Single kidney stage 4

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Hello I have a single right congenital kidney at stage 4-5 have been told that I will need a transplant sometime in the next two the three years when I asked about dialysis

Was told it would not benefit me so now I sit and wait for someone to tell me what happens next

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  • Posted

    You've not mentioned your creatinine or kidney function levels. Your body is an amazing thing and your function can go down to single figures without needing dialysis. There isn't an infinite resource on kidney machines and your specialist will monitor how you are feeling and that will determine when you are ready for dialysis. If you feel ok, there is no need to put you through dialysis. There are other factors such as potassium levels that MAY trigger early dialysis, but again, that will be your specialists call. It's easy to say, but try and think that if you haven't been put forward for dialysis, you're still relatively ok (on the grand scheme of ckd)

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  • Posted

    Hi Stuart,

    Do you have a measure of your kidney function- your GFR?  Depending on this, you may have quite some time before you need dialysis.  My consultant said that wnen your GFR is 18-20% you get referred to the renal replacement team who tell you all about dialysis.  Exactly when you need it varies quite a lot but its it usually when you get down to less than 15% though for sme it is less than that. Meanwhile you should be having regular blood tests.  You can see your results on the website called PatientView if you ask your consultant to set it up.  You need to keep your blood pressure well controlled and watch your Haemoglobin levels to see that you don't get anaemic and need iron supplements, folic acid and Vitamin B12.  If your Hb is Ok and your bp controlled it helps to keep your kidneys healthier.  Good luck.

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  • Posted

    Dialysis would only give you around 20% function and you are probably more than that at the moment  which is why your consultant stated your not being suitable and he's estimated the time you have regarding your current function and the need for a transplant and figured that would be the best way to move forward for you.

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  • Posted

    Stuart, I, too have a sole kidney, the other having been removed in childhood many years ago.  I was diagnosed with CKD3 just over 10 years ago and my function continues to slowly decline (the last reading 39 having risen from 37), probably due to very difficult to control high blood pressure.

    Although you haven't mentioned your present eGFR or creatinine levels, I guess your function is fairly low if, as you say, you are stage 4-5.  With any luck, whatever eGFR you are at at this moment in time,  your remaining function is stable and could remain so for a considerable length of time.  To help this along, eat healthily, avoiding salt (very high in processed and preserved foods), exercise regularly within your limits, and ensure that you are monitored regularly for other risk factors, ie blood pressure, cholesterol, blood sugar.

    As for sitting and waiting for someone to tell you "what happens next", just ask those treating you all the questions that come into your head - they are the experts and the best people to answer those questions and reassure you.

    Good luck and do come back and let us know how you get on. 

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  • Posted

    Hi,

    I was 6% GFR when I started dialysis, and dialsysi DOES NOT make your kidney function go up.  It is not designed for that it is designed to remove toxins from your body and in doing so it takes good stuff out to as it cannot tell the difference of what is good and what is not.  Depending where you live depends on when you get a neph, I have had one since I was 13 and stage 3 but this differs.  I started having the dialysis talk for me to decide around 19% but my GFR dropped really quickly when I got to stage 4 (we are all different, so others can take ages).  They don't like to do dialysis too early and it will depend on what symptoms you have and how you are coping with them (I call it the limbo bit as you don't feel right, but not bad enough for dialysis).  I was told I would need dialysis in 18 months I actually lasted 7 months so do not take that time scale of 2-3 years as what it will be as they really do not know and cannot tell you time scales.  You have to wait for a transplant if you go on the list and even if you find a live doner you have to wait for all the tests to be completed.  Just do what you have been doing keep your bp under control, don't eat salt or low salt or use ibuprofen.  Only change your diet if you are specifically told to do so.  Finally there is a lovely lady on her of more mature years who like you only has one kidney and despite some blood pressure issues she is doing ok, she is a strong lady who is a real fighter.  Good luck with everything.

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    • Posted

      Ah Mrs O, 

      you made me chuckle this morning when I read your reply.  You see I have no filters and so I have to think really carefully how to put things.  Sometimes I am surprised by what comes out of my mouth as everyone else.  In your posts you come across as very much full of fun and energy(even if at times your body isn't willing like mine wasn't) age is just a number.  My Nan always said this, everyone loved her and I miss her dearly.  Even at 86 she would hitch her skirt up and tuck it in her knickers to crawl round on the floor and play silly beggers with the kids.  I didn't want to be 30 so for the past 10 years I have been 29 and I will continue to be that age til I look a bot older.  When I go to the town for a couple of drinks with my daughter and she shouts Mum, people say why are you calling her that, my daughter says because she is my Mum quite funny, either she looks really old or I look really young xx

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    • Posted

      Ah, Helen,  "age is just a number".  Reading that reminded me of my beloved aunt who passed recently aged 91 - it was one of her favourite sayings!    Reading the lovely story about your Nan hitching her skirt into her knickers to play on the floor with the the littlies reminds me of my teenage years when working in an office with a few other youngsters and a very much older lady.  The latter told us a story of when she was singing in church when suddenly the elastic in her knickers went and they landed around her ankles.  Years later another staff member in a very high profile position in another job was walking in front of me and the back hem of her skirt was caught up in her knickers.  Now I must stop or I'll be in trouble for hi-jacking this thread!  Stay looking young, you!xx  

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