End stage kidney failure

[GreyhoundzRool]

Hello - I don’t think I’ve started any threads before, and I haven’t been sure whether to start this one as I’m not sure I’m ready for the answers.

Anyway, my mum has end stage kidney failure with an eFGR currently of 10. She is 85 and also has heart failure (she has a pacemaker) but is generally not healthy. She has decided against dialysis.

Any experience of kidney disease out there and how long can she be expected to survive ? I know that’s probably a “how long is a piece of string” question I don’t really want to ask the consultant in her appointments as I don’t think she’d want to know the answer

Thank you

I'm sorry lass. I have no useful words but wanted to send you a handhold. I hope things go as well as they can do.

Thank you Mrs M - I think if I had some idea I could get my head round it

Greyhoundz, my sympathies to you and your mum. My DH had ESRD early this year. His initial kidney disease arose out of chemotherapy (lung cancer) and he did have dialysis for a few months - which brought on heart failure, but was otherwise useful for him. We thought it was behind him but it returned when he started immunotherapy. He was considered too frail for further dialysis. He only lasted a couple of weeks after that. I know this doesn’t sound good, and if you want to know more you should speak to the Treatings doctors because everyone is so differnt and the Drs will know far far more about your mothers health. Again so sorry you have to go though this.

Thank you Kitsch- I’m so sorry about your DH. The Consultants are suitably vague, but have suggested looking into an Advanced Care Directive or similar to detail what mum wants her end of life care to look like, so we are making plans towards the end sadly.

Thank you for answering - you are right in everyone is so different and it does seem to be largely impacted on what other health issues there are rather than the kidney disease itself.

Best wishes to you

Hi @GreyhoundzRool , this may be a little late and you may now not be looking at this post but just wanted to give my view and background.

I'm 37 and was diagnosed with kidney failure out of nowhere age 34. When diagnosed I had egfr of 21. Within 18 months I was at egfr 7 and on peritoneal dialysis. Now, this sounds scary but to reiterate everyone else's point, each case is different! I have a friend I made through hospital visits who was at egfr14 ten years ago and is only now just needing dialysis. I was lucky enough to have a live transplant from a friend last year and am recovering slowly.

Whilst your mum has said no to dialysis, if she did change her mind, I would personally look into haemo rather than pd. I did pd at home and the weight of carrying 5ltr bags of liquid to set up each night is really difficult.

There are some things you and your mum can do to help keep her egfr stable. Most will be around remembering blood pressure bills as that's a big impactor. A renal friendly diet will also really help. Low potassium foods and keeping check on iron too will all help. Hopefully she'll have access to a rental dietician.

I know it's so scary learning about this new health concern and I had a MASSIVE freak out when I found out but everyone honestly is different. And if her kidney failure is due to her age rather than something specific that has happened quickly, then in all likelihood this happened over a long period and will continue to move at a slow rate. My situation was very different as I had a virus which caused it and they think that's why it accelerates.

Good luck and I do wish your mum good health going forwards x

Goodness what a load of typos in that post! Hopefully you made sense of it OP!

And if you're on Facebook, consider joining the group 'Kidney Care UK'. It's for people who have kidney failure or family members of. It's a private group so anything you post won't show up to your friends. There is a good mix of ages and situations with many having relatives without dialysis at an older age. It's a good place and a generally supportive group.

Thank you GoEasyOnMe - I’m sorry to hear of your diagnosis but pleased to hear that you are making progress. Mum’s kidneys have been badly affected by her taking Furosemide to treat the fluid build up from her heart failure, which she has been taking for many years so her kidneys have been in decline for a while sadly. When considering dialysis we did look at the peritoneal dialysis but decided that mum wouldn’t manage it. She is a very frail 85 and lives on her own so no one to help her out and we just didn’t think she could do it alone. It’s interesting you say about the weight of the bags as no one mentioned that ! Just the fiddlyness of it all.

