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Friend about to go on dialysis, doesn't want a kidney donated

56 replies

Waytooearly · 30/05/2019 17:15

This is a weirdly specific issue I know but I could really do with some venting and/or advice.

My friend has stage 5 kidney disease and needs a transplant. He's going on dialysis this week.

They've tried all treatments, nothing has worked.

His sister, anther friend, and I have put ourselves forward as donors. Actually his sister is the least favoured choice because the condition is genetic.

He's told us that he doesn't want a donated kidney. As he puts it, having suffered with the disease himself he couldn't live with the guilt of making someone else unwell. Maybe he'll go on the wait list for a cadaver kidney.


Other friend and I have told him that the testing process for donors is rigorous and they won't take a kidney unless someone is on tip-top health. That a person with one healthy kidney has a perfectly healthy life blah blah.

He's unmoved by it all. Other friend has given up. I had a frank talk with him and told him I wouldn't offer unless I genuinely wanted to, that the discomfort of an operation was nothing compared to watching a friend suffer. I've got savings, can take time off work, all good.

He still just doesn't want to hear it. I don't know if it's something psychological happening with him. All of the other kidney patients I've met would jump at the chance for a donor!

I guess I just need to let it go. I can't force the issue. Anyone else experience anything remotely like this?

OP posts:
ViolentBrutishAndShort · 30/05/2019 17:21

Wait til he has been on dialysis three times a week for N period of time. he will change his mind sure enough!

Waytooearly · 30/05/2019 17:25

He's s unwell now that they've told him he will actually feel better on dialysis (while he lasts).

He has a rash and constant pain and needs help walking to the bathroom. He's at risk of stroke.

I confess I've contacted his consultant directly and said, 'Please just start the testing process now.'

OP posts:
LarkDescending · 30/05/2019 17:27

You are right not to force the issue. Just keep on being the good friend you are being and make it very clear that the offer remains open should he change his mind.

I had a similar conversation with a friend who had liver cancer - in fact as it turned out transplantation was not an option because her cancer was too advanced, but I totally understand the frustration of wanting to help but being unable to.

Waytooearly · 30/05/2019 17:27

And I'm supposed to be like, 'Okay, whatever you think best, I'll just sit here watching you die.'

OP posts:
ChicCroissant · 30/05/2019 17:27

If this is true, it is completely out of order for you to contact his Consultant, OP. It's his decision, even if you don't agree with it.

Itwouldtakemuchmorethanthis · 30/05/2019 17:28

I agree wait till he’s been on a dialysis for a bit. He will probably be very happy to change his mind. Ask again in a few months.

Frenchfancy · 30/05/2019 17:31

His body, his choice. I think I would feel similar in these circumstances.

pessimisticstateofperception · 30/05/2019 17:31

He's in a situation he has no control over, and you're trying to take his remaining decisions away from him. Contacting his consultant, however good your intentions are, was totally out of order.

Waytooearly · 30/05/2019 17:35

Lark, I'm so sorry about your friend.

In my friend's case, a transplant is recommended. When I first contacted his consultant directly, she was like, 'Great, I'll send you the forms!'

Then the next day my friend told me that at his appointment his consultant started talking about donation and me getting tested, and my friend just told them no.

He's not mad at me for contacting the consultant behind his back, he just shook his head and said,' I knew you'd do that.'

But I'm sure that's why the consultant has stopped responding to me. Quite rightly, he's the patient.

I am taking the tone of, 'Okay it's an open offer.' Really what else can I do?

OP posts:
Soola · 30/05/2019 17:36

It’s a deeply personal choice and may be influenced by his religious/not religious beliefs and as such you’re taking it further after the initial conversation is extremely disrespectful.

Yes it’s terribly upsetting for you as you want him to get well but all you will be doing is adding another worry for him as he most likely understands how upset you are.

StrongleBerry · 30/05/2019 17:36

Donating a kidney is not always as easy and uncomplicated as the media paints it. A friend donated a kidney and has been left with life long issues. The person she donated to no longer speaks to her as it's caused issues between them.

It's his choice. He may change his mind and he may not. It's completely understandable that he'd feel conflicted about it, especially as there's always the possibility of rejection and it all being for naught and as in my friend's case the donor suffering complications.

Waytooearly · 30/05/2019 17:39

Thank you pessimistic etc.,that's a good perspective. Yes a person has choices taken away. There's a danger of getting into a bossy mode, which is kind of like making it about me.

