stage 4

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Hi 

I haven't had the opportunity to even talk to someone else with CKD so it is all new territory for me. I was diagnosed with CKD some years ago and have been sitting at GFR 20 for a little over a year. My condition was apparently caused by hypertension which is now under control thanks to my specialist. My last blood test showed a drop to 18 and my creatinine is now 300. I just wonder with the blood pressure under control if anyone out there has been lucky enough to stabilise the condition. If so, did diet played a part or is it all one big mystery.

I have discovered my restless nights and twitching legs are eased dramatically when I don't eat meat for a few days. Problem is each time I do this I tend to lose weight.

Any words of encouragement would be gratefully received. I do love to lead an active life but my energy levels are pretty low these days. I just retired and I'm 65 years old.

best to all

John

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11 Replies

  • Posted

    Hi John,

    I have CKD caused by untreated infections as a child (its wasn't through want of seeking help on my mothers part) I had a steady GFR for years then when I was 35 it started to drop all the way down to 9%.  I think you need to realise that once it goes to around the 20 mark it is not going to recover.  No one will be able to tell you how long it will stay like that for (I was told 18 months and it was 5 months to drop from 20-9).  Do not use low salt its worse than normal salt and under no circumstances change your intake of potassium or posphurs unless you are specifically told to do so by your neph or dietician it is dangerous if you alter these levels and your blood work is ok.  You will be told if you need to take action or you can ask about your blood results.  Your body is a very clever thing each time you have a drop in function you get used to it and your body adapts.  I didn't really have any symptons except for tiredness until 12% when I couldn't eat the very site of it made me heave. I have been doing pertineal dialysis for nearlt a year now and although back not back to normal I feel a lot better (I don't fall a sleep if I sit down!).  I am still able to work, this is very important to me as its how I have been brought up.  Take care and keep us posted its not scary really you just have to get used to it.

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    • Posted

      thank you Helen for replying.  I truly appreciate what you have told me.

      Best of luck and take care

      John

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    • Posted

      Hi,

      Low salt or salt substitue is high in potassium and therefore bad for people with kidney issues.  My dietician and neph both told me to avoid normal salt is better but once you get used to it you dont need it.

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  • Posted

    John, reading about your experience with "twitching legs" is making me wonder whether others with CKD have a similar problem.  Just last night I was awake and up and down until around 4 am unable to stop the twitching in my legs and feet and muscles going into spasm.........I had eaten beef both last night and on the previous day.  I don't know whether my problem is due to my CKD3 or to a slippage of my lower spine.

    ​Knowing that muscle cramps can be caused by low magnesium and potassium levels, I requested blood tests for these a year or so ago but both came back normal 

    It would be interesting to hear whether others with CKD experience this symptom - meanwhile, perhaps I'll start keeping a diary of whether my meat intake days result in night cramps following your discovery.

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    • Posted

      MrsO, I've often seen in the literature that a moderate dose of alcohol is fine. Well I have my doubts with this, perhaps everyone is different, but I think my kidneys would have less work without that 1 beer each night.

      Finding ways that help relieve the symptoms should logically be taking some of the strain off the kidney function. Thereby helping slow the decline. Don't you think?

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    • Posted

      John, a consultant has told me that the odd glass of wine won't do any harm, but I must admit I do try and avoid it except when out dining in a nice restaurant when I will indulge in about half a glass of red!  Like you, I feel that alcohol may place unnecessary stress on an already reduced functioning kidney (I only have one, having had the right one removed as a youngster some 60 years ago).  Drinking water alongside the alcohol is probably to be recommended.

      ​I stopped adding salt to my cooking many years ago, but obviously do eat a little salt in the occasional ready-made or preserved foods that we buy.  Certainly my renal consultant told me not to increase salt in my diet.

      ​Apart from that, I find there is little advice from the kidney experts as how to protect our kidney function from further deteriorating.

      ​The worst battle for me these days is my high blood pressure.  I have found that some BP pills can worsen kidney function and I've tried a whole range but unfortunately the ones that are most recommended for low functioning kidneys gave me nasty side effects, wheres the low doses of the ones that I can tolerate are not proving successful at reducing my BP.  Between a rock and a hard place, it seems!

      I hope your next blood test will show an improvement, at least back to your original stable 20 - good luck!   

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    • Posted

      MrsO-Uk. I guess if one glass of wine or beer helps with the relaxation at the end of a day then it is good.  Probably lowers th BP.

      I wonder if a steady low BP reading is a good indication of stability.  When my creantinine went really high it was the same time I had to stop a BP tablet due to the tablets side effects.  Maybe a constant BP monitoring is good and when it gets high .. panic.  

      What I do hate the most is when you ask the kidney specialist he always says 'could do' or 'maybe'  They don't seem to know much with prevention.

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    • Posted

      Hi MrsO-Uk

      I'm intriged to know if you managed to abstained from meat for a few days and if the leg twitching eased.  

       

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    • Posted

      John, interestingly, during last week and over the weekend, I didn't have any red meat, sticking instead to white meat (turkey and chicken) and fish, and haven't experienced my usual foot/leg cramps and twitching for the whole of last week.  However, last night the problem was back with a vengeance - I'd eaten roast lamb on Monday and Tuesday evenings!

      ​Although there are many reasons for experiencing cramp, I believe that having kidney disease is included in the possible causes.

      ​At my latest renal appointment, last week, I was called in by my usual consultant's registrar (think the consultant has given up on me!).  I asked her whether she thought it would help to see a renal dietitian and although she mentioned that the dietitians were probably unable to help much unless creatinine, potassium etc were a problem, she would arrange for one to contact me.  I will certainly put the question of red meat to whoever calls me.

      ​I apologise if I don't always reply promptly to messages - very busy charity volunteer running a local support group......so don't give up on me!    

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    • Posted

      we all have our different theories about what works and what doesn't.  I guess it is an individual thing.  I've decided to try and listen to what my body tells me.  If a food type doesn't agree with me I will file that away and tried to resist anymore cravings.  No meat on a regular basis anymore, instead sticking to kdney or chickpea vegetable casseroles. I might look into organic meat once a week.  Free range chicken only in very small portions. I still get cramps in my legs but I now do a regime of stretching exercises, sometimes before bed.  This relieves all that tightness.   I even tried a little yoga to hopefully lower my BP.  This is the same as stretching only with proper breathing.

      My creaiinine went way too high very quickly recently and things did not look good.  So I followed my new strick regime and the creatinine stabilised, even dropped back a little.  I feel sure the less work you put your kidneys through the longer you are able to slow the decline.  It is hard work but it is worth it

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