I started taking a closer look at mum’s health when my dad died 7 years ago and she had egfr24 then, so although hers is quite low now that’s maybe a reasonably slow decline? We do have access to a renal dietician and have had a few meetings where potassium/ salt etc have been discussed. Mum’s appetite isn’t great now though so getting her to eat much at all isn’t easy - let alone the right things !

Interesting that you mention blood pressure as mum has always had reasonably high BP and was on a few different tablets to desperately try to reduce it, but the last meeting we had with the renal consultants in July showed a massive drop (70/39!) and now she’s not on any blood pressure tablets at all and it has risen to a more reasonable level.

She is becoming less mobile and I fear the time will come soon when we need to look at some sort of nursing home for her - but maybe that might make it a bit easier to get her eating the right foods. In all honesty I’m not expecting much of an improvement (if any) but her other health concerns mean she doesn’t really have much quality of life at the moment.

Thank you for sharing your experience - as you say, there’s so much else that can also have an impact on the kidneys

Yes I have found the FB group - thank you

I have CKD and am expected to reach ESRD in the next few years. I am only young so will hopefully get to grips with dialysis and a transplant. I have however done loads of research and have seen that in elderly people, death from kidney failure is peaceful and not at all horrific, if that offers any semblance of comfort (which i’m not sure it will so please do forgive me if that is not what you want to hear)
I have even read it is a “nice death” if there is such a thing, just sleepy.
I’m sorry about your mum, hopefully she will carry on with limited kidney function for a while, the body is pretty amazing and can work at really low levels. for you both.

@GoEasy it is good to read about your experience, hope you are recovering well!

SandysMam thank you and I’m sorry to hear of your diagnosis. As you say hopefully you are young enough to be able to manage it until a transplant is available.

It’s funny you say that about kidney death being peaceful as this is exactly what the consultant said when we were discussing the options for mum. He said you just go to sleep and don’t wake up again. He was quite matter of fact which shocked us both at the time but I’m glad in hindsight that he mentioned it. We decided for mum (well she decided and I supported) that dialysis was intended to improve the quality of life and not just extend life indefinitely with no quality and this was one of the main factors in her choosing not to pursue the dialysis option and to continue with just the medication.

I really hope you are able to sort out successful treatment for yourself

@GreyhoundzRool It sounds like you are all on top of it as much as you can and having all the right conversations with the right people. Diet will be a massive help and just keeping an eye on bp is also a good idea (I'd suggest a home machine which a relatively inexpensive).

The decline you describe is fairly slow so I wouldn't get too frantic about timings. I agree with your comments about improving quality of life and it sounds like she's made a decision based on all the right factors. Yes, pd is hugely difficult if frail and on your own-fiddly and you have to carry a total of 20litres if fluids in various bags to set up. Then empty one giant bag each morning...any spillages leave sticky residue behind. It frustrates me consultants don't seem to mention this to those living on their own or elderly.

As @SandysMam mentioned, my GFIL passed away from kidney failure 6 years ago and it honestly was so peaceful. He came home for the last week and slept most of the time. Had some heartwarming conversations with my GMIL and then just went to sleep. I realise it's shocking to hear but hope it's comforting in some way?

Best of luck to you and glad you found the group

@SandysMam Sounds like you are well prepared! Myself and DH are now TTC with full support of team so there really are medical miracles!

Without wishing to hijack @GreyhoundzRool thread or sound patronising, do feel free to ask anything. It's been a fairly short journey for me but one which has encountered almost everything!

No worries about hijacking GoEasyOnMe 😊

Thanks @GoEasy...I may well do that. I met another transplant patient on here and she directed me to her blog which has been fab. Hope the TTC goes well, I have 2 kids already but was told before my 2nd that if I wanted to wait until after my transplant I could so they are obviously confident about it. Have seen posters on here stating they have had babies post transplant so might be worth trying to search out some old threads. It is scary but not as scared as I was when first diagnosed, I really thought my life was over.

Again, sorry for the hijack Greyhound, hope your mum is ok