Just learned that I at beginning of stage 3 of ckd

[drafky]

Went to nephrologist for first time. He told me to use non-dairy creamer instead of milk. I have not been able to learn how much phosphorus the various brands contain. I called one manufacturer and was told this info was proprietary. Any suggestions would be helpful. Also, should I drink regular or low fat-sugar free creamer? Thanks in advance.

[rabbit01]

The good news is that you have found out at a stage where with the correct diet, exercise and hopefully fixing of the underlying problem that is causing the CKD you may be able to stay at stage 3 forever. My advice would be to get a print out of your full blood test and take this to a renal dietician. They can fully understand all the parameters in the blood results and advise what food is good and not so good for you. Even if you have to pay for a session with a private one I would suggest you do it. Unfortunately I was not diagnosed till late stage 4 but I am desperately hanging on and doing everything I can to delay going on dialysis. My egfr has been stable at 18% for two months now which I put down to following a very careful diet. Good luck.

[jg2015 in reply to rabbit01]

Hi Rabbit, was wondering if you had gone to a dietician after your last post, it sounds like you did from your response, any good advise to pass on? Thanks

[rabbit01 in reply to jg2015]

Hello there! Sorry for delay in responding. Yes I did have a meeting with a renal dietician but to be honest it was nowhere near as good as I was expecting it to be. Although she was a very nice lady it was a bit of a waste of time as all she really did was confirm that the diet I had put myself on was ok. I guess that is no bad thing but I was expecting her to print off a customised list based on my blood levels of what I could eat and what I should avoid but there was nothing like that. She gave me a leaflet but again this was very basic and on a single A4 sized sheet of paper. I have picked up much more information just surfing the web.

I am pretty geeky so I have read about this condition and what other people have found works for them quite a bit now. I think if I had been diagnosed earlier and seen one it would of been useful but it just seemed for me that at stage 4 it was too late to help my kidneys by diet change. I don't like to think about it but I reckon that if and when I am on dialysis and all my blood levels are far less stable than they are now then a renal dietician would be of value but at the stage 4 I am at now I did not get anything from her than I could find on the internet. My EGFR has improved by 3% (so now at 21%!) over the last month or so and I put that down to the diet that I have put together myself so I am sticking with it.

How are you doing?

[jg2015 in reply to rabbit01]

Hi Rabbit01

Thanks for your reply, hey and well done for raising your Egfr level off your own back. You know I have been at stage 3 for 13 years and now I'm beginning to wonder if I was ever at stage 1 or 2 because it wasn't found until 3. So, for the past 13 years I have done nothing to help myself and only in the last month or so I have had a few hiccups and looked at the food intake so you need to take credit for what you have achieved, you sound so determined and prepared to put the work in I'm sure you will keep this stage for a long time. I'm assuming you are on medication now although I have noticed from this forum we all take different meds.

I was thinking about whether you would see a dietician after your last posts and am disappointed that this wasn't time or money well spent but if there is any way I can scan/copy what I have over to you I would be happy to do that. You admitted that you are the tech geek so I'll leave that with you, haha.

Just out if interest have you switched to rice milk (with added calcium) as cows milk is high in potassium, it tastes okay in tea and with cereal although I cannot have a glass of it. If you can't stomach it then limit cows milk to 1/2 pint per day but also use this allowance for yoghurts and ice cream.

I'm now on monthly blood checks as potassium down to the recommended levels but I'm now wondering if it will have a knock on effect with other things like cholesterol as the diet is leaning very heavily towards white bread, white rice, pasta, and by boiling the veg I'm losing out in other minerals too, add to that we are relocating overseas again this week so I'm going to be faced with a whole load of new fruit and vegetables that are not on my list!!

Best of luck with everything and let me know if I can pass on my booklet, it was published by dieticians so whether they all have access to it or it's a medical subscription I'm not sure but it's up for a revamp in 2015 but wasn't ready when I had my consultation I am going to be asking for the updated version once we move and I have a new list of questions as already I'm coming across things that are not listed.

[cmcginily in reply to jg2015]

Hi There

I am Christine and at stage 3b just!! eGFR 35 up from 31 at last clinic visit. I have ADPKD and have reached a stage of thinking that I must change my diet. I would very much like to see your booklet.

Best wishes Christine