effects of kidney failure following decision to decline dialysis

[inghy06]

My mum has only 9% kidney function - it has been suggested she have dialysis, 4 times a day for 30/40 mins (it was thought she would not be suitable for the hospital dialysis of 4hrs three time a week due to other medical complications) - she has asked me what would happen if she decided against this, as her kidney's deteriorate even more will she be in a lot of pain

[Viviola]

Don't know how old your Mum is (not that its of any consequence) but it sounds like they are suggesting peritoneal dialysis. I am not yet in need of dialysis but I have opted for PD when the time comes as I feel it is less intrusive and you're not tied to a hospital for hours at a time. I know renal units can help if she decides against treatment and will do their uptmost to keep her free of pain. I think you and Mum really need to talk to someone in detail about her options - all renal units have counsellors attached to them as well so may be worthwhile seeing one of them. Find out as much information as you can - to decide against treatment is a huge decision and not one to take lightly. I wish you all the very best and hope your Mum finds the best solution for her. x

[inghy06 in reply to Viviola]

thank you very much for your response - we are awaiting an appointment for the renal clinic when I hope to clear a few things up and help mum to make her decision

[NKFT]

I was on Pritoneal dialysis for 4 and a half years by choice and had positive experiences over that time and even did Heamodialyss for 6 months after that before transplantation. All is not lost and the freedom peritoneal dialysis can give you Mum will be a plus in my experience. We are all different as patients and will have different experiences and needs and I am sure with pain management given along with her treatment she will be fine.

[inghy06 in reply to NKFT]

we are hoping she does choose the Pritoneal dialysis but she just keeps asking what the point is when it is not going to cure her - I think she is also concerned about the pressure it will put on family members as she will be unable to carry out the procedure herself.

[Tykess in reply to inghy06]

There is ‘assisted peritoneal dialysis” where someone qualified will come out every day ( including Xmas etc) and they will set up the machine ready for night time when all anyone has to do is connect her to it. This will work overnight so she (or someone from the family) will be able to disconnect her the next morning. They will also clean her site where the tube is. This will mean she has all her day free. Xxx

[pluto94]

Not sure why she was told she would not be able to do haemodialysis , as that is usually the fall back if people are not suitable or have problems with PD . I know i was not suitable for PD therfore had no option apart from haemo . If she is suitable for PD , I would suggest she went for that as less intrusive . My advice for your mum was give it ago , then decide .

[inghy06 in reply to pluto94]

as mum has had a very episodes of forgetfulness, they are concerned she may be in the early stages of dementia and this type of dialysis can speed the process up. She has also had heart surgery (triple bypass) within the last 12months and they have said that this procedure can put quite a bit of pressure on your heart - on top of this she also suffers with diabetes. We do want her to go for the PD but as hard as it is I feel it is important that the decision is hers and as she has capacity we cannot go against her wishes - we will just have to keep talking to her and try and help her make the best decision.

[nikityler]

I have just been reading the 'deciding what to do about established kidney failure' which can be found here sdm.rightcare.nhs.uk/shared... this may be of interest to you and your mother.

[inghy06 in reply to nikityler]

thanks for this, I will print it off and sit and talk to her about with the rest of the family, as this is all new to us all the information we can get is much appreciated.

[nikityler in reply to inghy06]

Your welcome glad to be of help, good luck

[phillen]

my husband has been on CAPD for 2 years very tough at first but used to it now, could your mum try the overnight machine? my husband tried it but didn't like it! also some patients we have talked to at hospital appointments start off on 4 times a day then seem to only need 3 or even 2 times after a few months! not for my husband though still 4 times it is pretty intense but you get used to it, apparently you don't have pain as your kidneys die off this is why they call it the silent killer! i can understand your mums point though my husband can't have a transplant & also has heart problems, he can manage mostly although i have had to do the exchanges on occasions! good luck to you all

[gilders]

I don't know if it's the 4 times a day that's her main concern. If it is, I would imagine that she'd be allowed to do it through the night instead.

As for pain, you're probably best searching for the term "symptoms of kidney failure". You'll find lots of symptoms that will progressively get worse without dialysis.

So medication may be given to help with symptoms, but there's no medication that will directly stop or reverse failing kidney function.