New & need advice on ckd please - Early CKD Support

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New & need advice on ckd please

fabricteapot profile image
3 Replies

Hi.

I'm new here so hi from me here in London UK .........I have lived with ulcerative-colitis (an autoimmune disease ) for the past 40 years and through diet and meds have managed to keep it mostly pretty much well under control..I'm now nearly 60.

I went to see my consultant at the hospital October 6th (a couple of weeks back) and they did the routine blood checkups etc.

I received a copy of the letter they had written to my G.P.

Going through their results I noted the letter was calling attention to the fact my creatinine was 95 and my GFR was 52.......I also noted it drew attention to the words renal abnormalities.

I have made an appointment to see my G.P. in a weeks time.

I am experiencing headaches (although not really severe), slight pain in my lower back kidney area and fatigue (which is enough to have me resting in bed most days by 4pm) I am also experiencing pain in my left arm which spreads across my neck and shoulders and prevents me from moving my arm properly. Then many nights although I'm tired I cannot get to sleep, I have never had this before.

I have read that some autoimmune diseases can cause CKD as can one of the meds I've been on for many years.

Please can someone help me decipher my results and current symptoms, what do they mean if anything and if I am in stage 3 CKD how long before that escalates to stage 4?

Thank you from someone just a little worried

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fabricteapot
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3 Replies
Matt_R profile image
Matt_R

Hi,

Sorry to hear about your troubles. I've recently been diagnosed with ckd and I am also at stage 3 although I am 37. I've been told that approx 1% of sufferers progress beyond stage 3 and I was described st the moment as a watching brief. I would ask your GP to refer you to a nephrologist. My nephrologist basically told me to avoid salt, drink 2litres of water a day and eat well to avoid diabetes and high blood pressure which can cause ckd to progress. I was also told to avoid anti-inflammatory drugs and trimethoprim (antibiotic). Good luck!

phillen profile image
phillen

sounds like you are in stage 2 yes some meds cause problems my husband like you is nearly 60 has been on dialysis for 5 years he's had problems virtually all his life he was stage 3 for about 15 years but then unexpectedly went through stage 4 through to 5 & on dialysis within 1 year for most people it is a chronic disease that you live with for many years but my hubbys suddenly went acute (quickly) he also has heart problems so that probably didn't help

But equally my mum now 83 had acute failure caused by stones blocking her kidneys which when they cleared them she went to stage 3 & has now improved to stage 2 this has happened over period of 10 years! she's never had to have dialysis

so you just don't know it can also improve a little you sound like you are experiencing some signs ie fatigue, backache, sleeplessness! you can experience these in the early stages although some drs say you don't i think most people living with it will tell you otherwise!

jaykay777 profile image
jaykay777

Welcome, fabricteapot. I'm Judy, recently diagnosed with stage 3 kidney disease and fairly new here. I'm happy you said, " through diet and meds have managed to keep (ulcerative colitis) mostly pretty much well under control." I'm 84 and have had ulcerative colitis for three years. I hope you will find as I have, that the dietary skills used in following the ulcerative colitis diet make it fairly easy to incorporate dietary changes needed to manage kidney disease. In addition to consulting a kidney doctor, I had a session with a renal nutritionist. At my request, members of this online community posted the names of renal cookbooks they recommend. The ones I bought incorporated information about kidney disease and its treatment. I bought two, and find them helpful. Perhaps you can find some published in UK. I know UK measurements of travel distance are different than here in the U.S., but don't know how it works for cooking measurements. I visited London in 1951 after attending an American summer art school in France.

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