidney and has two young kids. Their partner is not a match. Not relevant, but financially they are ok. My partner is not ok financially and is a job hopper with no real security (same for me).

I’m concerned that my partner would give the organ and if something went wrong be screwed, financially and health wise. We have no support of any sort from family and are private renters. For full disclosure we don’t have kids as it didn’t happen for us so we don’t have young people to let down, but I also feel this is why we are feeling pressured for my other half to test and donate.

Thanks for reading!

Yanbu- it’s a risk with no guarantees for all involved
Yabu- don’t be selfish- it’s just a kidney; your partner will recover, should be able to mange with just one and must help!

For what it’s worth, my mum was a live kidney donor and is absolutely fine. However, there were hoops to jump through and unless you are 100% committed to it then you won’t get through the psych evaluations anyway.

@Flawedperfection

Such a hard decision- what if the kidney my partner is left with goes wrong (although we realise they only take one if you’re considered healthy enough. But we have (maybe stupidly) read some case studies where it was like “on yer way now” once they got what they wanted from the donor. Obviously it is all about the recipient really, and I’m terrified about the aftermath and aftercare (or lack of) for my partner.

To the posters who mentioned finance; I meant that the brother has a house and finances if he needs to take time off work. My partner has v little due to private renting and securing a decent job/career with his specialized qualifications. He has no debts but no savings or job security. Also, our families can’t/won’t help us financially (not saying they should though).

It's a non-starter, your partner can't do this. HIs family are gits for expecting this from him and especially if not going to help him. I'd honestly say no but say I have diabetes or something.

As a pp said you can go along to be screened and tell them you’re under pressure from family and they will tell him you’re not a match whether you are or not, it might be the easiest way out of a difficult situation.

I voted YANBU, your concerns are valid and the only thing that matters is how your DP feels about it, there is no right or wrong in this situation.
If he does get tested and is a match is this automatically disclosed? Not sure how it works in the UK.
If not then maybe he could get tested and take it from there, if he’s not a match then tell everyone that, if he is a match but doesn’t want to do it then tell everyone he wasn’t a match, or if he decides he does want to do it tell them the truth.

For what it’s worth I would give my brothers anything they needed, but we’ve always been close even living in different countries. I also had a cousin a few years back who needed a kidney transplant and got tested for her, not surprisingly I wasn’t a match, so not sure how I would have reacted if I had been in a position to donate, but I would have always wondered if I hadn’t got tested. Luckily she did get a new kidney in the end.

@TheRebelle

As a pp said you can go along to be screened and tell them you’re under pressure from family and they will tell him you’re not a match whether you are or not, it might be the easiest way out of a difficult situation.

If that's true I'd go with this.

YANBU. No way should your DP do this unless he 100 % wants to. Your DP should either tell his brother no and why or of he really doesn't want to do that he could see if he's a match and then 1. He isnt so it isn't important 2. He is and can say he doesn't want to so he's rules out, but tell his family that hes been ruled out but not why (so he isn't lying, but doesn't say why). I think he should just not offer to get tested and then if asked say no, but obviously it's easy to say that as it's not me and you don't say if your DP has actually been asked or if you just feel like everyone is waiting for him to offer, but if they are waiting for him to offer then I wouldn't talk about it with them until they ask.

I think if I was feeling assertive then before going through the motions of being tested, I'd ask the relevant family members why they expect him to undergo a general anaesthetic and surgery for a brother with whom he's not close and also how far they've progressed in matched donation.

It sounds like partner is worried about himself (and he is, as am I) but he’d also hate for it to go wrong and be a waste of everybody’s time. What if the organ failed after a short time?

I know we sound like negative catastrophists (is that a word) but we are naturally quite pessimistic people and have heard so many horror stories for both sides!

@Flawedperfection

It sounds like partner is worried about himself (and he is, as am I) but he’d also hate for it to go wrong and be a waste of everybody’s time. What if the organ failed after a short time?

