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Sun Jan 23, 2022, 09:37 PM

CKD

This seems to be a pretty inactive group, but I have to ask if anyone else has CKD? I was recently diagnosed, have found a renal/diabetic dietitian to help me with what I can eat (after a week, i am REALLY hungry since I'm afraid to eat anything), our first telehealth session is tomorrow afternoon. I am gobsmacked by how much conflicting and contradictory dietary information is on the web. Eat ABC, avoid ABC. DEF is beneficiary to kidneys, DEF further damages kidneys. It's incredible and useless. Anyway, wondering if anyone here has coped with this.

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Arrow 9 replies Author Time Post
Reply CKD (Original post)
birdographer Jan 2022 OP
Tetrachloride Jan 2022 #1
marybourg Jan 2022 #2
birdographer Jan 2022 #4
marybourg Jan 2022 #5
birdographer Jan 2022 #6
marybourg Jan 2022 #7
birdographer Jan 2022 #8
BoomaofBandM Jan 2022 #3
StopTheNeoCons Feb 2022 #9

Response to birdographer (Original post)

Sun Jan 23, 2022, 09:42 PM

1. I am loosely affiliated with 3 in the kidney issues area

i will watch this thread and section

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Response to birdographer (Original post)

Sun Jan 23, 2022, 10:27 PM

2. I have some kind of undiagnosed sporadic

kidney failure. My nephrologist says I should eat normally, until he tells me otherwise. I think much of it depends on what stage you’re at and what your protein situation is. Did your nephrologist recommend consulting a dietitian?

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Response to marybourg (Reply #2)

Mon Jan 24, 2022, 11:33 AM

4. dietitian

I have yet to see the nephrologist. Referral was about 10 days ago, my doctor (who is an inept NP) said to give them 2 weeks to respond. I found my own dietitian who has a private practice, specializing in diabetic/renal diets--our first phone consultation is this afternoon. I have been eating very little since diagnosed, mostly some steamed cabbage and onions or steamed collard greens (very low in potassium), berries, and a slice of white bread or low-sodium -potassium water crackers. Twice I went berserk and had half a boneless chicken breast for dinner.

I am very interested in the comments that numbers actually change. I thought that kidney damage was permanent and that's what the number represents.

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Response to birdographer (Reply #4)

Mon Jan 24, 2022, 11:50 AM

5. I would not see a dietician until after seeing nephrologist.

You need to know what kind of kidney disease you have. Yes, kidney disease can be acute or chronic, or maybe even some combination.

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Response to marybourg (Reply #5)

Mon Jan 24, 2022, 02:00 PM

6. Good advice...

But I need to know what to eat. I will talk to her about that. Ten days ago I was Stage 3, borderline 4. I cannot wait what could be weeks to get an appt with a nephrologist just going on cabbage and collards with an occasional half boneless breast. Diet info online is amazingly contradictory. I'm hungry all the time and often lightheaded from it. I have to eat. I need some kind of guidance. My NP's sole advice was "eat a low-sodium diet and drink at least 64 oz of water a day." Nothing about protein or anything else.

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Response to birdographer (Reply #6)

Mon Jan 24, 2022, 03:24 PM

7. Because you don't know what your protein situation is until

you see the nephrologist. I think you should forget what you’re reading online and follow your NP’s advice until you see the nephrologist.

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Response to marybourg (Reply #7)

Mon Jan 24, 2022, 05:28 PM

8. Thank you

I have a feeling trying to explain my particular situation further would not work, so I will say thanks for the advice!

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Response to birdographer (Original post)

Sun Jan 23, 2022, 10:40 PM

3. I had some bad numbers, and I did adjust my diet. My numbers improved. I was supposed to get

checked after a year but then covid happened. Do not know if it was the diet change or just a fluke, but the nephrologist said the diet changed would not hurt. I tried to follow what the kidney foundation suggested.

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Response to birdographer (Original post)

Tue Feb 1, 2022, 02:17 PM

9. A blood test 3 years ago

showed my eGFR at 58, which is in the red. I started eating a little better, cut down on sodium big time. But at one point, a followup blood test showed a 47 eGFR. I then started taking 2 quarter teaspoons of sodium bicarbonate or potassium bicarbonate every day. My latest eGFR after 3 years of working on it shows a 66, in the black.

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