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!

A family member needed a kidney and only some of the siblings were willing to be tested. There was no expectation for them to be as it is a choice that affects the donors life, okay not drastically, but it does affect. Had they not found a donor amongst the siblings then some of the generation below would undoubtedly have been willing to be tested, but not all of them.

No-one should be pressured into being tested to become a living donor.

YANBU at all. It’s incredibly easy for people to say they wouldn’t hesitate to donate a kidney to a complete stranger and there’s no impact on the donor. There is an impact, and you don’t know what it will be until it’s too late. It’s a huge, huge decision absolutely fraught with guilt and obligation and nobody can know what it feels like to be faced with it. I have been. If you want to PM me I’m very happy to talk privately about it.

But please don’t let your partner be bullied into donating. It’s too big for that, and saying no does not make him selfish or hateful. I’m really sorry you’re all having to deal with this.

Maybe it's worth talking to his sibling, ask them what they'd like to happen (with no promises), it might be they don't actually expect him to get tested or donate anything but rather it's the family piling on the pressure. He may also say that he'd like him to be tested and donate if there's a match. At least if the siblings spoke they'd understand the other slightly better.

If it was my sibling (I'm younger than you by the sounds of it with a reasonable relationship with my sister but not half brother) I'd have a chat, not make any commitments. I'd probably be tested without them knowing if it was a possibility which would hopefully give me chance to think things through. I'd probably more than likely donate to my sister (she's younger than me and there's that pressure as an older sibling as well) but would have to really consider the impact more if it was my older half brother. We just don't really have a relationship beyond being friends on Facebook and occasionally saying hello when we see each other in passing. I'd have to really consider the impact on me and my future if it was my half brother and while I understand it sounds selfish is draw a distinction between the 2 my relationship with each is very different.

You could of course lie and say that your partner cannot donate due to health reasons. The person donating will have to change their lifestyle etc so its not straightforward.

It is perfectly reasonable to say that for personal reasons your DP does not feel able to consider being a kidney doner

I'm not sure I would do it for anyone other than my DC or DH tbh

I’m not pretending it’s an easy thing to do but what is the reality if he doesn’t get a kidney?
On the other side of it, are you and your DP ok with the prospect of his brother dying when your DP may have been able to stop that happening. I realise what I’ve said is quite emotive but it’s something to consider.
I’m confused about why you’ve said financially they’re ok; does that mean it’s ok if something happens to him.

It is not selfish at all to be unsure about this sort of thing.

Even if your DP was a match, he would have to be 100% certain that he would want to go ahead with donation. He will be assessed both physically and mentally. Any sign of coercion from family, donation wont go ahead.

I haven't voted as this is a massive decision and not something strangers should just 'poll' on.

My first thought was that, quite frankly, if I could save the life of a young father by giving one of my organs, I'd do it in a heartbeat - even if they were a complete stranger. I can't perceive that 'not being particularly close' to a sibling would be a barrier.

However, I do also hear your fears about work and security and I would then have to look in more detail as to what donating an organ actually entails and the actual physical risks, about which I don't know much detail.
But I still think I would struggle to live the rest of my life knowing that I could have saved my brother's life and I chose not to.

OP, what are the odds of him being a match? If he just got tested is it more likely than not that this whole thing would go away anyway?

I wouldn't test if I wasn't sure I could donate and no I wouldn't give a kidney to a stranger or distant person even if they were related to me.

I will happily donate anything after my death but no organs whilst I am alive.

OP, even if something doesn't go wrong, the financial implications of recuperative leave might be difficult. Don't others minimise the adverse effects of job insecurity and financial disadvantage. Not to ask them but do you think they'd subsidise your income for life if your DH's operation went badly?

If you both don't feel comfortable and he isn't close to his brother then your choice is your choice. Otherwise, it's not a choice.

FWIW, if the brother's partner and the other family members are keen, have they looked at a circle of matching donors (where the donation services manage voluntary living donors so recipients get a matching kidney from a non-family member who, at its simplest gets a matching kidney from the reciprocal non-family member)?

Good luck.

@BackforGood, that's an admirably high personal standard. You don't need to be related to someone to offer a living donor kidney if you have two that are functioning.

@BackforGood

I haven't voted as this is a massive decision and not something strangers should just 'poll' on.

