Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD)

@fiesty76 and @paiva, imagine my shock when I learned all of a sudden and with no discernible symptoms I was in Stage 4 and close to Five!

The doctor who told me was filling in for my primary, who had warned me several weeks prior that I was in mild renal failure we both considered to be age-related (I was 70 at the time.) Then primary had died and I hadn't been able to see a doc for several weeks. The substitute primary went back to her regular practice and it took awhile for me to find a new primary, who gave me all the info I asked for and immediately sent me to a neph.

But before I even saw the neph I put myself on a renal diet. By the time I saw the neph I was in the upper end of Four and when she asked if I'd ever considered a vegetarian diet I started one. I had been on a vegetarian diet before and liked it, especially since the only meat I ate usually was wild game and wild-caught fish. Now I eliminated those as well and to this day have not had any meat whatsoever.

Next visit found me up from close-to-dialysis Stage 4 to Stage 3b and both of my 2 nephs and my primary credited the diet as much as anything else we were doing. By that time most of my diet was vegan but I still call myself a vegetarian because I do eat free range chicken eggs and a VERY FEW processed items containing a TINY amount of milk product.

I have fluctuated between Stage 3b and Stage 4 depending on other health factors - a case of pneumonia put me in the hospital and dropped kidney function. Function improved after that but more recently a case of shingles set me back again but my poor lil ol remaining kidney seems to have recovered and I'm back in Stage 3b.

It's not unusual, I'm told, to have fluctuations in functio measurements anyway and lab results depend on time of day and lab doing the analysis so can vary. Thank goodness for Mayo's support groups! They've taught me a lot.

I'd like to share a couple more things. Through my research I've found that Roma tomatoes have far less "harmful" mineral content than other kinds of tomatoes and can be eaten in moderation (small amounts) without going over recommended daily renal limits of phosphorus, potassium, sodium, and protein.

My favorite grocer, Hy-Vee offers miniature steam-in-bag potatoes which also fall within "good" parameters. The potatoes aren't peeled or soaked so the nutrient values are reduced further even if you don't peel them but just cut and soak them first before cooking instead of steaming whole in the steam bag.

As a diabetic I had been told portion control is very important and on my personal diet that works ok because it's taste I'm after, not volume. I can have many foods that once were thought should be avoided, partly because growers and producers, etc., have altered the nutritional values of products, partly because manufacturers now offer reduced or zero sodium, for instance, in many canned goods which already have been "leached" of extra potassium via the canning process, and partly because I can happily eat a fourth of a cup of something instead of a more common serving of a half or whole cup.

It helps a lot to come here. It also helps to look at this whole kidney thing as an adventure. On receiving the sudden and shocking "you are almost to dialysis" diagnosis I actually came home thinking I would die within a week. Yet here I am four years later and basically thriving.

I guess this is my long-winded way of saying, "There is hope." And hope visits this group often.

@kamama94, As shocking as hearing "stage 3", was, I can't even imagine what hearing stage 4 on the way to stage 5 must have been for you! Oh my goodness! And am I remembering correctly that you are also a nurse? If so, as a nurse, you knew so much more to be alarmed about than one not medically trained and also showing no symptoms.

Like you, by the time I first saw a neph., I'd already started researching ckd because of a written report sent from a scan stating "renal disease" and was printing out lists of "ok and "to avoid" foods.

Still hard to accept that my pcp had also seen that scan report, had been sending me regular lab reports for years but only referred me to a nephrologist when I insisted on seeing one.

Neither pcp nor kidney doc mentioned diet; I was the one who made 4 requests before being referred to a dietitian. How fortunate you found a pcp who readily answered your questions and made your referral to the specialist.

Until the pre-diabetes diagnosis, the word "diet" had never had a place in my vocabulary. Smiles While I did make a sea change by revamping my diet, I am not strictly vegetarian and do very occasionally have a small bit of meat and dairy.

Really like your closing statement and certainly agree that: "There is hope." And hope visits this group often.

