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AIBU to ask if any of you know anything about stage 4 kidney failure?

(16 Posts)
jobergamot Sat 04-Nov-17 18:14:39

My mum (68) has this, an eFGR of 16 if that means anything to you. She also smokes 30 a day. Heart failure, diabetes to boot. She is refusing dialysis.

How long is she likely to live, would anyone hazard a guess?

She's a narcissist, I've had a very difficult r/ship with her for years but wonder if I need to make my peace with her pronto?

DJBaggySmalls Sat 04-Nov-17 18:39:22

Yes, its time to make your peace as best you can. She cant survive if she refuses dialysis, but no one can force her to.
How long she has left depends on how ill she is, she may have 2 weeks or so left. Has she mentioned an advance directive, or asked you to act on her behalf?

Do you have any support? flowers

www.kidney.org/sites/default/files/11-10-0330_ifyouchoose.pdf

PinkSparklyPussyCat Sat 04-Nov-17 18:55:32

Yes, it’s time to make your peace. My Mum was diagnosed with heart failure which led to kidney failure and she went downhill very quickly.

Thinking of you and hoping you’ve got support in real life flowers

jobergamot Sat 04-Nov-17 19:08:00

No talk of any advanced directive. I don't really know what that means?

She says she feels 'absolutely fine' but was called urgently into A&E the other night with very high potassium levels after routine blood tests.

I only know all this because I read the copied letters from the nephrology follow up. She looks ok to me, she's become increasingly infirm over the last few months but reckons she's now aiming for her 70th b'day (18 months)... I just fear that she will become really decrepit and need a lot of actual care. I will do my bit, as I would for an elderly neighbour or something... but because I feel so little actual love/care for her, it feels really weird. I guess she could go on for years, I've done a bit of googling myself.

Support? I start CBT next week to look at my childhood trauma, much connected to her.... ironic hey?

Eslteacher06 Sat 04-Nov-17 19:54:56

My dad felt absolutely fine a week or so before he died. He had stage 4 renal failure as a complication of cancer. Eventually he became very confused and I couldn't have a normal conversation with him and that was very hard to see.

I had a hard relationship with him but we made peace with each other before he died. He only died last month and it still doesn't feel real but I am so so grateful I had the chance to have that difficult conversation as I would be an absolute wreck now if he had gone suddenly with no resolution. Death is so final and that only becomes really apparent once they've gone. It was his birthday in September and I wrote how I felt in a card (positive things as by that point...why have an arguement?) because I knew I couldn't say it out loud. Maybe you could try that? He cried. I had never seen him cry before.

She may not react like that-especially if she doesn't think she's dying. But at least you tried. Take care and please look into bereavement counselling. I'm doing it now and it's bringing stuff up I never knew was there ..but I'm feeling better.

Gingernaut Sat 04-Nov-17 20:06:20

Based on Canadian life expectancy charts, A woman of 68 with an eGFR of 15-29, might see 69, however, this does assume all treatment available is taken. Without dialysis it might be up to a year, but she'll be increasingly frail and confused.

ginnybag Sat 04-Nov-17 20:26:05

I wouldn't assume anything. I have a co-worker in kidney failure. His eGFR has been hovering around the 15-16 Mark for the last three years.

One result does not a death sentence make, and if she's not symptomatic I can see sense in her decision.

If the number keeps slipping and she develops symptoms then it's a different game.

Sparklemummyx0x0x Sat 04-Nov-17 20:26:31

I think dialysis needs to be discussed seriously with her. She isn’t quite at that stage but she needs to know the risks of declining, of choosing palliative care instead for when she definitely needs it to survive. If her diabetes and heart failure has been a direct cause to leading up to CKD then the risk of her CKD deterioration is greater.

But, dialysis is hard, it’s tough on the body and mind. She’s got to have some sort of quality of life and the mindset to want to make the most of the years she has left. People live for years on it, some don’t tolerate it at all. Depending on the type of dialysis, it’s bloody tough to manage day in day out.
But it’s her choice, as long as she is aware of the options she has. I really hope you can both resolve this.

dinosaursandtea Sat 04-Nov-17 21:26:15

If she’s refusing treatment, she’s going to die a lot sooner rather than later. If you want to make your peace then do it - but make sure this isn’t just her way of manipulating you.

Athome77 Sat 04-Nov-17 21:39:02

In England it’s not advanced directive (so don’t ask about it as no one will know what your talking about), has she made anyone power of attorney or has she expressed how she wants to be cared for? Her go can do a right care plan and DNR (do not resuscitate) form with her?

justilou1 Sat 04-Nov-17 21:43:39

My mum was a narcissist who died just before Christmas. You may not get the chance to make peace with her. I can tell you that the dying process was probably the happiest time of my mother's life - she got to be horrible to those who were doing everything for her, she had a lot of attention and knowing she was going to be meeting her maker very soon did not make her a nicer person at all - in fact, her narcissistic traits were stronger than ever. Just manage your own expectations first. You could be in for a long and painful ride.

JoBlogs Sat 04-Nov-17 21:45:37

My narc DM had Stage 4 kidney failure for at least 10 years. The drugs around now can keep it in abeyance for donkeys, or so it seems. It didn't kill her; her dementia did - eventually everything gave up.

TweeBee Sat 04-Nov-17 21:52:34

I'm a health professional working in renal. She wouldn't need dialysis yet with a eGFR at that level. The high potassium is worrying but may well be medically managed with changes to meds and diet.
Very difficult to say how long her GFR would take to drop to around 10, which is typically when we would want people to be certain of their plans, though people don't always need dialysis at that stage, can get down to 4 or 5 though that's not common.
Dialysis can be tough as PP have said and isn't the best for everyone, but there are lots of different types - not all in hospital. Definitely worth encouraging her to speak to her team about education. She needs to be making an informed decision whichever option she picks.
Hope this helps op.

PerfectParisian Sat 04-Nov-17 21:53:46

flowers

GrowThroughWhatYouGoThrough Sat 04-Nov-17 22:18:38

Potassium levels can be wrong. My mum is a transplant patient and the amount of times she’s been called back because of potassium is silly. The results are time sensitive so if not processed in the correct time can give a false reading. Has she been re tested?

jobergamot Sun 05-Nov-17 09:19:36

Thanks everyone for replies. justilou your post really struck me; my mum asked me yesterday 'are you gonna donate me your kidney then?' in a really sort of nasty way... as if it's my fault she has this problem... it didn't really register with me at the time but yoIur post made me see it differently.

To be honest, I am frightened that the medics might be able to prolong her life for many more years and its quality not be that good.... and then I will get the brunt of her bitterness about her situation (widowed, lonely, can't go out much, not at all independently). Pretty depressing thought.

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