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.

Could you contact the donation team, and decide you're a NO for the reasons stated above and then tell the family that you've done XYZ but unfortunately aren't a match?

I'm sure this situation happens a lot

This would be my thoughts too.

My understanding is thaf if you tell the doctor you don't want to donate they will tell your sibling that you're not a suitable match without telling them you refused.

Might be your best option to avoid family drama.

Good idea. I bet this happens a lot and lm assuming they have provoked to deal with this

Good on you for not being guilted and intimidated into doing this. It is a MASSIVE ask and their attitude sounds terrible. Before you even get to the back story of what the family dynamics are like

This is from kidney.org:

“Your decision to donate an organ must be completely voluntary and free from pressure. You have the right to decide that donating a kidney is not for you. You can delay or end the donation process at any time. The reasons for your decision will be kept private and confidential by the transplant team.

If necessary, you can ask the transplant team for support in declining donation. For example, if you fear that saying "no" to the recipient would cause your family to be upset or angry with you, you may want to ask the transplant team for support. They can help you develop an appropriate response — or even a medical disclaimer if needed — which would allow you to decline gracefully.”

https://www.kidney.org/transplantation/livingdonors/making-decision-to-donate#:~:text=You%20can%20delay%20or%20end,for%20support%20in%20declining%20donation.

Provoked = protocols

I can't imagine not at least getting tested to potentially save my niece's. I think it's pretty heartless to not at least take the first steps. You can back out at any point.

It's your body.
Nobody has the right to ask for part of it, no matter how ill someone is.
Just tell them that you cannot help.
They will no doubt try to guilt trip and/or bad mouth you but you're perfectly within your rights.

It would be so much harder to back out if you got tested and were a match. So no real point in wasting everyone's time unless you know you want to go through with it.

It's not heartless.

Ring up the team dealing with the screenings and state you do not wish to be a donor and that you want it to be made clear that you are not a suitable match.

Easy. They deal with this all the time. You can them breath a sigh of relief and they think you got tested.

I can't imagine not wanting to help my neice/nephew.
Even if I wasn't close to their mother or father.

I’d rather save my kidneys or any organs for if my own children needed them tbh 🤷🏻‍♀️

Its understandable even if good relationship. Life happens. You could end up donating and having your remaining kidney damaged later, which could kill you and mean you're not around for your kids. Your kids could need a kidney and you would have been a match but already down to one. You could have a bad reaction to the anesthesia and die in surgery.

If you don't want to don't. Tell them you're medically not suitable if you want, tell them none of their business what the underlying medical condition making you ineligible is. Or contact service and tell them they're pressuring you.

Despite the very real risk of leaving your own children without a mother?

What would be the point that of wasting your own and everyone else’s time, and medical resources, when you know full well you’re not going to donate?

Having been through the process of donating a kidney, it really is something you should only do because you want to do it.

It's fine to say no. Most people say no.

I would not say you're getting tested if you have no plans to donate. That's just stringing them along and giving them false hope.

I would not ask the donor coordinators to send the message for you. They're busy dealing with people who really are considering donating.

Just say no, it's too much to ask. There's no need to get drawn into conversation about it.

“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.”

Yes.

Totally agree. I cannot understand this mindset at all.

@whosaidtha

there is NO point (& a lot of expense) to being tested if you're not committed to going through with it.

there are risks to going through with it, it's a big decision. It's all very well to say you'd do it, when you're not actually in that position

Can you understand that everyone has the right to make that decision for themselves, without being pressured one way or the other though?