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Kidney App

PostPosted: Fri Nov 25, 2016 1:54 pm
by Soobee
Hi,

My phosphate is (yet again!) too high - 2.8 mmol/l, I thought I was being good with my diet and taking my binders but I am clearly slipping up somewhere!

Can anyone recommend and app for the phone or some way for me to keep an eye on my phosphate in a more accurate way. I struggle with the 'high' and 'low' lists as they can be a bit vague and think I need to start looking a mg/serving and almost calorie count my phosphate (I think they do this more in the US?!)

I have looked but can't find a uk available app..... any suggestions?

Re: Kidney App

PostPosted: Mon Nov 28, 2016 10:44 pm
by JMan
Only one I can think of is 'kidney diet' app

It lists nutritional value of most foods servings.. But yes it is american

You could try keeping a food diary for a week or 2 and running it past a dietician.

They sneak things into everything, broad bean flour into some breads!!! WTF.. USUALLY phosphate/phospherous is an additive. Or in eggs, mushrooms, diary, dried fruit and nuts.. And fizzy drinks..

Re: Kidney App

PostPosted: Fri Dec 09, 2016 2:25 pm
by Soobee
Hi JMan,

Thanks for that, I did try to download it but can't as it's american :(

I might try checking the amounts of phosphate in everything after keeping a food diary. I have spoken to the dietician but to be honest I seem to have a better idea than they do, apart from the very basic info they tell me 'that's a good question' and kind of skirt around it. I also find they recommend things like cola as a low potassium option but on another list tell you to avoid it because it's too high in phosphate (there is no joined up thinking!)

I guess I just need to invest some time in looking up the values for my most used foods and do it the old fashioned way - with paper and pencil!

Re: Kidney App

PostPosted: Fri Dec 09, 2016 4:09 pm
by Dibs
I've been struggling with my phosphate too. Taking a binder when I'm at home is not a problem, but when I go out for a drink, pills are not the first thing I think of to take with me. Does anyone know a good link to view phosphate levels in alcoholic beverages? Is cider better than beer and lager?

Re: Kidney App

PostPosted: Sat Dec 10, 2016 6:31 pm
by wagolynn
Soobee wrote:Hi JMan,

Thanks for that, I did try to download it but can't as it's american :(

I might try checking the amounts of phosphate in everything after keeping a food diary. I have spoken to the dietician but to be honest I seem to have a better idea than they do, apart from the very basic info they tell me 'that's a good question' and kind of skirt around it. I also find they recommend things like cola as a low potassium option but on another list tell you to avoid it because it's too high in phosphate (there is no joined up thinking!)

I guess I just need to invest some time in looking up the values for my most used foods and do it the old fashioned way - with paper and pencil!


These may help - http://dietgrail.com/phosphorus/ http://dietgrail.com/potassium/

I would suggest you don't need to download them rather put them in your 'Favourites' then just click on the link when you need to use them.

You only need to control Phosphate and Potassium when you are on dialysis, until then only make changes if asked to do so.
The control is necessary because dialysis is not very good at removing them.
If we have a reasonably 'normal' diet we take in far more of these two chemicals than we need (both are in most food stuffs at differing levels), our kidneys throw the excess over board and keep us at a safe level.
Both of them are vital to life, so we should be careful when playing around with diet.

The best indicator is the monthly blood test, only make changes if the blood test suggest changes are needed, and then make them one at a time.

As your condition changes, you will have to make dietary changes.

Re: Kidney App

PostPosted: Sun Dec 11, 2016 9:05 pm
by Soobee
Hi Wagolynn, thanks for the link, it looks good, I just need to do a bit of maths and work out where I'm going wrong...

I'm on dialysis and been avoiding high phosphate foods (and taking my binders), my phosphate was 2.8 last blood test (I think it's supposed to be 1.4 or less?)
Do you have monthly blood tests? Mine are roughly every 4 months!

Re: Kidney App

PostPosted: Mon Dec 12, 2016 4:32 pm
by wagolynn
Hi Soobee,

Yes we have monthly blood tests, I would think they are essential, at least until things are under control.

I would suggest you keep, a very accurate, food diary including snacks and drinks, once you have things under control you can stop it.
Use it to check which food is causing your high readings.
High value foods need to be compensated for by eating some low value foods at the next meal/day.
Things like chocolate, coffee, crisps, become occasional treats.

This should help with bloods. http://www.edren.org/pages/edreninfo/bl ... isease.php

We see our dietician after the blood results are out, at dialysis, she discusses with individual patients what changes may be required.
The dietician is also available on the phone, and will look up particular foods for us.

There are a few good cook books for people on dialysis which help to get you going in the right direction.

Don't hesitate to post if you have further questions, most of the people on here have gone through the same learning curve.