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.

OP,
This was me a while back. I posted on MN about it. In my case it was my MIL who was on my case about FIL.

Living donor teams are trained to sniff out even the slightest hint of pressure, which they will do a mile off. Any live organ donation has to be entirely voluntary and there is A Process to follow. Including multiple appointments. Live donor teams will happily tell someone that you're ineligible to donate if you ask them to- without you having to go through testing beforehand.

I was gearing up for this but in my case it wasn't needed in the end. Turns out MIL was misleading a lot of people about a lot of things. Including the fact she was enabling FIL's alcoholism. FIL never got his transplant as he died instead.

She says she doesn't want to, and she has DC herself who she'll need to prioritise. So that sounds pretty clear to me.

Especially as OP isn't yet sure what the condition is. While she says they have diverse ethnic backgrounds, she won't yet know if the condition is something that her DC are at higher risk of.

About how to best navigate the family politics of refusing.

She’s been clear that she’s not interested in donating.

You don't think you might be concerned about your own DC in this situation then? Especially as OP doesn't know what the condition is or whether it's something that could run in the family?

what’s the dilemma then?

Navigating family pressure.

BTW I totally understand not wanting your children to be asked to donate. Mine are in that position right now (a relative needs a kidney) and I really don't want them to do it... and that's speaking as someone who has donated and had a totally uncomplicated experience.

If they do decide to do it I'll support them, but there's something very elemental about wanting to protect your offspring even when they are adults.

The dilemma is in figuring out the best way to go about refusing. Fucking hell, it’s all right there in the OP.

I’m unsure as to what the point is in saying you don’t understand someone else’s mindset if you’re not either trying to assert yourself as somehow morally superior, or trying to apply emotional blackmail.

it’s like coming in to say ‘I like dogs’ - okay, and?

Hiya, hope this is useful. My brother needed a kidney transplant and we all got initially tested, only my sister was a match - the screening process is extensive and any hint that you are reluctant will mean you are not considered.

But crucially, my brother was in his early twenties - he is likely to need a number of kidneys as they only last about 15 years - his consultant said he was better off going on the donor list while he was young because he would be higher up the list and rely on a living donor when he was older.

Hope that's helpful

just say no if you don't want to do this (I say this as someone with kidney failure)
there is a donation waiting list for organs which are predominantly from deceased patients.

if there are no suitable live donors, the child will go straight on the list and then get priority due to age. if the child is Caucasian and doesnt have an uncommon blood type, will probably get a match without too long a wait.

in the meantime they will be started on dialysis when they reach the stage of needing it. it is very difficult, but kidney failure is not uncommon and most do well for many years on dialysis.

I think it is better if you are honest and be upfront now so as not to raise their expectations.

You can contact the donation team and ask various questions. They are really helpful and do not push you at all. They actually do a quick screening over the phone when you first ring up, things such as weight and some medical conditions that straight off mean you wouldn't be able to be a donor. It's a massive decision and one that only you can make. We had to do the same for my sibling. She never pressured any of us to do it and never put anyone under pressure. I can understand your sibling being desperate, I really can but ultimately this is a huge life decision and she needs to respect that.

‘I’m going to fall out with (extended) family members for my views’

is reading comprehension usually something you struggle with?

OP isn’t interested. I’m not sure why you think ‘I don’t want to help’, and ‘I know I wouldn’t donate or encourage my children to do so’ are open to interpretation.

How have you missed this OP, when you say

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.

It's really easy to say this on an anonymous forum when you're not actually in the position IRL. Much like the "I'd never let a relative go onto care" posts.

In reality, it's major surgery, not donating blood or even bone marrow. OP isn't suitable due to her own health. I don't think I would be asking my children to donate a kidney to a cousin they hardly know.

Families can be very complicated.

You do realise this isn’t just a small operation, if anything happened to OP she’s leave her kids motherless. It’s not as easy as just jumping at the chance, when you’ve got kids it’s not that simple.

Wow. There isn’t anything I wouldn’t do within my power to save the life of my siblings child.
and as for your statement that you wouldn’t put your sibling in such a position- 🙄 🤥 .
of course you would do anything you could to save your child, I hardly think you’d sacrifice your child’s chances to save your sibling any discomfort, since you don’t seem to care about your sibling in the least.

Totally agree. What if, in the future, the OP finds she has issues with her one remaining kidney - were she to donate one - and that if she had kept both of them her life would be saved? Or what if one of her own children need a kidney in the future and she could have helped?

My FIL is on the list for a kidney transplant. Many members of the family, my husband included, have offered to get tested but he won’t hear of it.

Donation of something as vital as a body part should be entirely voluntary.

I don’t think anyone is being unreasonable here really, it’s just an unfortunate situation.

Your sibling isn’t being unreasonable to ask the question, I can’t think of a single thing I wouldn’t do/ask if it was to potentially save the life of my child.

You are not unreasonable for not wanting to proceed out of worry for your own children and their health.