CKD - Stage 5 - How long does it last?

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Hello all,

My mother, who is 87, has a large number of health issues: rheumatoid arthritis, hypertension, Type 2 Diabetes.  The main one, though - caused by years of Methotrexate use (which she stopped taking about 18 months ago) - is Chronic Kidney Disease.  Some time in the last 6 months, it reached Stage 5.  During that time, she's been hospitalised twice: once for hyperkalaemia, and the second time (as a result of the confusion she's now experiencing) for not taking her meds properly.  She had a full review of her meds on the last discharge (a month ago), and she's now taking them all properly.

Her memory lapses have become the most worrying symptom.  At first we thought they were caused by UTIs, and she took antibiotics for a while.  But she's now infection-free, and the lapses continue.  Her GP said it's all part of the illness.  We've now got a carer, who visits her every morning to check her with her meds, and I go in every evening and at weekends to check up on her, do any shopping she needs, etc.  She still lives independently, otherwise, and doesn't want to move from where she is.  I understand this, as the emotional disruption of leaving a place where she's been happy could be drastic.  We're also awaiting a Social Services needs assessment.

I know this isn't going to get any better, and will only get worse.  My question is... how long does this leave her?  Will there be other symptoms at a later stage that indicate a final decline? 

Thanks for any help anyone can offer confused

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9 Replies

  • Posted

    PS  I should have added that she's not on dialysis, but is being treated with medication.  Generally, she seems okay.  She has a bit of appetite loss, but no noticeable breathlessness or oedema. Not yet, anyway.
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    • Posted

      Sorry Harry,Mikewordman is right. How long is a piece of string?. I have been stage 4-5 for 13 years. My gfr reading fluctuate s between 12 and 19. I am on the Kidney transplant list as well as the Kidney pairings list and the double transplant list (Kidney/Pancreas). So i'm sorry there is no time limit.

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  • Posted

    Hi Harry,

    I'm sorry to hear about your mother.  What is her current GFR (metric indicative of remaining kidney function)?

    I don't think there is a concrete answer to "how long does X stage of kidney disease last" as it is dependent upon a huge variety of factors, including patient age, diet, lifestyle, and whether there are any complicating secondary diseases (eg. diabetes).  My best advice is this:  take a look at your mother's blood test results as far back as you can go and make a note of her GFR and the date each sample was taken.  Then, plot this data on a graph with X axis being date, Y axis being GFR.  You will likely see some sort of scattershot trend.  Draw a "best fit" line through the trend forward into the future, and when her GFR reaches somewhere between 8 and 15 (rough numbers) she will likely require dialysis.  Again, everybody is different; for some, the symptoms become overwhelming at GFR 15 and that's when they go on dialysis.  Others don't feel it nearly so badly and can go into single digits.

    That said, treat this as a very rough guideline, not an expectation.  If improvements to her medication and her health occur, it's entirely possible to slow the downward trend or (best case scenario) eliminate it entirely.

    Other classic symptoms of stage 5 include:  itchy legs (particularly in winter when it's dry); leg cramps, particularly at night while sleeping; restless leg syndrome; poor memory; cognitive difficulty; fatigue; uremic breath odour; low hemoglobin; decreased urine output.  Note that each case is different and people may experience some or all of these symptoms - you alluded to the poor memory symptom, which is indeed classic.

    I hope that helps, and please accept my best wishes for your mother's improved health.

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    • Posted

      Hi Mike... and many thanks for that very thorough answer.  I'll see if the GP can supply me with those results.  This memory loss has been for about the last 5 months or so, and has in recent weeks gotten much worse - though, now we've got her meds right and are monitoring them closely, she seems to have become more settled.  She doesn't show any of those other symptoms yet - just some loss of appetite, and loss of sleep... which she puts down to the fact that she's not burning off any energy.  She's hardly been out since her last hospital discharge, a month ago.  As far as the memory loss is concerned... on Thursday night, I went in and she immediately said to me 'Can you ring the surgery because they want to speak to you about my prescriptions.'  I did so, then relayed the information to her.  10 minutes later, she reminded me to ring the surgery.  I reminded her that I had done, and repeated the information they gave.  Then, 15 minutes later, as I was leaving, she reminded me again to ring them.  She has good days and bad days, though.  Today, I've been in a couple of times and she's been fine.  She remembers her TV programme times, and she's eaten a good dinner.  She also remembered to tell me that my brother had rung her from Greece (he's just flown out there on holiday), and she remembered the time he'd arrived.  So... an unknown quantity.  I just wish the Social Services would hurry up and get back to me about the assessment, as I've told them it's now urgent.  Thanks again, Mike.  Much appreciated.
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    • Posted

      Hi Mike

      I know you just listed possible symptoms for pre-dialysis. Can I ask how you felt before starting dialysis. Do you now feel much better physically with the dialysis treatment?

      I vary between no energy at all to being ok for a few hours. Restless legs at night are troublesome. That's pretty much it. I recently had a serious bowel cancer op and later a revisit due to a bowel perforation. These two episodes shaved off some of my remaining kidney function.

      Thks Mike

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    • Posted

      Hi John,

      Before I started on dialysis, I was experiencing every single symptom I listed above, plus a few more - nausea and "polyneuropathy".  These 2 sent me over the edge to finally decide to get started on dialysis.  I had a very bad and sudden nausea attack that laid me flat on my back for about 20 minutes - that got my attention.  A few days later I started experiencing what can only be described as a cold burning / buzzing sensation in the nerves of my arms, legs and face - that's polyneuropathy, and believe me I wasn't expecting it.  I had the operation within a week.

      Now that I've been on dialysis for about 4 months, I can say that I definitely feel better.  Not 100% of course - it doesn't restore 100% equivalent 'filtering' function - but I feel measurably better and my symptoms are significantly reduced.  Dialysis can be a P.I.T.A. sometimes, but that's the price you pay.  As I always say, "it's better than the alternative" and I'm very grateful to be able to have it.

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  • Posted

    Hi HarryChadwick,

    So sorry to hear about your mother's issues. I live in the U.S. , but from experience with my father they give a time line of 1 wk to several wks without dialysis, just keep in mind no one really knows. Confusion can increase alot without dialysis. No one person experiences the same final stages. We ended up putting daddy on hospice and they were wonderful to my father and my family.

    Blessings to you

    Jada

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  • Posted

    Hi,

    You Mother could be in stage 5 for years there is no time limit everyone is different, there are people who stay at a stage for a while.  Mine went quickly but we are not all the same.  Her memory loss will be due to the kidney function, I was terrible to the point where someone would say something to me and I would have to ask 3 times what they had said because it had gone, I also forgot what things were called it was horrible and frustrating.  I didn't have any swelling andwhere and never have.  Regarding her wanting food, please do not be frustrated with her when she doesn't want to eat anymore.  When I got to a GFR of 6% and my creatinine was 680 (ceatinine is the most important figure as a GFR is a best guess and they will look at creatinine as the important result) I couldn't even have food in front of me never mind any of it go near my mouth the thought of it made me feel sick never mind actually eating it. I would just enjoy every day you have with her no one can give you a time scale. Take care

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