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!

It’s a really difficult one. If he speaks to the transplant team they may agree he is not suitable (ie he doesn’t want too and is being arm twisted) This can they be relayed to the rest of the family as “just not suitable”

Thanks @SandysMam and @kidneynewname- I am grateful for hearing the other side of the story- that of the recipient and the future recipient. It is truly an eye opener to hear your opinions/accounts and to have maybe more empathy than previously. I wish health and happiness to you both.

I know two people who have been living kidney donors, both for their children.
It is absolutely not something to be for lightly. One is a relative and I didn't want my sister to be tested as she had young DC and hadn't really thought of the impact on her own health.
I don't know if I would have done it, probably not if I'm really honest.
My recipient relative died after a few years. For their parent donating had been worth it to have more years with their child, for one of us younger generation I think it would have been harder to take.
Absolutely everything will be donated after my death but I'm not sure about beforehand (I appreciate that the fact it is now hypothetical for me is a luxury some people don't have).

OP it sounds like your partner is not suitable for several reasons. I think counselling to help him work through his feelings might help.

I was in a similar situation. My stepsister needed a transplant and I got tested and was a good enough match but then decided I couldn't go through with it as I was the only real provider for my child and if anything went wrong, my child would suffer. I decided my child's wellbeing wasn't any less important than stepsister's kids.

It was hard as she got quite poorly and my stepmum kept hinting at how terrible it would be if something bad happened to SS. Totally understand that no parent wants to lose a child but I did feel some pressure.

Happily stepsister got a donor from the waiting list and is now almost back to full health.

I forgot to mention - there's an NHS policy to reimburse expenses/financial losses of donors:

<a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.england.nhs.uk/wp-content/uploads/2018/08/Policy-Reimbursement-of-Expenses-for-Living-Donors-Updated-August-2018.pdf&ved=2ahUKEwjD9YDp1f7wAhXMOcAKHXTBDds4ChAWMAd6BAgHEAI&usg=AOvVaw2N2ork68ctuajuIXC52QHc" rel="nofollow" target="_blank">www.google.com/url?sa=t&source=web&rct=j&url=www.england.nhs.uk/wp-content/uploads/2018/08/Policy-Reimbursement-of-Expenses-for-Living-Donors-Updated-August-2018.pdf&ved=2ahUKEwjD9YDp1f7wAhXMOcAKHXTBDds4ChAWMAd6BAgHEAI&usg=AOvVaw2N2ork68ctuajuIXC52QHc

If your main concern is managing family perceptions, then your DH could talk to the donor team and say that he doesn't feel comfortable with the idea. All your BIL will be told is that your DH wasn't a suitable match.

Not donating (or not being tested to see if he might be able to donate) is a 100% legitimate choice for your DH to make. It's his body, his decision. A hundred years ago this wouldn't even have been something he had to consider. Very best of luck whatever he decides.

20 years is the old number. It was generated at a time when that was really the longest data available.

My DH is over 25 years in and still going strong.

I'd do it for DP, his children or mine. Not that I could due to health stuff, but if I could, even at vastly increased risk, I would.

Everybody else can get fucked if they're getting anything from me - it's not as if they would do the same for my benefit.

[quote HavelockVetinari]I forgot to mention - there's an NHS policy to reimburse expenses/financial losses of donors:

<a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.england.nhs.uk/wp-content/uploads/2018/08/Policy-Reimbursement-of-Expenses-for-Living-Donors-Updated-August-2018.pdf&ved=2ahUKEwjD9YDp1f7wAhXMOcAKHXTBDds4ChAWMAd6BAgHEAI&usg=AOvVaw2N2ork68ctuajuIXC52QHc" rel="nofollow" target="_blank">www.google.com/url?sa=t&source=web&rct=j&url=www.england.nhs.uk/wp-content/uploads/2018/08/Policy-Reimbursement-of-Expenses-for-Living-Donors-Updated-August-2018.pdf&ved=2ahUKEwjD9YDp1f7wAhXMOcAKHXTBDds4ChAWMAd6BAgHEAI&usg=AOvVaw2N2ork68ctuajuIXC52QHc[/quote]
Completely inadequate to a person in the OP's DP's position. For one, no mention of Universal Credit so completely out of date. Also puts the onus of proving loss of earnings on the claimant, that's hard to do given the DP's insecurity of employment.

