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Original poster

Donating a Kidney

35 replies

KeepingKidney · 19/08/2024 11:48

Name charged for this as its pretty outing...

I am one of 5 siblings, our mum died of Polycystic Kidney Disease when we were kids.

Two of the 5 of us have inherited this condition and the other 3 have not. The 2 that do have the condition will need dialysis and eventually a transplant.

Well the time has come for one of them that transplant is imminent and of course 2 of the siblings that don't have the disease are going to get tested to see if we match and will donate if possible.

However my worry is that leaves the other sibling with only one chance at a sibling match. I think first come first served is the fairest way to do this but I don't want the other sibling to feel like we have just forgotten about them. They don't need a kidney right now but it's pretty inevitable that they will.

Sibling 5 won't be in a position to donate anything to anyone.

Am I massively over thinking this? How would you feel if you were the sibling that will need a kidney, just not yet?

OP posts:
MermaidEyes · 19/08/2024 14:18

The op for the donor is, as I understand, more traumatic for the body than for the recipient.

Yes, this is usually why when someone has a kidney transplant they don't remove the old ones, just add the new one in!

unsync · 19/08/2024 14:19

You need to think hard about being a live donor. It can have a huge impact on your own quality of life. I have a friend with PKD, she needs a transplant and is currently on dialysis. They did the research on live donorship for her husband. They decided that the risk of having two parents in poor health was too high whilst their children were still young. PKD is a horrible disease.

PercyPhelps · 19/08/2024 14:24

Having been through the dialysis and transplant process, you are always asked if there is anyone able to donate but if not, as in my case, you go onto the donor list. It isn’t a ‘last resort’ at all!

The matched donor scheme is only used if the potential donor isn’t a direct match.

Interested in this thread?

Then you might like threads about this subject:

General health
PercyPhelps · 19/08/2024 14:25

unsync · 19/08/2024 14:19

You need to think hard about being a live donor. It can have a huge impact on your own quality of life. I have a friend with PKD, she needs a transplant and is currently on dialysis. They did the research on live donorship for her husband. They decided that the risk of having two parents in poor health was too high whilst their children were still young. PKD is a horrible disease.

Same here. I didn’t want to risk my DCs having two ill parents rather than just the one.

Chewbecca · 19/08/2024 14:27

I think you just have to deal with each situation as it arises. So if you are being asked to consider donating now, you make that decision based on the circumstances you are in right now without worrying too much about future circumstances which may well turn out differently to how you expect.

LoobyDoop2 · 19/08/2024 14:28

As others have said, PKD doesn’t skip a generation- you either have it or you don’t. However, there are different strains of it with different degrees of severity. If the one in your family is one of the milder ones it’s possible people could live a normal lifespan with it with no serious impact to their health, and possibly not even be aware if they weren’t tested.

Donating is a very big deal. I have a relative who did it whose health has never really recovered to the same level it was at before. She’s older, but it definitely took a toll and aged her significantly. And please ignore anyone making silly pronouncements about how they wouldn’t hesitate to donate. Nobody knows until they are actually faced with that decision.

Geosmin · 19/08/2024 15:08

"We were told (many years ago) it's 1in 2. So in a family of 2 children, one will get it, and will pass it on to their children if they have any, one won't, and it stops there."

Would it not be the case that a 1 in 2 chance is a 50% chance and that 50% chance would apply to all children?

I don't see how it works that if one child carried the gene a second child would not carry it.

Surely each child conceived would have a 50% chance of carrying the gene? Perhaps someone with a better grasp of statistics could clarify?

So say for example, in a family of 8 children, with a 50% chance, you might expect 4 of them to carry the gene, but there is the potential for all of them to carry the gene or none of them to carry it. But across a population of children born to parents carrying the gene, overall, around 50% would inherit the gene.

Original poster
KeepingKidney · 19/08/2024 15:45

Geosmin · 19/08/2024 15:08

"We were told (many years ago) it's 1in 2. So in a family of 2 children, one will get it, and will pass it on to their children if they have any, one won't, and it stops there."

Would it not be the case that a 1 in 2 chance is a 50% chance and that 50% chance would apply to all children?

I don't see how it works that if one child carried the gene a second child would not carry it.

Surely each child conceived would have a 50% chance of carrying the gene? Perhaps someone with a better grasp of statistics could clarify?

So say for example, in a family of 8 children, with a 50% chance, you might expect 4 of them to carry the gene, but there is the potential for all of them to carry the gene or none of them to carry it. But across a population of children born to parents carrying the gene, overall, around 50% would inherit the gene.

I think your understanding is right, that's how I would understand it.

OP posts:
Original poster
KeepingKidney · 19/08/2024 15:46

I am very surprised by some of these messages, obviously I haven't spoken with the transplant team yet and I would need to do a lot of research before I made a commitment but I thought it was a pretty low risk thing for the donor.

OP posts:
LittleLittleRex · 19/08/2024 16:40

Geosmin · 19/08/2024 15:08

"We were told (many years ago) it's 1in 2. So in a family of 2 children, one will get it, and will pass it on to their children if they have any, one won't, and it stops there."

Would it not be the case that a 1 in 2 chance is a 50% chance and that 50% chance would apply to all children?

I don't see how it works that if one child carried the gene a second child would not carry it.

Surely each child conceived would have a 50% chance of carrying the gene? Perhaps someone with a better grasp of statistics could clarify?

So say for example, in a family of 8 children, with a 50% chance, you might expect 4 of them to carry the gene, but there is the potential for all of them to carry the gene or none of them to carry it. But across a population of children born to parents carrying the gene, overall, around 50% would inherit the gene.

Your understanding is correct, I think the original statement might just have been a short, lacking nuance, way of saying you don't get carriers.

The status of one child does not influence the probability for any others*, all will have 50% risk at conception.

  • Except identical twins
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