I know we sound like negative catastrophists (is that a word) but we are naturally quite pessimistic people and have heard so many horror stories for both sides!

You and he do not have to justify your reasons. ALL of them are valid. Honestly, find a way to get out of it.

I think this is something that your partner should have specific counselling for. It’s a big decision either way because there are the repercussions of the long term guilt if they say no and their brother dies as well as the potential to go wrong for saying yes. Whatever the decision, it’s not as straightforward as saying yes or no. However, either decision is completely reasonable to make and understandable.

@osbertthesyrianhamster when I was looking at being tested as a match for a family member I was told that they would tell them I wasn’t a match rather than I didn’t want to do it if it was needed.

Has he considered getting tested to see if a match and how that then makes him feel.

He may not be a match and then all of your worry and concern is for nothing.

If he is a match then his sibling instincts may become stronger and he may feel he wants to. Or that the prospect is so real that he cannot afford himself to put himself through the survey and recovery for the sake of his own health, wealth and family.

You may get the outcome you want without having to outright refuse...

What does your partner think?

Thanks for all the replies which are for the most part, extremely helpful and non judgmental.

The horrible thought is that if his brother dies due to no organ, my partner will be devastated. But there’s no guarantee it’d work or even that it’d last that long. Some kidneys transplanted can last up to 20 years, but some don’t.

But yes, back to if his brother dies: the question is could we go to the funeral and then continue our lives without overwhelming feelings of regret or guilt? I don’t know, but I do know that it’s shit all round really, isn’t it?

I agree with a past poster that if he got tested and was an outright “no”, that’d show he’d tried etc, but how awful if we felt a sort of relief at that outcome?! Just awful and of course I feel for his brother.

Hi @Flawedperfection

I have some experience of this
If he has people willing to be live donors but who are not a match then the paired/pooled scheme would still apply

www.hta.gov.uk/faq/what-paired-pooled-donation

No one should be guilted into donating (and in fact their are rigorous processes to prevent this)

I'm not close with my brother in that we rarely talk and live long distance but if he needed a kidney or a piece of my liver I would be first in line to be checked as family is family. Might not even be a match. The best thing is get tested without telling the brother. Tell doctors not to say if dp is a match until decides if wants to go through with donating. If not a match your worrying over nothing and if they are counciling will advice on options.

@TheRebelle

As a pp said you can go along to be screened and tell them you’re under pressure from family and they will tell him you’re not a match whether you are or not, it might be the easiest way out of a difficult situation.

This is definitely the case, and probably the most sensible course of action for your partner. It will avoid family bad feeling, and no-one will be told the reason for him being rejected as a donor.

@FortniteBoysMum

I'm not close with my brother in that we rarely talk and live long distance but if he needed a kidney or a piece of my liver I would be first in line to be checked as family is family. Might not even be a match. The best thing is get tested without telling the brother. Tell doctors not to say if dp is a match until decides if wants to go through with donating. If not a match your worrying over nothing and if they are counciling will advice on options.

And what if your DC needed something in later life that as a result you could no longer provide? Also, "family is family" is a bit of a sweeping one. 87 year old uncle?

Thanks, @FortniteBoysMum, I hear you but also need to tell you that some family members are shit. I don’t have a single person I can rely on and have been let down. Same for my other half. Neither of us owe anything to anyone or even each other, sorry. I am n/c with one parent and l/c with another. Lovely if you care about each other but some families don’t and will only get in touch when they want something.

Honestly, the transplant team will likely conclude he's not a suitable match - not because of his blood & tissue types but because he's unsure about it. Potential donors have to get assessed by a psychologist and if they're not sure they can go through with it the potential recipient will be told he's not a match.

Might be the least awful option.

It's also worth pointing out that there are paired donation schemes out there, whereby his DW can give her kidney to someone in return for her DH getting one from another person related to the recipient.

www.odt.nhs.uk/living-donation/uk-living-kidney-sharing-scheme/

Hi OP. I've name changed specifically to comment on this thread.