My first thought was that, quite frankly, if I could save the life of a young father by giving one of my organs, I'd do it in a heartbeat - even if they were a complete stranger. I can't perceive that 'not being particularly close' to a sibling would be a barrier.

However, I do also hear your fears about work and security and I would then have to look in more detail as to what donating an organ actually entails and the actual physical risks, about which I don't know much detail.
But I still think I would struggle to live the rest of my life knowing that I could have saved my brother's life and I chose not to.

It’s not as straightforward as ‘saving someone’s life’, though.There’s a lot of information online about risks and benefits, physically and psychologically:

weillcornell.org/services/kidney-and-pancreas-transplantation/living-donor-kidney-center/about-the-program/risks-and-benefits-of-living-donation

www.beaumont.ie/kidneycentre-becomingadonor-risks&benefits

The second link has just reminded me that I know someone who donated a kidney to a family member a long time ago and, ironically — though apparently this is actually normal — was far more ill after the operation, had far worse pain etc. It’s not a small operation — weirdly, the actual surgery of kidney removal is more difficult than having one transplanted — and it can be a three month recovery period, with the donor unable to work.

You can speak to a doctor who will be happy to report that you arent a match, lie though it is. The doctors want willing donors and cone across this all the time. Both problems solved.

Incidently the donor in these cases suffers significantly more then the recipiant as the surgery is more invasive and they are losing an organ. It can take months to recover and shorten your lifespan.

We are currently on the other side of this – DH has been on the transplant list for 2 years waiting for a kidney. I agree with everyone else, we would never expect someone to get tested (as it happens SIL offered but wasn't a match), particularly as the impact on the donor can be significant.

It's a big undertaking and no should ever, ever be pressured into it.

And if anyone wants to save the life (ignoring dialysis which is arduous at the best of times) of someone they don't know -

www.organdonation.nhs.uk/become-a-living-donor/donating-your-kidney/donating-a-kidney-to-someone-you-dont-know/

And if any family members are not a match then, subject to health checks, they can explore pool/pair/matching -

www.donatelife.co.uk/?page_id=288

Hi there - anyone offering to be a living donor gets extensive screening, physically and mentally. They have to be 100 per cent committed. If your partner speaks truthfully during this process, it sounds like it he would be rejected at this stage for not being fully up for it.

I have also heard informally from more than one source that if requested, the screeners will happily tell the potential recipient that the potential donor is not a match when this is not true. In other words, lie - if they believe that unfair pressure is being applied, for instance.

However the family really should not be putting you in this situation in the first place.

Also, what morningstar66 said. The recipient's life may well be improved, but the donor's quality of life will suffer. Possibly not badly, but there is almost always some kind of impact on them.

For balance, the risk of dying appears to be c0.03% (3 in 10,000) and the estimated effect might be the reduction of c0.8 of a year of healthy lifespan so not to be ignored but probably less than many lifestyle choices.

My DH received an organ from a transplant from a family member. We are incredibly grateful.

When my mother needed a transplant, I didn’t get tested. I had a young child and a long history of health problems. I agonized over that decision. It turns out that there was no family pressure. There was a family meeting and everyone, including my mother, had decided that I would not be allowed to donate. The rest of them did get tested.

This is a highly personal decision. I would recommend your partner think about how he will feel if his family member does die. The guilt of inaction is not to be taken lightly. One possibility is to be tested/screened discretely. Then he would at least know if there was even a real choice to be made.

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).

My husband was recently tested to be a kidney donor for his best friend. he wasn't a suitable match in the end but the process is very thorough and if there is any hint of coercion then they won't go ahead. The donor and recipient teams are totally separate and if your partner is a match but decides not to go ahead then the recipient team will be told there was no match.
It's a huge deal, serious surgery and not something to be taken lightly. My dh hadn't considered half of the implications before being tested.
Don't be forced into it. Dhs friend is having dialysis now and is on the donor list. It's not the end of the world if a match isn't found.

I would make up a health reason to say no. But there's zero way he should do this. If it goes wrong he'll be thrown under a bus.

YANBU.
His body, his choice.

I have a condition that means I may well need a transplant at some stage. My sister said when I was diagnosed that she’d happily donate part of her liver if I needed it. My response was one of absolute horror. My children need her as a fit and well Aunty and she has her own life to live. I could never take that from someone living. Post death, absolutely, but living donation is a huge deal.

If your partner is at all uncertain then that’s fine and he should never be made to feel guilty about that