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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think someone isn’t owed an organ from a sibling?

216 replies

NellesVilla · 09/08/2022 19:06

I’ve known a few people- weirdly- that have given/received kidneys from other family members over the years.

I think that it is incredibly kind and selfless to do this for another person in need, but think that there’s so much guilt involved and that one person doesn’t owe a kidney, particularly if the recipient is not their own offspring.

I know 2 x people; basics as follows:-

  • R for recipient and D for donor/possible donor. They are siblings, but not close siblings or even really in touch.
  • R is on dialysis and is hoping to get a new kidney in the next year or so.
  • D- a sibling- not a close sibling, has been cited as a possible match. The parents are not able to donate and are hoping that D will “come good”.
  • D thinks that R should offer the kidney like it’s a sweet and that it’s nothing. Also, that is not needed by R. R also isn’t interested in any sort of relationship with D and is happy to take the organ and run.
  • D is- regardless of the relationship- v sympathetic towards this plight- but couldn’t be less interested in risking their life for someone who doesn’t give a fig about them.
  • Sadly, R has kids. D doesn’t but may do so in the future.
  • Everyone thinks “how nice” it would be for R to help their sibling, but wouldn’t dream of offering themselves- friends, family etc.
  • Lastly the most interesting fact is, that D’s partner-father to the kids- is also not keen on being tested and has made up every excuse/reason under the sun to avoid being so. The partner feels that it would be nice for R to help out their sibling- obviously!!
OP posts:
ipswi · 09/08/2022 23:21

NellesVilla · 09/08/2022 19:43

I think another worry for D- @2bazookas - is that the renal team would only have the best interests of the recipient’s health, wellbeing and outcome. That they would rush everything through for the patient they know and have a bond with. That they almost grab the organ and heroically save R, then to hell with D and their recovery.

I won’t say more as I don’t want to sound like a daft paranoid conspiracy theorist (not that all conspiracy theorists daft!).

As a transplant recipient that is absolutely not the case.

My donor went through various medical tests and also "interviews" to check she fully understood and was 100% happy to go ahead.

On 3 separate occasion the renal team said to my donor (with me not there) that if she wanted to back out at any point they could say it wasn't a viable match, I.e. something had shown up on the most recent test that meant they couldn't go ahead.

In fact the 3rd time was the morning before our transplant surgery. My donor was getting a pre-op assessment and the renal consultant said if she was having any doubts at all, they were duty bound to offer her a "get out" and could say the pre-op bloods showed an issue that prevented it from going ahead

Gingerkittykat · 09/08/2022 23:24

When my dad was put on the kidney transplant risk there was not a hope in hell that I would have donated. I had no contact with him from the age of 17 till my mid thirties so we were not close and his illness was also due to badly controlled type 2 and alcoholism.

It is highly probable my DD will need a transplant in the future. She had kidney failure as a child due to an infection and although she is doing well she has limited kidney function. I would donate to her in a heartbeat.

whumpthereitis · 09/08/2022 23:34

SarahSteedman82 · 09/08/2022 22:44

For those saying the donor often faces issues later in life or that they often are not as healthy later on simply is not true for most cases. Life expectancy is more or less the same, future kidney issues such as dialysis is actually lower in those tested against the general non donor population and donors tend to be healthier than many other people as only healthy people are allowed to donate to start with. Of course sometimes things go wrong but please don't scaremonger by saying things like this.

As for the op whilst I see why people are reacting in this way about the sibling, it is their choice and they have and should only do it if they want to, it's their right and who knows what the future may bring. Hopefully the possible recipient won't have too long a wait on the transplant list. I was on home dialysis for 18 months until I had my transplant.

From the reading I’ve done as a result of this thread, it seems there are no national statistics on the frequency of problems that have occurred as a result of donation.

I’m also wondering how long donors are monitored for following their surgery. I’m seeing 2 years (in the USA), which isn’t enough time to observe any long term complications.

TrashyPanda · 10/08/2022 00:03

whumpthereitis · 09/08/2022 23:34

From the reading I’ve done as a result of this thread, it seems there are no national statistics on the frequency of problems that have occurred as a result of donation.

I’m also wondering how long donors are monitored for following their surgery. I’m seeing 2 years (in the USA), which isn’t enough time to observe any long term complications.

Show quote history

The health risks from donating a kidney are exactly the same as those from having a kidney removed because of injury or disease.

my mother had a kidney removed in the 50s
she lived to nearly 90 and had no further kidney problems.
she even had a baby (me!) after her nephrectomy, something the doctors strongly advised against at the time, due to the size of the scar, which went from navel to spine.

