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.

Absolutely, screening costs money and no one should be wasting NHS time and resources. Taking unnecessary appointments for screening reduces the resources available to screen those who can and want to donate.

Using the NHS to virtue signal is incredibly selfish.

I can’t comment on the moral side of your decision , but I can offer some personal and general extra facts.

A kidney transplant, especially in a young person, is not a life saver, it is a life prolonger. Nearly a quarter of transplants fail in the first three years ( putting together data from several countries, and of course there is always the possibility of improved procedures). It is very unusual for a transplant to last as long as fifteen years, and successive transplants, if appropriate, seem to decay more quickly.

I have known three people ( adults) who received a transplant. The first failed after seven years, and the patient died . The second was seriously impacted in other ways by the operation ( although would have died without it) and contracted sepsis about eight months later. Possibly unconnected, though the medical staff seemed …unsurprised. The third was successful, but unfortunately suffered a stroke during the operation which left them intellectually impaired.

I also knew someone who decided to donate a kidney altruistically, not to a known family member. His family were very dubious but ultimately supportive. He reacted very poorly to the operation and its aftermath, he went from an extremely active and witty man to a pale semi invalid. It caused a lot of tension in his marriage.

So it is not as clear cut as just ‘ denying life’ to anyone.

Everyone on the thread who "can't imagine" not helping out are you on the bone marrow transplant list? Helps someone out could save their life doesn't cost you a kidney

You can't understand until you'll be asked to do it.
Transplant is not a joke. It's super serious surgery for both sides. Life with one kidney is very risky.
I personally know a lady who died after complications.

Thank you for this perspective.
I think I did want to avoid wasting the time and expertise of the donor coordinator but also avoid any further stress or conflict.
I will make it clear that I’m an unsuitable donor to shut down any requests for testing.

I assure you that if your child was dying and needed a transplant you absolutely would contact your family

Your children are adults. Tell them you've has the text and if they would like to be tested for potential donation they can but there is no pressure to do so

I would be mad as hell if my mum was making decisions like thar for adult me on my behalf

Personally, I would go through the donor team to say you're not a suitable match. It just ties everything up nicely. It keeps you out of the deeper issues at play.

I wouldn't discuss it with your children as frankly, it's not their responsibility to do this. They are all adults and currently unavailable/unsuitable due to being abroad, health conditions, or recovering from injury.

This is a serious surgery, and there can be lifelong complications if something doesn't go to plan. The risk is too high for you in this case. I would rather save my kidneys for the unlikely event that one of children may need one.

Also, getting a negative match is more common than finding a match. I believe, even within families.

Conversely, a lot of people go on to enjoy full and healthy lives after kidney transplants. It can be a miracle treatment. Living donations tend to last longer than those taken after death.

Op absolutely shouldn't feel pressure but please don't talk down the wonders of a kidney transplant! The teenager in question could easily have a natural lifespan ahead.

I believe that you can contact the donation service and advise that you are being pressured/coerced and won’t be participating.
*They wouldn’t accept any donation if they believed that this was happening.

While I get DHs stance, I think I'd tell the DC because there's a potential risk of Dsis contacting them herself. I know you say they're not in touch OP, but I bet it wouldn't be hard for her to find them on social media. Better that it comes from you.

My understanding is that 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

This is mine too. NHS is VERY rightly strict about informed consent and if there is any doubt or hint of coercion they wont do it. Too right too, otherwise it would lead to a very slippery and dangerous slope in general.

Totally agree. I cannot understand this mindset at all

It doesnt matter one shit if you dont understand it- everyone has the right to have autonomy over their own body and when it comes to removing an organ, informed consent is of utmost importance. Thank goodness.

If you don’t want to help you need to tell your sister this. It’s cruel and pointless giving your sister false hope by starting the process when you already have decided that you and your children are not going to donate.

Thank you for your perspective, I think I remember your post, maybe 5-6 years back?
It’s helpful to know that the donor coordinator team this protective of the donor.
I don’t know any of the circumstances around the need for the transplant. That’s not been shared by my sibling but I can’t think of anything that would make me change my mind. Sorry for your loss too.

I don't think you're heartless. I say this as a severely unwell person myself. There's a risk to surgery, is it guaranteed that everyone is just as fit and healthy after removal of one kidney? Scarring and internal adhesions from surgery in the abdomen are issues that severely impair some people.
You're right to not want to do it especially in light of the difficult relationship

Just to add I do think it's kinder to let them know straight off the bat. But I accept there may be consequences for you in doing so

This is disgusting
Unless it is a parent/sibling/child relationship (and even then there are limitations) she has no right to take it as a given that you would go trough a life changing operation to give up a body part to save HER child.
Her child may be the centre of the universe to her, but that's where it ends. If you offered, this would be welcome, but she can't just assume.
So sorry OP. You are NOT horrible. I would only consider doing this for my mum, husband, daughter or my best friend (and none of them would assume it).

Really useful post. Thank you.
No one should feel coerced into such a major decision. And tbh, i'd be keeping and 'spare' bits I have for my own children, just in case.

Given the you've been low contact, this is a request borne out of desperation. I appreciate that the request is a bit rich given the circs, but when your child is ill, you will do or try anything. So I can understand that the family are pressurinsing you, but thst does NOT mean you have to capitulate.
As the previous pp said, the transplant team can help you say no.
You must not feel guilty. It's so lovely that you've not gone for a definite 'no', particularly given the circs, and that you have asked MN for advice.
But no is a good answer for you

I think your decision is yours to make. But to deny your adult children the ability to make their own informed decision is wrong. Id never forgive my parent if they did that to me.

I can totally understand why your sibling has asked, and I can totally understand you not wanting to get tested.

There seems to be pressure on you and your family to get tested, would this not be frowned upon by the transplant service?

This. They will not slow you to donate unless you are 100% sure you want to.

Thanks for your reply, I admire your generosity in donating. Your recipient is very fortunate. Can I say if I had a relationship with my sibling would I donate? I don’t know but I will never know. Maybe I’m just a horrible person.

It sounds like, from reading others comments, that the donation people have good protocols in place for helping dealing with "no"s.

That being said, what would happen if you just continued to ignore the requests? They can hardly come and drag you and your DCs kicking and screaming into the hospital!

Your DH is right. There is no need/reason to tell your DCs about this request.

Really? You wouldnt put your sister in this position? I think maybe if one of your children was ill you would do what you can to help them.
Its horrible enough that you refuse to help a 14 year old child, but your children are adults and its not up to you or your DH to make that desicion. At least let them know about the situation and let them decide for themselves.

There are three issues here.

The first is whether or not you should offer your own kidney. You don't want to. If it makes any difference at all, it isn't remotely unethical to do this. The risk of death and complications are high.

The second is the potential family rift. Asking the doctor to sign you off as an unsuitable donor will deal with this. Even if everyone does this, you won't be singled out.

The third is your adult children. I think you have to tell them, but explain they are not under the remotest obligation to do this, and you think it's a bad idea.