OP posts:
tobee · 30/05/2019 17:40

There are other methods of dialysis than just the three times a week in hospital. You can go on peritoneal dialysis which has two methods of treatment. Worth a google to see how it works. It's much more gentle. A cadaver transplant is what most people have. He can change his mind at a later date about being on the list; if he's healthy. It's still early days. People can do well on dialysis for many years if they don't want a transplant for some reason.

Obviously it's lovely so many want to donate for to him and a live donor transplant is best but there are many other ways.

BettysLeftTentacle · 30/05/2019 17:40

You contacted his consultant to undermine his medical decisions?!

Jesus. You wouldn’t be my friend for much longer after that. Why do you think you have the right to take what little control he has over his life away from him? (Not that it will happen, his consultant will think your batshit, get used to speaking to their secretary only from now on)

Okay, whatever you think best, I'll just sit here watching you die.

And yes you absolutely must do this. his body, his life, his choice.

You may think you’re being virtuous but you’re being the complete opposite by pushing this way.

Waytooearly · 30/05/2019 17:40

Thanks you guys, it's a little hard to hear but I needed a little head-wobble.

OP posts:
Wildorchidz · 30/05/2019 17:41

When I first contacted his consultant directly, she was like, 'Great, I'll send you the forms!'

This is quite literally unbelievable.
A medical professional discussed totally confidential information about a patient with a complete random stranger????

BettysLeftTentacle · 30/05/2019 17:44

@Wildorchidz they didn’t though, just listened to what she said and said they’d send forms. Now the patients as said no to transplant in no uncertain terms, the consultant won’t even entertain talking about it with OP, especially as it seems she’s tried to contact them since.

springgreensunshine · 30/05/2019 17:45

It is absolutely his choice. If you push too hard you risk losing a friend.

The only living person I know who donated a kidney to her sister has been left with lifelong medical problems as a result. She is not dying but her quality of life has changed. It has created a very strained situation within the family. The guilt the sister who accepted the kidney feels is enormous and the donor tries hard never to feel resentment but doesn't always succeed.

Your friend might change his mind after dialysis but please don't say any more about it to him. It is his choice. Until you are in his shoes you have no idea how you might feel.

Singlenotsingle · 30/05/2019 17:45

He could opt for CAPD which doesn't compromise a person's lifestyle quite as much. And he could live for several years on dialysis anyway.

Waytooearly · 30/05/2019 17:46

you're batshit--contraction not possessive

I'm glad for the frank advice on watching my friend deal with illness and keeping the focus on his needs. I could do without the creepy insults.

OP posts:
itscallednickingbentcoppers · 30/05/2019 17:50

OP you know when you want to vent about a problem and someone keeps offering solutions and insisting you do as they suggest? That's what you're doing. It's his body. You have to accept this.

Stiffasaboard · 30/05/2019 17:51

You are being controlling and over beating and you need to step back NOW.

Your friend is quite capable of making his own decision and clearly knows more than enough about it to have made an informed decision
Contacting his consultant was an awful thing to do.
I’m sorry to say it but you are coming across as wanting to ‘save’ him and I suspect this may play a part in him saying no to you. Accepting a kidney from a deceased donor does not carry the same emotional connections.

Step back. Don’t mention it again and support him however he feels he wishes to be supported.

BettysLeftTentacle · 30/05/2019 17:52

Yeah thanks for that OP. I actually have 2 degrees, one in English and one medical so know my grammar pretty much inside out. I also have a 1 year old on my lap breastfeeding and kicking my phone as I type on it. Thanks for the patronising input, you sound like a particularly unpleasant person.

You know when you said it sounds like you’re making it all about you? You’ve hit the nail on the head. None of this is about your friend’s needs or wants at all.

Waytooearly · 30/05/2019 17:53

I'm very very grateful to the people posting previously around the downside of kidney donation. I appreciate those are complicated difficult stories and I'm grateful that you shared.

That's one thing he said, when we were talking about it. He said that all of the positive stories are PR, essentially. He said, ''Do you actually know anyone who donated a kidney?' and I had to admit that I don't!

This has really been helpful, thanks.

OP posts:
ClashCityRocker · 30/05/2019 17:54

We were in this position with a close relative. He refused any live donors, even though we all offered to be tested for suitability (both family members and non-family members.)

It's something hard to get your head around, that's for sure, but we just had to make peace with his decision.
Even after the rigmarole of thrice weekly dialysis, which made him feel awful in the immediate aftermath (although better the next day) he was adamant that he didn't want to go down that route.

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