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CKD4. Protienurea.

Posted , 5 users are following.

Stephy42820
Stephy42820

Hi I found out I had CKD when I was 19, apparently stems from an illness when I was 5, I am now 34.

Ive had it all these years and yet I still know pretty much nothing about it.

I work in the hospital and with my Nephrologist so tend to find it hard asking him things ( basically I dont want to sound stupid)

I have a eGFR of 25 which has decreased from around 34/35 mark after having my 3rd child in March.

I have protienurea and basically I want to know, can I replace this protien by adding it to my diet more? Is this likely to help? And why do I itch so flipping much?

If anyone has any answers to these questions I would be very grateful.

Sorry for the long message, never done this. Didnt even know it exsisted.

Thanks Steph.

1 like, 15 replies

15 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey Stephy42820

    Posted

    Steph, many of us would envy you being in a position where you  work alongside your nephrologist.  No question is "stupid", so do ask his advice.  Failing that, ask to see a renal dietitian for an expert answer to your question. 
  • john85166
    john85166 Stephy42820

    Posted

    I totally agree with MrsO-UK.  You should only take advice of this nature from the experts.  I have read that a high protein intake can put a strain on already depleted kidneys. Some diets recommend low protein, but do ask your renal doctor and maybe get referred to a dietitian.
  • Stephy42820
    Stephy42820

    Posted

    I am lucky that I work with him but at the same time he has his clinic to run while I do that so I dont ask him about myself as its the time for other patients, not myself. I dont think its fair to take his time when its set for other people who may be worse off than myself.

    Anyway, thank you both for your comments though as I have never been told about a renal dietitian. This may be a good idea to help me.

  • trollking
    trollking Stephy42820

    Posted

    It is quite frustrating, when i went to see my consulatant about 2 months ago my partner (at the time) asked about diet, he looked at me and smiled and said i think you are ok on that front.  I came away thinking you cannot tell by looking at someone what their is, it seems that no one is really worried until your GFR drops to 15 and below, i had a bllod test on FRI im waiting until tomorrow for results, last time it was 30 but before that 18 :-(
  • helen54849
    helen54849 Stephy42820

    Posted

    Hi,

    I like you found out I had CKD aged 9 after illness and was fine until after I had my second child my GFR delined rapidly after that and when I was at 20% I was predicted that the function would last 18 months (It didn't I lasted 5 months before I needed dialysis) I asked the very question you asked about eating more protien (so its not silly) and was told it would make any difference I would still leak way more than I could eat.  Sometimes people stay at stage 3 and ner change but once you go passed that stage and your GFR drops it doesn't go up unless you have acute illness but you don't sound like you do.  My advise keep a close eye on your blood pressure and don't use low salt that is worse than normal salt.  Avoid lots of normal salt.  Don't reduce your potassium or phosphate intake unless you are specifically told to do so by your neph as to reduce these things if your bloods are ok is dangerous and as bad as having to much.  Only take paraceptamol deffo no ibuprofen or anything without checking, even some antibiotics are a no no if your function goes any lower (your GP should always check your GFR before prescribing) Hope this helps if you need anything else please ask.  Please don't feel silly talking to your neph (they are qualified not you) and at the end of the day they are the ones to take medical advice from xx

     

    • Stephy42820
      Stephy42820 helen54849

      Posted

      J

      What i find annoying is that I was predicted to need dialysis when i get toy 50's if not older due to the rate of my GFR decrease. Obviously it has taken a very rapid turn for the worse and happened 20 years too soon. What i dont understand is, if its decreasing and not increasing at any point (never has), why dont they just do something about it now rather than waiting until ints "needed".

      Im in so much pain all the time which bothers me as I have 3 children and dont have time for it. Im exhausted as i dont sleep much due to the pain but whenever i say this to my neph he just says he cant do anything about that as its from my none functioning kidney.

      I dont know, maybe i just needed a rant about it. My family seem to forget im going through it. And i worry as my uncle passed away 3 yrs ago from kidney faliure and his transplant was done at the same age i am now.

