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  • new girl

    Hi, I saw my doc last week about something and he read back through my notes and saw some blood results from a couple of months ago. His face screwed up and he said -you've got Kidney disease stage 3. told me to get pee test and blood sample sent off the be checked.
    Him and me a bit stunned. If I hadn't had that test before (for other random things) I wouldn't know about CKD.
    I've read loads online and I'm a anxiously waiting to see doc again on friday afternoon to get the results of these new tests. Then to find out what it will all mean for me.
    the diet, food, etc all seems a bit complicated.
    looking for some support please
    thanks x

  • #2
    Hi revmother2...One of the facts of chronic kidney disease it that there are many people who find out they have it by random blood tests. That is exactly the way I found out. In the early stages there are usually no signs and symptoms. I know it's scary when you find out. I freaked out. But what I did was dive in and find out as much as I could about the disease and what to do. I am still learning. I am also stage 3. A few things you can do at this moment is read. If you are not eating properly start now. If you don't exercise start. I am still having trouble with this one.
    Have your questions for the doctor written down for when you see the doctor so you don't forget in the moment. He might send you to a nephrologist. (kidney doctor) or he might wait till you progress. I don't know how old you are or what your numbers are but it could be possible that you will never get to the point of dialysis. This is a good place for support and some answers. Glad you found this site.

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    • #3
      Hi scaredycat, thank you for your reply. I'm 65, been retired 2 years. I've read loads of stuff on the internet but I'm finding the diet guidelines very hard to understand - I suppose it is so different from usual. I have dropped salt (almost) in the last couple of days. Can't make out what food has high potassium or phosphates and until I know my numbers I won't know how much of anything I should have. lots of good recipes on here
      Are there any foods you can eat as much as you want to?
      only 2 days and I should know more. I'm really not liking the waiting.
      thanks again

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      • #4
        Originally posted by revmother2 View Post
        Hi scaredycat, thank you for your reply. I'm 65, been retired 2 years. I've read loads of stuff on the internet but I'm finding the diet guidelines very hard to understand - I suppose it is so different from usual. I have dropped salt (almost) in the last couple of days. Can't make out what food has high potassium or phosphates and until I know my numbers I won't know how much of anything I should have. lots of good recipes on here
        Are there any foods you can eat as much as you want to?
        only 2 days and I should know more. I'm really not liking the waiting.
        thanks again
        I used to be a salt-a-holic but no more salt for me at all. I use a lot more seasoning these days. Only no salt seasoning. The diet is hard to understand. There are so many conflicting reports of what is good and bad along with peoples misinformation. What I did for a while is look up everything online to see its content. Phosphorus is harder to find than potassium. Milk is kind of a no-no. Rice milk is not so bad though. I don't eat potatoes (no potatoe chips) and bananas any more. Dark sodas are a no-no. They say you can drink sprite,rootbeer. i have noticed which I didn't notice at first that there is potassium in diet drinks even in the sprite and rootbeer. But the full sugar drinks don't. To me it's just not worth it. I drink a mountain dew every once in a while. It's probably bad due to the caffiene. As for foods that you can eat as much as you want well snacking is probably not a good idea. Best to keep track of what you eat. Later on when you get your numbers you will be able to adjust what you eat to your numbers to some extent. I eat a little cheese once in a while. If you keep track of whats in it sometimes when you just need to have something and its worth giving up something else you eat it. Just not a lot of it. But all that being said you might not have to restrict anything at this point. Since you don't know your numbers. I understand how waiting is nail biting. I was terrified and still am occasionally. The other thing is if you don't exercise you might want to start. Diet and exercise are the main thing to slow the progression of CKD. I am still having a hard time with the exercise thing. I hate exercise. Take care and let me know how your tests come out. Remember you are not alone.

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        • #5
          thanks for all that info Scaredycat, I've been reading some of the recipes on here.
          Are you in the UK? There are lots ingredients in the recipes that I don't recognise, and its all in cups! I've got cup measures so just have to use them!
          bye for now. I'll get back after I've got my results.

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          • #6
            I am frustrated that your MD NEVER saw the drop in kidney function before this? it goes down slowly with age, over YEARS, naturally, so before you were stage 3 you were stage 2 ( dont let that stress you!! not like cancer)

            doesn't matter WHAT the numbers are, you still need to change your diet NOW..there is not time to fool around with this. DO NOT wait til dialysis and then really be restricted on diet.

            I raised my function by 9 points from Gfr 26 stage 4 ,back UP to 38 Stage 3b..in 30 days, with a vegetarian diet…figured it out myself.

            just look online and in this site for high/low potassium foods..easy to do. tomatoes, avocado, spinach are higher, while berries are lower.. they gauge it by the amount per cup/grams… so your serving should be from the lower group..cauliflower is lower than broccoli, etc.. it really is not hard to figure out.

            DO NOT go buy a lot of ingredients, you will not stick to a new diet AND all new foods… chose your top 5 recipes you like, and figure how to convert them.

            an example..I by low carb with high fiber tortillas, use vegan cheese, and mushrooms all heated to make a great cheesy 'taco"… skip the salty beef the high protein cheese, and chose what i CAN have..and adapt it.

            Like mashed potatoes? (high in potassium) Use cauliflower, you can "rice' it in a blender, and cook, whip up to make "mocktatoes" with butter and flavorings...

            I found out my CKD was high after I lost a kidney to cancer, and they NEVER warned me about anything but "less salt"..I lost 3 years when could have KEPT a better function by changing my food THEN..now they are making me see a renal dietitian and all the rest…a bit late.

            SO my TRUST is gone..this is totally TYPICAL for current MD practice.

            you are you own captain, this is NOT a death sentence, learn as much as you can,ask questions, and if you are outside the USA you are fortunate that those doctors do believe in a low protein diet..in the USA they want you eating meat so you are not malnourished by the time you become their patient, so it serves them and not you!

            dont get to that point..change you diet in small ways and keep going.

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            • #7
              You can still potatoes but you have to peel them and cut them up and leech them in a pot of water for at least 3 hours to leech out the potassium, dump out the water, rinse them off and then cook them, you have now leeched 50% of the potassium out of the potatoes.
              Salt is a no no, any kind, the one thing I see that is never mentioned here is phosphorus, phosphorus is the worst thing on you kidneys, even in stage III.
              I was classified stage V in 10/17/13 and started hemo dialysis and did that for a year; I had so many bad sessions with it and then I found out about Peritoneal Dialysis and do that every night when I go to bed, wake up and then go about my day, so much better.
              Just remember stay away with anything that has phos beginning in it the ingredients.

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