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Original poster

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.

What?

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:
Ilovemylabrador · 30/05/2019 17:58

Depends he might know more than you. I would happily give you a kidney or anyone else but my parents wouldn’t accept, if they needed it,just like I wouldn’t accept off my children. He might have diagnosed conditions he isn’t disclosing or have made his peace a long time ago.

Picklypickles · 30/05/2019 17:59

I can see where your friend is coming from. Having lost a kidney myself I would be reluctant to take one from a friend/family member, its not a little operation at all, its huge and I'm still in pain 3 years on. I'm reasonably healthy now but I'm always thinking about the fact I'm a kidney down and have to be very careful. I have to have yearly kidney function tests, there's a whole bunch of stuff I'm not supposed to do now. Its a huge thing for someone to do for you, imagine the guilt he would feel if anything went wrong or you went on to have problems after the surgery.

Original poster
Waytooearly · 30/05/2019 18:01

Hi wildorchidz, no they didn't discuss his case with me. As I say, quite rightly! The whole thing made me think, 'Whoa I need to back off.'

At least his attitude was, 'I knew you'd do that, I'd have done the same thing'.

Talking here is helping me see that I am getting into 'helping/saving' mode because it's a way of avoiding the fact that my lovely friend may be dying. There's no magic cure.

OP posts:

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Original poster
Waytooearly · 30/05/2019 18:09

Thank you Clash for sharing. May I ask, how is he now?

Pickly, thank you for sharing. I have never spoken with anyone who has actually donated. My friend clearly has a point: there isn't much info out there about the downsides. Presumably once a person gets into the counselling /testing phase, there are franker conversations to be had, but I didn't get that far.

OP posts:
Notashandyta · 30/05/2019 18:11

Betty- sorry, but you sound like the unpleasant one.

Sorry op, no words of wisdom from me but you sound like a good friend who has done their best under the circumstances. Let your friend lead the way now

maggienolia · 30/05/2019 18:20

Unfortunately as he has capacity, he can make his own decisions OP.
You sound like a good friend who just wants things to be ok again.
For now though, take a step back and just be there for him when he needs you. Maybe offer lifts etc and be a shoulder for him.

missminagrindlay · 30/05/2019 18:23

You need to back off. I wouldn't want a kidney from a live donor, either.

tobee · 30/05/2019 18:24

Honestly @Waytooearly my dh had a cadaver transplant; he's doing very well, and they are much better at matching now and are constantly making improvements.

Let it everyone have time to sink into the reality of dialysis etc.

ClashCityRocker · 30/05/2019 18:24

Waytooearly sadly, he has passed away now. Not due to the kidney failure, although this did play a part...he contracted an infection and various secondary infections and just wasn't strong enough to fight it. Towards the end he also lost a great deal of mental capacity (sudden onset dementia) and would become very agitated and upset, even aggressive, when they tried to put him on so the decision was taken to stop dialysis, which hastened his passing.

However, he was in his fifties when he started dialysis, and I understand that when you start it older, the prognosis is poorer - there were people in his slot who had been having dialysis for near on twenty years and many had adapted their life fine to fit around it.

He was on for five years before passing. In that time, he was able to have holidays (they can have dialysis at any hospital in the UK with the facilities to offer it, with a bit of notice and planning - there are also many holiday resorts in Europe that offer it - even cruises) and for the most part take part in normal family life - so despite the hardship of dialysis, I know he was thankful for it.

Original poster
Waytooearly · 30/05/2019 18:26

Thanks guys.

We're actually driving across country together next week to see a consultant who is the world's leading expert in my friend's rare condition. (At my friend's instigation I hasten to add!!!) So keeping positive and hopeful. Maybe I need to find one of those support groups for carers.

OP posts:
Original poster
Waytooearly · 30/05/2019 18:27

Clash, my condolences. I'm so sorry for your loss. Thank you so much for sharing.

OP posts:
PotteringAlong · 30/05/2019 18:28

I’ve sent you a PM Flowers

Loopytiles · 30/05/2019 18:30

It’s entirely his choice. Kidney donation is a massive deal for the donor and not risk free.

You sound much too emotionally involved to advise him: he has the option to seek information and impartial advice from health services or specialist charities.

Not possible to save people from poor health or death.

Loopytiles · 30/05/2019 18:31

How come you’re his carer?

user1471447924 · 30/05/2019 18:45

Search on Facebook for Kidney Care UK and join their group as a carer. It might give you some insight into the reality of kidney disease. You could encourage your friend to join too. Smile

WMPAGL · 30/05/2019 18:52

I'm not sure I'm very helpful but just wanted to say I really feel for you both.

I think I'd feel the same as your friend, to be honest, and I'm not sure I could accept an offer like that unless I had small dependent children or similar.

In many ways it's easier to give than to receive (more so, the more generous the gift, strangely) and it creates such a huge obligation even when that's not the donor's intention.