      Its so nice to have people in the same boat x

    • helen54849
      helen54849 Stephy42820

      Posted

      Hi,

      I is very frustrating, they can't do anything until you are 15 % as this is when they allow you to have the tests to see if you are suitable to go on the transplant list (I don't know why this is the number) people have gone as low as 5% and not known anything about it (their words) I was 9% before they had to rush me through for my PD catheter as they wouldn't listen to me that my function was declining rapidly and didn't seem concerned until the last minute as other have said.  I have had a dietician for a while though and she checks my reults and calls me in when required so I guess I am lucky as far as that goes.  Even when I was due to have my catheter they made me sit in the hospital for a whole day and then tries to send me a way.  I refused to go so they had to do the op!.  As for the pain I don't have that so again am lucky, however when they transplant they usually leave the other kidneys there unless they are causing pain or other trouble so you must ask if the troublesome one can be removed at the time of transplant insist if you have to (sometimes you have to be stern and stand your ground).  I know what it is like to be tired if I sit down I go to sleep not as bad as before I started dialysis.  My advise to you (you should be told this by your neph around 20%) is to start researching the different types of dialysis (PD & Heamo) and see which would be best for you and suit your family life (I won't say pick which you would like as you are not chosing carrot or chocolate cake).  Ask if you can visit your local haemo unit and speak to people who actually do it, thats what I did.  I can help you with what PD is like but not haemo I can just give basic not personal about that.  Don't worry and keep us posted x

    • Stephy42820
      Stephy42820 helen54849

      Posted

      I have been told when it gets to.20% they will begin dialysis. Thankfully i can just speak to some of the girls who work around the corner about all that but like u said, thats not personal experience.

      This is so nice speaking to people in similar situations. Makes me feel less alone with it all :-)

    • helen54849
      helen54849 Stephy42820

      Posted

      Hi,

      I would take the 20% thing with a pinch of salt as I was told this and then was told 15% and when I got to that 12% in the end I was only 9% before they took anyy action even though I couldnt eat and constantly fell asleep they kept telling me I was fine for a bit longer so as long as you mentally prepare yourself that everything is not going to be as it should at 20% you will be fine.  Keep us posted with how you get on xx

    • john85166
      john85166 helen54849

      Posted

      Hi Helen

      I can't say this is absolutely true but I was told by my kidney doctor he had a patient that stabilised for 8 years and this was after he had the fistula. His condition was caused by hypertension. This person is now on diàlysis. It is all a big mystery with kidney appearing to have a mind of their own

    • helen54849
      helen54849 john85166

      Posted

      Hi John,

      A fistula is for dialysis??That is why they more than likley stablised Haemo dialysis is given through a fistula I doubt very much the presence of such with no treament through it helped though.

    • john85166
      john85166 helen54849

      Posted

      Hi Helen

      What I was trying to say was my doctor told me this patient's kidneys were at the end stage and he had the fistula op to be ready for dialysis.  The kidneys had then forno apparent reason just stopped declining and stabilised at that point for 8 years.  No doubt this person would have had to live with all those nasty horrible side effects but he didn't go on dialysis until 8 years later.

      I asked doctor today if a low BP is an sign of kidney stabiliity and he said 'not always'.

      I take my BP regularly and I'm pretty certain I become anxious in the anticipation which in turn gives me a higher reading.  

      Sometimes we just can't win.

    • helen54849
      helen54849 john85166

      Posted

      Hello,

      I see, it was clear to start I am sorry, that was really good news for that person then wasn't it.  No you are right we can't always win but chin up its not all bad smile

  • trollking
    trollking Stephy42820

    Posted

    My GFR results came back and had gone upto 34 which was great now i have come down with another kidney infection :-(, i seem to be getting infections at least once a month which is not good.

    Going back to your frustrations it seems that unless your GFR is below 15 then the consulatants dont seem to even worry, i have never been asked or heard from a dietition and i have had kidney problem since i was 3 years old (im now 42) sad times

    • Stephy42820
      Stephy42820 trollking

      Posted

      Good news about ur GFR, thays fab. Fingers crossed it stays that way.

      Thats a long time to not have been offered a dietitian. Maybe ask next time u see ur neph?!

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