MiauzenKatzenjammer · 10/08/2022 00:31

Perfectly happy to donate all my organs after death, but nobody is getting any while I'm alive.

Tiani4 · 10/08/2022 01:15

* As a transplant recipient that is absolutely not the case.

My donor went through various medical tests and also "interviews" to check she fully understood and was 100% happy to go ahead.

On 3 separate occasion the renal team said to my donor (with me not there) that if she wanted to back out at any point they could say it wasn't a viable match, I.e. something had shown up on the most recent test that meant they couldn't go ahead.

In fact the 3rd time was the morning before our transplant surgery. My donor was getting a pre-op assessment and the renal consultant said if she was having any doubts at all, they were duty bound to offer her a "get out" and could say the pre-op bloods showed an issue that prevented it from going ahead

This ^
Please read this OP ^^

Georgeandzippyzoo · 10/08/2022 01:25

My mum was a nurse and she always said she couldn't understand a living donation, but happy for anyone to have anything after she goes.
As others have said R is going from 0 to 1 so should hopefully improve, D is going from 2 to 1 so could be negative for them.
If you give up a healthy kidney then youre praying that your remaining one stays healthy and working otherwise you're now in trouble. If you have children esp then they are your priority, for you to be there to care for them.
It's a very altruistic thing to do but I agree that a possible D should become under no pressure to say yes!

CrossStitch87 · 10/08/2022 01:29

God I have no idea. I’m really close to my siblings and in principle I wouldn’t hesitate. But now I have children it’s a bit different. What if they need my kidney later? What if I die on the operating table?

it’s a totally impossible choice. I have no idea what I would do.

Penfelyn · 10/08/2022 02:12

Before I had children and when I was more naive I probably would have donated to a sibling or parent (though no one knows for sure until they do).

Now though, I have kids and considering my family's health and habits, some of them I wouldn't trust to take good care of my kidney. I won't donate to someone who can't be arsed to take care of that organ.

I'd donate to my children without a second thought though.

Changechangychange · 10/08/2022 02:33

whumpthereitis · 09/08/2022 23:34

From the reading I’ve done as a result of this thread, it seems there are no national statistics on the frequency of problems that have occurred as a result of donation.

I’m also wondering how long donors are monitored for following their surgery. I’m seeing 2 years (in the USA), which isn’t enough time to observe any long term complications.

Show quote history

There is loads - put “long term outcomes nephrectomy” into pub med. I’ve just found 20 papers relating to long term outcomes for live donors, in reputable journals like NEJM, Lancet, KI and NDT, just from a cursory Google.

It also isn’t major surgery these days - usually keyhole, and donors are typically discharged after 48 hours.

Donors are followed up lifelong (usually an annual review). Probably overkill, as patients who have nephrectomies for other reasons, eg cancer or kidney stones, don’t get that length of follow up.

Obviously it is always the donors’ choice whether to proceed or not, and nobody should feel coerced by their family member, but there is a lot of misinformation in this thread.

StClare101 · 10/08/2022 03:54

I’d do it for my sister as we are very close and also my parents as they are young ish and fit. I’d also do it for my closest friend if a match. Anyone else would get a “no”. The risks are too great and my own family is my priority.

Kitkatcatflap · 10/08/2022 03:56

A friend went through this recently. Husband on dialysis, self inflicted, refusal to take high blood pressure, diabetes seriously, resulting in organ failure.

Two sisters, both shocked he was hospitalised and say they will do what's needed. When my friend (not a match) calls them to arrange testing appointments, they become vague, none committal and eventually say no. My friend is furious with them, calling them liars and accuse them of leaving their brother to die a slow death. She went NC with them, although their brother is still in touch.

I can see both sides, my friend is scared desperate to keep her husband alive but I do understand the sisters - both are parents with spouses have prioritised their own families. Their only crime was to say that they would do whatever was needed. When my friend was raging about them to me - I asked her 'If the situation was reversed and your husband wanted to give a kidney to one of the sisters would you be okay it. She dismissed it, saying it wasn't relevant.

Fraaahnces · 10/08/2022 04:07

I study with someone who was conceived as an attempt to find a compatible organ donor for her much older sibling. She did not have a compatible tissue type and her earliest memories involve hearing this story, constant, long hospital visits where she had to sit and be quiet and her sibling becoming sicker and sicker and eventually passing away. After that, the stories were “What a shame X wasn’t compatible… She could have saved her…” etc.
This girl was a failure to her parents from the time they tested her tissues and she had lived with that hanging over her for all her life. She said that she can’t watch any of those future dystopian movies like Gattaca or The Island because that was her life.

