Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

Did you find- good support group? Trying to get more information to help a family member at stage 4 I care for improve their diet or find other ways to improve kidney function.

@ococean09 Are you looking for an online support group for your family member? Try rsnhope.org, which has twice monthly Zoom meetings. There are people from all over the country, and there are different types of meetings that happen virtually that have to do with diet, exercise, creative endeavors, book club, etc. The organization was founded in 1993 by Lori Hartwell, who is a four-time kidney recipient.

Beyond that, you can find helpful information from the National Kidney Foundation https://www.kidney.org/nutrition;
DaVita Kidney Care: https://www.davita.com/diet-nutrition; and Fresenius Kidney Care: https://www.freseniuskidneycare.com/recipes-and-nutrition

Do you have any other questions for me?
Ginger

Google Davita.. it has so much valuable information and recipes.

Hello,
Glad I found this thread. I've been at stage 4 since March 2023. I was misdiagnosed by my local nephrologist and was able to get an appt. at Mayo in Rochester. Then registered with a new nephrologist locally. My eGFR is stable and moves from stage 3 (33) to stage 4 (25). The specialist from Mayo and my new nephrologist say this is normal. Fluctuating eGFR, as long as it's stable within a reasonable number is fine. Both Drs say many people live long, productive lives at this eGFR. I have no symptoms. My disease makes me urinate a lot and my urine is very clear. I have low protein, often none, every test is different. My disease is nephrogenic diabetes insipidus. I do not completely understand it but it's from being on lithium for 40+ years.

Every kidney disease is unique to the individual. I read stories that vary so much from person to person. I guess the best thing to do is have a positive attitude. I lived in worry and concern for 7 years with the wrong diagnosis. When Mayo told me that dx was wrong, I was elated, but I still have kidney disease. It's just a different one that does not destroy the kidneys as ADPKD does (that was the wrong dx).

wow you give me hope, stage 4 for 24 years, amazing. i am 80 no diabetes..had chemo maybe a cause, but pharmacy said cholesterol meds caused my kidney disease, try to follow diet, have onion soup daily, supposed to be great for kidneys, scary thing to me some days, not as tired the days i have pool exercises

Hello,
I’m 77 3/4 years with type2 diabetes and stage 4 CKD. I’m new to this support group. Since my sodium, potassium and phosphorus levels are normal, is it okay for me to use a little sprinkle of light salt by Morton’s only when cooking dinner meals? FYI: I have been doing that for dinner meals prep.

@westutx A dietitian can probably best answer your question by looking at your complete diet program history along with your labs. One thing to note is that our bodies need those 3 ingredients in our lives, but not one of them in excess. Assuming a "little" does not be excess, it probably may be OK, but your dietitian knows best.

If you have been doing it, and your levels are remaining good, then maintaining those levels is the goal .
It's all a balance!

@westutx Welcome to Mayo Clinic Connect! All of us who deal with chronic kidney issues sometimes struggle with exactly what we can/should do with our diets. Some may say, "everything in moderation". For me, having something in moderation can lead to overindulging; my nemesis is pepperjack cheese, which I dearly love!

How about trying another take on adding salt to your dinners, by using herbs and spices in place of salt? I use a salt-free seasoning blend that has garlic, pepper, lemon, paprika and several other tasty components. I don't miss the salt at all. In fact, for me, celery now tastes salty!
Ginger

I would love to hear the complete recipe or the name of your salt replacement seasoning.