Hello Nancy,

Start here: https://www.kidney.org/

You did not address me in your commentary, but I do have a few suggestions.

Give up meat and fish altogether. I do not eat dairy food at all.

If you want to eat popcorn, eat it with NO SALT. Not a little salt, no salt.

I soak rice to get rid of the arsenic, but I soak canned foods to get rid of the salt - and kidney beans are the only canned food I eat.

My story is like yours: my primary care physician did not tell me; I saw it on my patient summary. Every single step I have taken has been on my own. All my knowledge, and remediation efforts, have been a result of my own research. I don't mind doing that, but there is an ocean of information out there, and some voluntary guidance from your kidney doctor would be helpful and would inspire confidence that you are not making mistakes.

The first specialist I saw barely managed 15 minutes. They seem to feel that in Stage 3 you do not need to do anything, or change anything. This is ridiculous. That is when you need to get started with the changes that will slow down, stop or reverse your kidney damage. Why would you wait?

Early on, in that brief (ten-minute) meeting with a nephrologist, I got the advice that I would not end up on dialysis. Well, this is because of my age?

However, that does not mean I don't want to do everything I can to improve my kidneys.

Raised my GFRs, from the time I accidentally discovered I have the wretched disease (UTI medications), from 50 to 64-69 - depending, I guess.)

My experience with kidney doctors is that if you are in Stage 3, they don't offer a lot of guidance and I am aware that I need to look for a more involved physician. However, with the current method of referral's being required, that is not easy.

Most of what I have done, and learned, has been on my own. I am about to send off blood test results to Let's Get Checked, which gives me a GFR figure for the months between my first specialist appointment and my next appointment. I feel as if there is nowhere to go to get answers that will be individualized to your particular situation, since clearly, that did not happen with the first kidney doctor I saw. By the time I met the second kidney specialist, I knew the questions to ask. However, those have been my only encounters with kidney speialists. You are on your own.

I did fight my way to the hospital nutritionist, but you need referrals for that, rather than just making an appointment. You also want to know that the nutritionist is a kidney nutrition practitioner.

This blog is helpful and supportive. Gives you some insight into your condition and how to help yourself.

While medical care and knowledge is extraordinary, the personal touch, I believe, is less frequent in today's medical-care world. I am not a person who requires hand-holding, but I would like to feel as if I were not a number in the medical system, and that someone actually gave thoughts to how best to treat my specific ramifications of CKD after I left the office.

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