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.

I’d do it for my own DCs in a heartbeat. For someone else’s? Especially with a difficult relationship? No. We have a difficult (non existent) relationship with my SILs. No way would I give up a kidney for one of their children, as I need to make sure I’m here for mine. I fully appreciate why she’s asking all
potential donors, of course you would. I feel for her completely. But I’m glad you don’t feel pressured into doing it. Agree with PPs that it may be politic to allow the clinic to decline on your behalf.

Can live for years on dialysis it's not immediate death

Your DC are just young adults, I wouldn't mention it to them, too risky for them to donate in my opinion.
Just to share a positive story, I have a family member who received a kidney in his mid-teens from his mum and he is now in his 50s (same kidney) and she is in her 80s. I suspect the closer the relative the more likely it is to last.

That's excellent

Before I had my son, I would have done this for my niece/nephew without a second thought. As a single mother to a 13 y.o, I would think twice.

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)

Are they expecting your children to be tested too to see if they are a match?
There's no way in hell I'd even mention it to them. They have no relationship as such with their cousins or with their aunty.
This pressure and all these messages is really out of order. I get that your sister is desperate, it must be a horrible situation, but you can't force someone or emotionally blackmail them into donating a kidney.

If you don't want to donate a kidney, don't. That's it. It's your decision.
And never mind all these people on here saying they'd do it in a heartbeat. That's their decision. And it's easy enough to say sitting behind a computer and not having to face any of the consequences of having to make such a decision.

its a difficult life though (close person experience)

I wouldn't let any of my children be guilted into this, not would I put my children's mother (me) at risk for this.
Absolutely no. Even if I had a good relationship with a sibling it would be appalling for them to expect this from us.

A relative (not blood) has been asked to donate a kidney to a parent (in 70s) to save her from dialysis long term. She has children and she refused to put her own health at risk for her parent. I don't think that was hardhearted.

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'm afraid I'd strongly object to this; their desperation is understandable, as is asking, but I really don't feel this is a situation where folk should be pressured

As PPs have said the team are used to this and wouldn't allow you to go ahead unless you were fully on board, so you can say in perfect honesty that you're not a suitable donor with no need to take up NHS time at all

And on another note I'm surprised the thread is still here; for some reason HQ almost always delete threads on this subject, though I've never understood why

We had a similar situation in our family and it's very challenging. You shouldn't feel pressured into testing/donating and only you know the full circumstances of your family relationship.

In our family DSIL needed a kidney. DH and DSis2 couldn't donate because of ongoing cancer treatment, I'm not a blood relative (and didn't want to test tbh) and our DC were under 18. Nobody in the rest of the family who did test was a suitable match.

I know donors undergo a lot of rigorous medical and psych evaluations before donation - as it's a big op. In the end BIL donated his kidney to a "medical domino" organised by the transplant team/service where his healthy kidney went to a suitable recipient and in return DSis1 received one from a suitable donor. After the op to donate he was quite poorly, but both doing well now.

My DH had a transplant before I met him. He rejected his family being tested and waited longer for one from a deceased person. His reasons were that he didn't want to feel like he owed his family for anything. Live transplants also come with risks for the donating person and he couldn't bear that happening. He will probably need another in the future and we will have to cross that bridge again. I wouldn't be acceptable even if we matched as I've had cancer. I wouldn't expect our children or his family to either.

If you don't want to then just give them the hard no. I'd also mention about the risks to you and who would care for your children should the worst happen. Yes its no doubt terrifying for the teens parents but there is a much wider position that they aren't seeing.

I understand where OP is coming from, I get everyone supporting them but god I feel for people needing the kidneys. It's one thing if you don't have a relationship with the requester but reading some of these posts makes me feel incredibly sad for the people who've been refused.

Fucking hell

It is not without risk to the living donor and is not something that should be undertaken under duress. So given the issues the OP outlined, not heartless at all.

I'm a kidney transplant recipient and whilst the transplant service said my best and fastest route would be to ask family members if they would think about being potentially matched I was very aware that it's such a big ask and didn't want to put that on anyone close to me. My other half, parents and brother went for it anyway, no match, my brother said he would ask his older children (19 and 22) but I declined based on the fact that they are starting out in life both professionally and personally and I wouldn't want them to go through the process should they have been a match, you don't know what is around the corner and will hopefully have kids of their own etc. I was 33 at the time and have a 1 and 3 year old now (I'm 38). I spent around 7 months on the transplant list and r cubes the gift at that point, it isn't easy but that's life.

I would personally completely support your choice for all the reasons you gave, it sounds like you are being pressured and that is no help to anyone, the hospital would pick up on this and reject even if a match at one of the many stages, they are so many hurdles in the process for a live donation. I wish you all the best

Fully agree with you. Don’t feel guilty. I wouldn’t do it unless it was my own kids. You never know what can and does go wrong

Thank you for sharing the experience of your family member. It sounds like a positive outcome? I’m glad your relative is doing well now.
I’m interested in the “domino” situation as that’s something DH mentioned that could be offered as a potential route.
The fact that my sibling is asking the wider family to be tested suggests, to me, that neither parent is a suitable donor.
I’m making assumptions as I know nothing other than a donor kidney is needed.

From personal experience being in dialysis for a year it isn't much of a life esp when younger with a life to live, tied to a machine either every night (like me at home for 8 hours every single night) or at a hospital three times a week, putting everything on hold, having to drink very little (almost nothing for some days) watching your friends and loved one enjoy life while you have to say no to many things. Of course there are high points but to say you can live for years whilst correct it's not any sort of life I would wish on anyone.

Can you imagine taking a donation from someone only for them to die of kidney related complications?

You have to ask this question because of the risk of a genetic issue and the psychologocal impact

This.

I'd feel terribly sad but my own children are my priority.

It would be heartbreaking wouldn't it. Imagine the guilt you would feel.

I don’t think it’s wasting NHS time to at least make contact with the service and let them help deliver the message that your family isn’t suitable for donation. They facilitate live donation so they also support families who have issues surrounding that.

If you don’t want to give your sister false hope then you have to tell her now that it’s not going to happen. Wether you tell her it’s because you don’t want to be involved rather than because you can’t be involved is up to you, but personally I think I’d choose the option that didn’t leave my sibling feeling like I don’t care if their child lives or dies.