How long did it take for you to finally resolve the months long shingles ordeal? Good to hear from you and that more products are now available for kidney patients. How is your revised cookbook coming along? Are you taking special health precautions along with the virus specialists' published guidelines?

@fiesty76, I kept my face expressionless until I got home and cried into my dog's neck! i WAS TERRIFIED. At almost-75, I'm not ready to leave the party. To be fair to my former primary, my labs showed declining kidney function but the numbers were consistent with aging so the "surprise" certainly wasn't his fault. He died before my numbers tanked. New primary immediately referred me to neph who immediately ordered scans and we learned left kidney was completely blocked (I have a history of kidney stones - make that past tense had) and the left kidney was atrophied. To put it bluntly, pretty well gone.

I am not criticizing anyone with the next remarks, it's merely an observation from my own experience: many dietitians have no clue about renally "safe" foods, even some renal dietitians are surprised when I tell them there's a well-known potato chip company which offers "lightly salted" snacks or that my grocer offers a store brand of unsalted chips. (Yes, they're relatively high in potassium but ok in half servings OCCASIONALLY if this doesn't make one's daily potassium too high.) Or that Azteca makes a corn tortilla WITHOUT ANY PHOSPHATES! (They were delighted for me to mention their company name.) Again to be fair, my nephrologist also shops at the same store I have my groceries delivered from and was already aware of several renally ok items but was surprised to learn that small amounts of Roma tomatoes were ok also. (She's willing to learn, which tells you how good she is.)

As for the shingles, I still have post-herpetic stinging, itching and aching along the nerves underlying areas of skin where the blisters were and my docs tell me it could be a year or perhaps longer before this finally resolves. Some days are better than others.

The sequel to the original recipe collection is at a bit of a standstill since two or three companies whose products I use in the recipes have refused permission to name their brands so I've been challenged to describe some products without actually naming brands but with enough information that anyone who follows the recipes can look for similar products wherever s/he lives.

I am in nearly full quarantine on the advice of my nephrologist since I'm such high risk. No visitors except a neighbor couple who help take care of me (the hubby is my service dog handler and a CNA) and building maintenance personnel who mask and glove and handwash on the rare occasions they need to fix somethiing in my apartment. I have several layered cloth masks with filter inserts and wear one whenever I leave my apartment to go to the lobby for my mail or to my bank monthly or to one of my doctors. I carry disposable gloves and hand sanitizer in my wheelchair pack and wash my hands constantly and tend to throw clothes into the washer immediately after an outing.

TMI, probably, but you asked. <smiles at fiesty>

@kamama94, Hah, I didn't have to work at keeping my face expressionless at the ckd news...thought I'd been hit with a stun gun and simply froze in the chair...so kudos to you for maintaining a stoic facial expression.

While I've not delved into specific brands as you have and had only one visit with the "general" nutritionist, I can only report that his time with me was greatly beneficial. I'm sure that there are many, as with any profession like the differences between my docs and yours, who have less knowledge or willingness to share in more depth than we would wish. Think that is why becoming a a researcher and self advocate and activist for our individual maladies and symptoms is so very important.

Just darn regrettable that you are having continuing painful effects from your long bout with shingles! My daughter had to bouts, rather close together several years ago and was much younger than us. However, her second bout was the one that continued much longer with "residual" discomfort. She was in her mid-twenties at the time and will be celebrating her 50th this August. Thankfully, she's had no re-occurrences but I remember how debilitating her pain was despite her being a warrior who believes in mustering on and through challenges.

My long self-quarantine and heightened virus vulnerability is more due to asthma and chronic bronchitis. My pulmonologist cautioned that while others my age with serious health issues might become ill with the virus, if I were to get it, I would die...like you, I'm not ready to check out from the party! vbg

Quite the contrary, instead of TMI..."too much info"? I appreciate your taking the time to explain more fully and also want to thank you for these most recent posts because I've become more lax over these last weeks and need to do a review of diet. Like your precautions, I am taking similar ones whenever leaving the house. Thanks again for sharing! Take care.

What’s best bottled water to drink? Seems like most have sodium chloride and potassium. My mom is 90 and will be buying her water for her