Does this ring bells with anyone else?

I am very confused; my latest blood test shows GFR 23%, creatinine 243, haemoglobin 9, Urea 14.7; looking on the internet, I think that puts me at stage 4 - is that right?

I have been told that I need not worry about my diet (only watch the salt levels which need to be as low as possible). I feel depressed, but not really that lacking in energy (though I do get breathless - which I suppose is the haemoglobin).

I get a heck of a lot of burning and itchy skin - mainly in the evenings - I dread that time of day; I try to put off going to bed until 10 pm, because I want to be so tired that I will fall asleep quickly. Oh, and the one thing I have not read or heard of from any other sufferer of CKD is that I permanently want to eat..

8 Replies

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  • I am at stage 4 and eat constantly! I ended up going to WW, but I have never had a problem with my apetite x I get down, and itch sometimes, get tired and have a little nap late afternoon (if I need to). Not been to to watch my diet as such, but watch the phosphates (i am on Renegel binders). Hope this helps xx

  • yes that is stage 4 my husband was the same with itching he uses e45 itch relief his was caused by high phosphates you could try a lower phosphate diet to see if it helps it won't do any harm & also your haemoglobin sounds low you may need to start EPO injections am surprised they hav'nt mentioned this as 9 was about the level that my hubbbie started on! especially since you get breathlessunfortunately they don't seem very helpful until your on dialysis then you have so much help & advice you get a bit overloaded with it!

  • yes this is stage 4 as the above have both said. I too am at stage 4 the difference being PKD can suppress the apetite so unlike you I don't eat, which is not good when you need to loose weight ready for transplant. However, if I did eat I would not be on a restricted diet or liquid intake. As for the itching I am sure my mum used to take garlic capsuls, I'm not sure it this works as I don't have this symptom and she is no longer with us so I am unable to confirm, but you could try. Also try a cool shower or bath before bed to relax you.

  • Hi there,

    I am on renal failure and doing work up for dialysis. When I first started itching......which was more like pins being stuck in you......I started moisturising my arms etc. every night and morning. Just a light moisturiser, one that is absorbed quite quickly and is cheap. I use the M and S ones at £1 and they are very light.

    Also as stated above watch your phosphates. Low phosphate diets are easily found on the Internet. Also drink lots of water.

    Good luck x

  • Thank you all; the worst thing (I think) about this all is being totally unaware that my one kidney was fouled up; I had been getting symptoms (which if I had known I could have tied in with kidney failure), but I put them down to fibromyalgia, back pain, depression etc..

    From being totally unaware that there was a problem with my kidney(s), I was in hospital with gfr 10%.. suddenly, overnight, I felt really ill. It is as if my life was suddenly going to be cut very short; now I am trying to adjust to suffering from what I understand so many people do - something about which I was totally unaware.

  • You will start to feel better about what has happened to you and come round to the idea of the changes to your life. A year ago when I was sixteen my kidneys completely failed with no warning so I can understand how you're feeling :) Now though, I have a pretty normal life again apart from dialysis. Get in touch if you want to talk or even just moan, Hope you're keeping well :) x

  • Justagirl, so pleased that you are now feeling much more positive about being on dialysis. Hope you studies are still going well xx

  • Hi again,

    Yes I think that we can not understand what our body is telling us sometimes. I was happily plodding along at 20 % for years and then suddenly it's dropped to 17, 15 , to 12% over the space of a few weeks and then suddenly all the tests for dialysis brought it home to me that this was the real thing, and it is scary .

    But the renal team here is wonderful and supportive. So please talk to the renal councillor or the nurses and they will give you as much information and support as you want.

    You are not alone, and good luck xx

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