Donating a Kidney

[KeepingKidney]

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?

Isn't the saying first come first served? Sounds an awful predicament.. Maybe agree as a family to do something for charity to raise awareness of the condition? Then more people might sign up for donating in the future...

That's not a bad idea, I could do some kind of run or something but I don't have a massive social media presence but every little helps.

I'm one of 7 and honestly if I was in this position I wouldn't expect an organ from any one of my siblings. I'd be insanely grateful if they even considered being tested.

Try not to overthink it too much, you're talking about giving an organ, not borrowing a car. The sibling who needs the kidney now takes precedence. The other sibling, when they need the same in future, is blessed to have anyone in the family willing and able to donate. If it doesn't work out dialysis and the donor list is what a majority of people in this position have to do. It's unfortunate but it's one of those situations where there really is no "fair" way of doing it. In a fair world no one would need anyone's kidney!

My husband is at this point and this isn't really how it's done now. Not at our hospital anyway. He's been told to find someone willing to donate, doesn't matter if they're a match or not as you're then put into a pool with others so your donor may be donating to someone they've never met and you might get a kidney from a stranger in the same pool of donors.

They said that dialysis is a last resort for those not able to have a transplant and they like to transplant earlier in the decline of function now. This was just told to us last week.

Do they have the same doctors? Is it possible to get everyone tested now to see who’s a match and what the chances are? If there is only one kidney matching one sibling then it sorts the argument. If not, is one sibling likely to be easier to get a non family match with, antibodies etc? Could you try outside the family for then for a period of time if so?

This sounds really difficult OP, I’m sorry.

Ideally they do but lots of people have a sudden drop in kidney function and find themselves on dialysis. I was on dialysis for almost a year prior to my kidney transplant (deceased donor).

I suppose you are asking if both donors and recipients can be tested and essentially paired up by best match. That might make sense, especially if there are two with one blood type and two with another. I'd talk to the transplant team about it.

I know this is an option but we are being tested to see if we are a match for sibling as the first point of call I think.

We are still waiting for the initial appointment so I could have the wrong end of the stick.

@Bunnyannesummers that is a good idea, I don't know if they have the same doctor but I will certainly ask.

You say you haven’t inherited the condition but are you a carrier? Do you have children?

@Prawncow I have no idea, I assumed that if I don't have it, I can't pass it on but it is a question on my list for the kidney docs when we have the appointment. I do have children and would of course be saving my kidney for them if they had the disease.

@Prawncow this is from the APKD website so I think if I don't have it now then the kids can't inherit it as it says no hidden carriers

The two important points that determine transmission in classical PCKD are:

1. If you have the polycystic gene, you get the disease. There are no hidden carriers, unlike some other inherited diseases;

This condition is in my family. To my knowledge, those who don't inherit it, it stops there. They're not silent carriers. 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. This sounds logical with the numbers OP say have/have not inherited.
OP I really feel for you. One of my parents had a kidney transplant. It was never presumed, or asked, if the sibling would donate. They just automatically went on the transplant list. I imagine it's going to be a very difficult decision to make if anyone is suitable, especially as removing a kidney is quite a big operation to have.

Excellent.

@MermaidEyes Neither of my siblings would ask, in fact they have said they wouldn't expect it but it also hasn't crossed my mind that I wouldn't donate if able.

Getting tested is step one and no decisions have been made but well it just feels like the right thing to do.

I'm sorry your family has this awful disease to deal with too. We didn't even know until our mum died and it came out during the autopsy.

My aunt just happened to be a match for her husband, she donated a kidney to him about ten years ago.

They've both been plagued with health issues since, he has had no quality of life. I would consider it very carefully before you do anything

I'm not sure I'd donate anything given the health implications of it and the fact you have kids. I think when you're childless you're much more in a position to be selfless but regardless of whether your kids will need a kidney or not, they need a healthy mum for as long as possible. As pp I only know one person who did this and they've had awful awful health problems. The same happened to the girl that donated an organ to Selena Gomez, it was her friend I think.
If kidney failure is inevitable I'm confused why they're not on a list now?

The others might never need a kidney, unless they're unwell already?

I have PKD, so do both my siblings, my mum, her 3 siblings, her dad & 3 of his siblings- because of this we are all very conscious of blood pressure, salt intake, alcohol and drinking plenty of water.

My great-aunt had a transplant and lived at least 15yrs, my grandfather had end of life care with dialysis at home (he was riddled with cancer). It IS controllable to a degree, if it's known about- my mum's kidney function is good enough that her consultant has told her that she will very likely never have to dialyse. My brother is having difficulty controlling his blood pressure (which exacerbates the condition).

I post this whenever I see a similar thread. Please check very carefully : we had friends and one (mid 30s at the time) donated a kidney to a parent and very nearly died - think litres of blood and the ambulance service blue-lighting plasma to the hospital. It was only that he was really fit and healthy that he made it.

The recipient was fine but the donor ended up with kidney failure, dialysis and needing a transplant. The op for the donor is, as I understand, more traumatic for the body than for the recipient. There were other circumstances in play and you can probably google and find the details. It's really altruistic of you if you're a match but with children to consider, it's hard.

Why don't you all get tested so you know who matches with who and take the pressure off the one whose kidney is still functioning but going to fail?

It may be worth you asking if the Kidney unit employs a clinical psychologist. It is common for them to have a role in these teams to support families with the emotional impact of these types of decisions. It sounds very difficult to navigate, wishing you the best of luck.

If you've got kids of my your own don't donate your kidneys. Your life with your kids comes first.
I know this isn't what you asked.

I will do lots of research and have lots of questions for the transplant team but from what I have understood so far is that you can live a long and happy life with one kidney? I am sure there are examples where that hasn't been the case but those would be the exception rather than the rule.

My kids are all teens so not small children although of course they would want mum around for a long time to come.

@Foxesandsquirrels They only go on the transplant list when Kidney function gets to about 14% (I might have the % wrong there but there is a required amount) they get ready for dialysis and go on the list at the same time. Sibling 1 is at that point now, sibling 2 is much more private about their illness and I have no idea what their current function is.

It is really a last resort to accept a kidney from a cadavar. They much prefer live donors.
In a strange coincidence, I only have one kidney from birth and my health is absolutely fine or I would have donated without question to immediate family.

My H is at 28% function and they are preparing him to get ready for live donation within the next two years. This is our local hospital though so may differ. I believe its the leading renal centre in the country though.