Cadot · 10/08/2022 04:29

WTAF. Surely children can't be live organ donors? How could the possibly consent?

ClottedCreamAndStrawberries · 10/08/2022 07:42

What if the donor gets ill and needs a transplant themselves? This is in no way like ‘giving a sweet’, it’s a HUGE decision. DH and I would give one to each other in a heartbeat but I don’t know that I’d give one to anyone else in all honesty.

Changechangychange · 10/08/2022 07:45

Cadot · 10/08/2022 04:29

WTAF. Surely children can't be live organ donors? How could the possibly consent?

Children as in “offspring”, I assume - adult children. You are right, under 18s cannot be live donors.

Changechangychange · 10/08/2022 07:51

Changechangychange · 10/08/2022 07:45

Children as in “offspring”, I assume - adult children. You are right, under 18s cannot be live donors.

Show quote history

Oh I have just realised which post you were talking about - I think children can donate bone marrow as that regenerates (which I assume is what was needed from @Fraaahnces friend). Not my area so I’m not 100% sure of the rules. But under 18s definitely can’t donate solid organs.

There’s another post on an earlier page, about a child donating a kidney to their parents - in that post, I think they mean “adult child”.

Fraaahnces · 10/08/2022 08:21

@Changechangychange I don’t know the details, tbh. Probably should have asked. I also live in Aus and will check out our regulations about kids donating organs when I finish work.
I know that I was tissue-typed when pregnant just in case my DD2 needed a kidney, but luckily wasn’t the case. (Although I know we are compatible…)

Original poster
NellesVilla · 10/08/2022 08:45

Exactly, @ClottedCreamAndStrawberries - that’s kind of the point! D feels ridiculously guilty for something that’s not their fault/problem and has been told it’s “nothing” to donate. D is concerned about the risk- to both them and R, and about potential future health complications.

It is not like just giving blood, hair or bone marrow. It doesn’t grow back. Always funny how the recipients (and I get that they must be desperate) and people who don’t have to donate are great at offering others’ organs!

OP posts:
Original poster
NellesVilla · 10/08/2022 08:48

I think the saddest thing here- other than the recipients being ill obviously- is that nobody I know irl gives a shit about the donor. I understand the main character here is always the recipient as they need the organ desperately, but that’s where the genuine concern ends.

Maybe I just know a bunch of unfeeling people as I don’t think saying “you’re so selfish” to someone who is terrified of donating and for it to go wrong, is a bad person.

OP posts:
WeAreBob · 10/08/2022 08:54

What is your last paragraph about?

D's partner and father to the kids refuses to get tested but thinks D should donate?

You said neither D not R have kids, so how is D's partner a father to what kids?
D's partner isnt related to R so why would they get tested and give their kidney?

How is this the most interesting part?

There are a lot of errors in your post but this point is beyond understanding.

WeAreBob · 10/08/2022 08:55

*Neither D nor R have kids.

notanothertakeaway · 10/08/2022 08:56

NellesVilla · 09/08/2022 19:43

I think another worry for D- @2bazookas - is that the renal team would only have the best interests of the recipient’s health, wellbeing and outcome. That they would rush everything through for the patient they know and have a bond with. That they almost grab the organ and heroically save R, then to hell with D and their recovery.

I won’t say more as I don’t want to sound like a daft paranoid conspiracy theorist (not that all conspiracy theorists daft!).

I don't think that's the case

A colleague was tested as potential match. Medics told her that if she had any reservations at all, they would determine that her kidney was unsuitable (so she could maintain good relations with family, who would know she had offered but was declined)

mbosnz · 10/08/2022 09:02

I wouldn't give an organ to my siblings, nor would I ask for one of them. As much as anything, we've all got crappy kidneys! So my spare is reserved for my children, if ever needed.

Kath85 · 10/08/2022 09:03

My son is 2 and there is a possibility he may need a kidney transplant while still a child. Whilst me and my husband would jump at the chance to help if we were a match, our son is adopted so this is unlikely to be the case. Our son has no contact with his birth family apart from me sending a yearly letter which they are yet to respond to. As much as I understand his birth family’s rights to refuse and we would accept a no without trying to change their minds etc , I absolutely still intend to ask them to get checked if required. It’s not an easy decision at all and I can’t even imagine the pressure they may feel, however, the desperation I feel about the situation means that we will ask regardless. Living with one kidney whilst isn’t the norm also isn’t particularly rare and doesn’t require ongoing treatment so I pray that if they did donate a kidney they would still live a long healthy life as so many others do. Whilst I appreciate this post sounds very selfish we will do whatever we can to help our son.