HairyPotter · 30/05/2019 18:57

This could be me in a few months. I will need a transplant over the next year or so and feel exactly the same about asking friends/relatives to donate a kidney. I would be terrified that they would suffer complications or especially in the case of my children, need a kidney themselves (as my condition is hereditary)

I also understand how you feel and I know I would want to donate if the situation was reversed. The is no easy answer and he may well change his mind but until then, let it go. Hopefully a cadaver organ will become available.

Itwouldtakemuchmorethanthis · 30/05/2019 18:58

It would be very hard for him if you changed your mind and he had been very keen, and very hard for you to do so.

Original poster
Waytooearly · 30/05/2019 18:59

I'm so sorry you're dealing with this Hairy.

OP posts:
Original poster
Waytooearly · 30/05/2019 19:06

His sister is his carer. I and other friends bring shopping, cook and clean, take him to the park. We have a loose rota. He does ask for help when he needs it.

OP posts:
pisspawpatrol · 30/05/2019 19:20

He has bodily autonomy and if that means you have to sit back and watch him suffer because he is making his own medical choices, then sorry but you have to do it. The long and short of it is, you've told him you will willingly donate and he has said no so you have to respect that.

This is the kidney equivalent of telling a woman she'll change her mind about having kids. Totally out of order tbh.

Snog · 30/05/2019 19:21

My dad had kidney failure and I immediately offered my kidney but my dad sadly wasn't judged suitable for a transplant. Not everybody is - could this be the situation with your friend?

His life on dialysis was frankly miserable. I hope it's not the same for everyone but it's no way to live from what I have seen. You need to limit your fluid intake to a ridiculous extent, then whilst on dialysis my dad would get terrible cramps and afterwards feel like he had the worst hangover ever. It's not in common for people to just feel like it's not worth carrying on because dialysis quality of life can be so poor.

I think joining a careers/ friends support group is a great idea as the situation is a really tough one Thanks

Original poster
Waytooearly · 30/05/2019 19:23

Okay... Except people don't actually die from not having kids Grin But seriously I do take your point about privilege and autonomy.

OP posts:
Original poster
Waytooearly · 30/05/2019 19:26

Oh snog, I'm so sorry, that sounds terrible.

My friend's consultants were actually encouraging him to consider donation and I think he is finally conceding to go on the wait list for a cadaver one.

Who knows, maybe dialysis will change his mind, maybe not.

OP posts:
Poshjock · 30/05/2019 20:16

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

It doesn’t work like that in live donation. The donor has to initiate contact with the team to minimise the possibility of coercion. The donor has as much right to privacy, confidentiality and autonomy as the patient. As soon as the patient made his wishes known the live donor team dropped contact.

I don’t think many people can understand the minefield of emotion involved in live donor, especially when your donor is know to you. DH had a kidney from his Dsis 25 yrs ago and it hasn’t been easy. They didn’t talk for some years. He still feels a bit awkward at times about it. Especially now it has failed.

He initially didn’t want live donor from a friend/family and was happier at the prospect of the three-way match. It hasn’t worked out unfortunately. We had no shortage of offers either. One friend found out he had other health issues during the testing phase. Another discovered his daughter has PKD and rightly wishes to keep his kidney for her. Anoth has found out his DB has kidney disease. DSS pulled out with cold feet (understandable), DSD is a perfect match but DH refuses her kidney he thinks she’s too young. I got quite far down the process but the team turned me down as they don’t think my kidney would last into my old age on its own. Taking no chances. It’s been an emotional rollercoaster and you can understand why it’s easy to take that position right off the table from the get go.

PD didn’t work out for DH this time. It did last time for 18 months before transplant but this time after 2 years and two bouts of peritonitis he had to go HD. It’s a tough regime but health wise he’s in better shape than he’s been in years. He’s off all meds now (apart from digestive aids) his BP is super and he feels more energetic. Cramps can be a problem. He picks up every virus going. He’s ok for fluid restriction it really doesn’t bother him. He’s self cannulating now so has positive body autonomy. It’s not been easy getting here but right now he (and consequently us) is in a good place.

You’ve done nothing wrong. Your friend knows that and although he doesn’t want it, he knows what you were prepared to do for him and he’ll appreciate that for what it is. You’ve no idea the number of people that have said they want to donate a kidney to DH but have not actually put themselves forward. We don’t in anyway expect them to -it’s a huge thing. But we really do appreciate those who did. Even though it didn’t work out in the end.

Practical stuff is always useful, learn what foods he can and can’t eat so you can help keep him fed - that can be hard to do sometimes. Help with transportation there are always plenty appointments to attend Listen when he needs to rant about how crap it all is or regale you with stories about his “inmates” and watch out for the blues. It’s a long hard and sometimes bleak looking road at times. Not always though. Good friends help to make the journey a little less grey.