I received a kidney transplant several years ago from someone very close to me who was tested and a match. There are clearly two sides to this and I'll try and summarise both.

If the brother is at the point of being tested then he must be on dialysis. I was and it's terrible. It only replaces one part of the kidneys functions and the rest are managed as best you can with meds. I can only describe being on dialysis as life standing still for you. Everyone gets on with day to day life but you are beholden to either several full day visits to a hospital each week or hooking up to a machine each night (depending on what type you have)

I say the above as it can totally mess with your view of the world and allow you to create pressure on other people without really realising it. I was soooo careful not to guilt family or friends and very much put on a happy/ brave face through it all so as not to emotionally guilt anyone. But it is hard and at times the facade dropped for me and I had tearful conversations with a family member who was trying to decide whether to donate. In hindsight it must have added so much pressure but emotions run high.

There is also the normal deceased donor waiting list. This is prioritised by need and I have known people wait just a few years to get that gift. Dialysis does damage organs over a long period but it does work for a decent period without doing harm so there is a real possibility that this path may yield results for him.

The testing to donate is rigorous. I cannot stress this enough. You are simply not allowed to donate unless you are considered an absolute specimen of perfect health and your kidney function is well above average. This is then followed up by annual checks on your health. For this reason the one donating does benefit from these annual health checks and in all likelihood any potential problems are caught early

With the above being said, recovery is slow for those donating. It is completely normal as others have said, for the one who receives the kidney to bounce back more quickly. Think of it this way: one person has a full tank of petrol and the other is running on fumes. When half a tank is transferred to the one on fumes, it's like a shot of adrenaline! But the one losing half a tank has to get used to it and although they will get back to full strength, the period of adjustment can be a couple of months.

Also keep in mind that the one donating will likely be done via keyhole surgery unless good reason not to. So the recovery is less from the surgery and more from the body adjusting. My doner ran a marathon a year after donating and luckily is in fantastic health: but that doesn't diminish the risk she took.

Lastly, from a transplant patients perspective, It is the most wonderful gift that I will never be able to put into words. It has changed my life, given me a family, allowed me to walk the dog and do umpteen other things I could only dream of. And dreaming was what I did a lot of on dialysis. So I would urge your partner to think carefully and only get tested if he is sure he will go through with it (if he is in good health to). I had a family member unsure and be tested to then pull out. It was gut wrenching and as they test one person at a time, took up precious time that could have been spent on someone else. I bear no ill will but at the time, it was like the rug was pulled.

I hope the above was helpful and please don't let your partner be guilted as it is not something undertaken lightly.

If he gets tested and can't donate, his conscience is clear.

If he gets tested and can donate, the donation team will give him counselling to make sure he is doing the right thing for him and his brother.

If he doesn't get tested and his brother dies, he might always blame himself.

I would get tested and trust the counselling process to help me reach the right decision.

And (in my experience) getting tested without the brother knowing is impossible.

The first thing that will happen is the potential transplant patient is called to see if they know the person and are happy for them to get tested (I know this as I had an old friend ring to get tested on the quiet but my team stated they had to ask me. I didn't want her tested as she is the sort to hold something over you so we came up with a legitimate reason she wasn't eligible)

If your partner is tested, his brother will know.

I need a kidney transplant and despite being desperate to survive for my two small kids, I would never want to take one from someone who wasn’t absolutely sure they wanted to. It is not a high risk op or they wouldn’t do it (the health of the donor comes before the recipient) but it is definitely not zero risk and not a minor procedure. That said it is an incredible amazing thing for someone to do for someone else and that might be something your DP could find very fulfilling. The process is so thorough and there is no way he could be coerced into doing it, they would only let him if he really wanted to (and was very healthy). Have a chat with the transplant nurse, she might be able to answer some of the questions you have but no one should ever feel pressured into doing this.

On another note, for any kidney patients we have a rubbish kidneys support thread in general health if you need any mumsnet support on the matter.