And if the DP's health is permanently altered by it, UC it is! Ever seen what it's like for disabled/ill people? It's SHIT. In fact, thousands of disabled and ill people have died since the inception of UC and PIP.

Tbh, his family is shit for pressuring him but making it clear to him they won't help if he's the one who becomes ill. For this reason alone, this is a non-starter and a no go.

@Castlepeak

20 years is the old number. It was generated at a time when that was really the longest data available.

My DH is over 25 years in and still going strong.

Just to also agree with this-a transplanted kidney lasting just 20 years is an old number to use.

When going through the process of a living donor, the match is usually much better than from a deceased donor. That, coupled with better drugs regime and post transplant care means 30-40 years is not a ridiculous number. I've been told I may not need another kidney until I'm in ripe old age. (This also assumes the patient doesn't have any other health concerns)

I've just read through this read in a little more detail OP and just be careful as there's quite a bit of misinformation. Those who have been through it or have close contact with someone who has are probably best informed.

I know all about low contact. I have not seen bio father in 30 years. Most of family I have not seen in 17 years but look at it another way. Could you leave those children without a parent? How ever shirty the relationship it could be improved but only if their breathing. If it was your partner needing an organ would he be asking the sibling in question to donate. It doesn't hurt to get tested he can still say no even if they are a match and if not nothing they can do anyway but say they tried.

There is no way that I would donate an organ to my siblings. I cannot stand them and would not feel any remorse or moral obligation. They did absolutely nothing to care for a dying parent. Despite my mother begging them to come to at least see my father before his death, they went on a holiday. He died quite young but they were told how serious his condition was. I used up all of my savings to look after my father for several months and dealt with the enormous physical and emotional strain.

If your not a good match it’s a non issue. I’d do the testing then decide from there.
I’d also be honest with the team regarding your personal issues.

@Flawedperfection your partner needs counselling.
As you were clearly described, it’s not a black and white situation and whatever he does, it needs to sit well with him.

If I was him, I would contact the centre who does the test and ask for counselling around that subject. He needs to explain why and have the opportunity to think about it. You might also need some counselling together once he has taken that decision (because whatever his decision is, it might sit well with you iyswim).

You’ve already looked at all the 8s and outs and haven’t reached a clear conclusion. So having a NEUTRAL third party will help you.

FWIW I think the biggest issue here is his family and the amount of guilt and pressure they are putting into to both of you, aka basically making responsible for the brother’s death if he says NO.
Imo he wouldn’t. I can understand the wish of a parent to do anything to save their child’s life. But they shouod never out any pressure on another of their children (or anyone else) to make such a decision about their body for their sake.

Sounds like DP's sibling's family need to look into altruistic donor chains if they're so adamant they would donate if only they were a match.

It is always possible that some of the other family members who have already been tested may have been positive matches but were "rejected" because of they weren't actually 100% on board. So they have looked willing but weren't actually.

[quote DreamingNow]@Flawedperfection your partner needs counselling.
As you were clearly described, it’s not a black and white situation and whatever he does, it needs to sit well with him.

If I was him, I would contact the centre who does the test and ask for counselling around that subject. He needs to explain why and have the opportunity to think about it. You might also need some counselling together once he has taken that decision (because whatever his decision is, it might sit well with you iyswim).

You’ve already looked at all the 8s and outs and haven’t reached a clear conclusion. So having a NEUTRAL third party will help you.

FWIW I think the biggest issue here is his family and the amount of guilt and pressure they are putting into to both of you, aka basically making responsible for the brother’s death if he says NO.
Imo he wouldn’t. I can understand the wish of a parent to do anything to save their child’s life. But they shouod never out any pressure on another of their children (or anyone else) to make such a decision about their body for their sake.[/quote]
Why does he need counselling? He doesn't want to do it! His family are being shit, he's not close to them, they'r pressuring him and they've made it clear they won't help him if it goes tits up. He needs to find a way to tell them NO not bloody ins and outs and getting tested. He needs a backbone and quite honestly, to get away from these people. They have no right to put any pressure on him.

'I'm diabetic. I can't donate.' The end.

@FortniteBoysMum

I know all about low contact. I have not seen bio father in 30 years. Most of family I have not seen in 17 years but look at it another way. Could you leave those children without a parent? How ever shirty the relationship it could be improved but only if their breathing. If it was your partner needing an organ would he be asking the sibling in question to donate. It doesn't hurt to get tested he can still say no even if they are a match and if not nothing they can do anyway but say they tried.

What a sick guilt trip! That's honestly a disgusting thing to say. He doesn't want to do it, he doesn't need a reason. This does not make him a bad person.

YANBU, however, if the brother dies for a lack of a kidney, could your partner live with that?

I think in his shoes I’d do it, because I’d rather risk being financially screwed than risk the self-hatred of knowing I could have saved my brother’s life but chose not to and now my niece/nephews are fatherless.

You never know- he may not even be a match.

And hamster, that is not a guilt trip, it’s a genuine consideration. I don’t think the words “bad person” have been uttered. It’s just a case of what people can live with. Rocks and hard places. Sometimes there are no easy answers. You just have to be able to live with your choice.

@Namechangedandoverwhelmed

And hamster, that is not a guilt trip, it’s a genuine consideration. I don’t think the words “bad person” have been uttered. It’s just a case of what people can live with. Rocks and hard places. Sometimes there are no easy answers. You just have to be able to live with your choice.

It IS a guilt trip! It's the disease that's made the brother ill. He dies and it's the disease's fault, not anyone or anything else making his kids fatherless and all that other emotive talk. The juxtaposition that the OP's partner in some way killed his brother or was in any way responsible for his death and 'has to live with it'. Good god, he doesn't want to do it. And he could be financially screwed forever if it went wrong or worse. It's his body and his saying NO is all that's needed. He doesn't want to do it. So don't even get tested. Un-fucking-believable some peoples' mentality around other peoples' bodies when it comes to situations like this.

Guilt tripping someone is fucking awful.

@Namechangedandoverwhelmed

YANBU, however, if the brother dies for a lack of a kidney, could your partner live with that?

I think in his shoes I’d do it, because I’d rather risk being financially screwed than risk the self-hatred of knowing I could have saved my brother’s life but chose not to and now my niece/nephews are fatherless.

You never know- he may not even be a match.

It’s nowhere near that simple, though, and the donor has to factor in a complex surgery that could mean three months off work, ongoing pain or complications, difficulty in getting subsequent health insurance with one kidney and possible post-donation health problems, post-operative depression (quite common), changed family dynamics, especially if the donor felt pressured, and/or feels the recipient now ‘owes’ him or her a better relationship than before, the possibility of the kidney being rejected and the recipient returning to dialysis etc etc.

I would say that in the circumstances the OP describes — pressure from family, the OP’s partner being estranged from the brother he would be donating to, the OP and her partner being much poorer than the potential recipient and his family, with no job security or owned property, and the family idea that the OP’s partner (no kids) should donate to his brother because he has kids — that the chances of it getting very messy indeed would be high.

Just take the financial side of things alone — if there is a big financial gulf between the donor and recipient, and donor is unlikely to be able to fund recovery time off work, should the recipient brother fund this, pay his rent during recovery, pay for private healthcare to deal with any associated complications? Would the donor ask for any of this, or expect the recipient to offer? Would either of them expect or want their relationship to change?

It's a huge decision and completely inappropriate anyone to feel pushed into it.

We know people where one of the couple was a very, very healthy young parent and donated to a parent but it went horribly wrong. The donor very nearly died (and I don't say that lightly), ended up on dialysis and needed a transplant. The recipient was fine. The donor in that case was incredibly unlucky of course but it does happen.

The problem is that I'm guessing your OH ideally wants to be tested and found not to be a match rather than be a match but not want to go ahead.

It's a personal decision and not for anyone else to judge. People do judge but all our relationships are different.

I don't think the finances matter though. The way you mentioned them in your OP, I wondered whether you were suggesting the brother / family should give your DP some money if he donated the kidney.

Maybe get tested and then make a decision.

But it sounds to me like the decision is made and you are understandably not happy about feeling under pressure.