Frustrated and Confused re Eating with CKD3

@nscappa Ah, the never-ending [it seems] dilemma of CKD at any stage, and how we eat!

My breakfast, or first meal, often has a hard boiled egg, some fruit, maybe a slice of toast. Sometimes it is a salad. Other times leftovers from dinner. Sometimes some Greek yogurt. Sometimes a protein shake. I rarely eat a lunch. For me, small amounts of food during the day. Some hummus and celery or apple. Depending on my system, maybe a bit of pepper jack cheese. Finding a meal that appeals to me later in the day, can be a challenge. There are quick protein sources available for me, usually chicken, fish, peanut butter.

I do limit potatoes, beans, tomatoes, bananas, phosphorus from dark sodas. Finding good sources of proteins is critical for me. Following a renal diet now for over 20 years, it is more a habit and lifestyle. Some may say "everything/anything in moderation". For those of us who have food issues, and can overindulge at the drop of a hat, moderation may not be in the cards. Once in a great while I will allow myself to go whole-hog on a bad choice. Knowing there will be repercussions it is done mid-month when blood work won't be for a couple of weeks LOL

It's not easy to watch what we eat.
I will be interested to read others' responses here!
Ginger

Hi Ginger,

I wasn't aware how long you have had CKD. You must be a pro by now. I'm concerned about the amount of portions. I love beans, some potatoes (small red ones which I bake), fish (only one piece), spinach lately (too much potassium?). I love it with eggs. I know it is recommended to use just the egg whites, I will need 70 eggs just to get enough to make an omelet. : ) I'm frustrated. You are very strict so you must be keeping your GFR results good. My last one was 48 which I wish were higher. My neph. now has me on a pill I guess to help absorption. I'm afraid I'm eating too much of things. My omelets (which I love) are not what you would call small. I eat peas, oatmeal (probably a no-no) the one with high fiber. Coffee, maybe 2 cups a day and I am trying to up my water intake to 60 oz. but sometimes it's a bit tough. I read beats are good for you, tofu, yogurt (is flavoring okay), some popcorn. Thanks for your timely reply I trust everything that you tell me. I will wait and see if I get any more replies. For breakfast I usually just have 1 piece of Tuscan Pane bread (200 mgs. of salt) with smart balance. I will persevere. : )

I too have CKD. My nephrologist says it is stage 4. The GFR has bounced between 14 - 42 since around 2011. It is currently in the low 30’s. @gingerw is a pro! She would be the first to say that the overall trend of the GFR is more important than any one lab test result.

Regarding eating, there are some things to be aware of and keep an eye on. These are tested in renal panel labs and include things like sodium, potassium, calcium, phosphorus, protein ….. My nephrologist reviews these labs and sets ranges that I should stay within. He says that I should “eat for the labs”. A renal dietician can identify the foods, values and portions that are relevant to those ranges. I am also diabetic so I have to consider requirements for that too. I was blessed to find a provider with renal and diabetes expertise plus she respected my personal likes and dislikes to help me customize an eating plan to meet my needs.

There is a longtime Mayo Clinic Connect member @kamama94 who also has CKD and diabetes, has been on dialysis, is a retired nurse I believe and retooled a bunch of recipes to make them kidney friendly. She also created quite a few more and put them into a book that she shared with Mayo Clinic Connect.

@nscappa I was first made aware of lowering eGFR values about 20 years ago. I immediately went on a renal diet, even though my doctor said that wasn't necessary. In 2015 they finally came up with the cause of my CKD, which is an ultra-rare disorder. I truly believe that keeping to watchful eating helped me keep that value up for as long as it did. In Sept 2022 I started dialysis at 14% eGFR, and continue on it today.

As @cehunt Cheryl mentioned, those things that we need to watch for are definitely "eating for the labs". I have blood taken twice a month, once from the PD clinic, another from my oncology team. I keep a spreadsheet to help track everything; it includes the date and where the labwork was pulled. For me, good protein is a must, as dialysis seems to deplete it faster. If you have access to a renal dietician, ask for the optimal values for you.

You got this! And, we are here with you.
Ginger

Thanks for mentioning the recipes. Please do caution everyone that some - if not many - of the nutritional values shown in my recipes may be out of date since manufactures frequently change amounts of such things in their products so ALWAYS read labels before purchasing/using.

I was less fortunate than some in that the so-called dietitians in my area didn't know much about renal diets so I had to come up with my own. I revise the recipes stored on my computer almost daily due to the constant changes by producers and manufacturers but I cannot access the pdfs or documents online at Connect so it's doubly important for people to check the amounts in the recipes against newer amounts on product labels.

Ginger, I am so sorry to hear that you are dealing with dialysis, it must be so difficult for you. You are always to gracious to me with all your information which I so appreciate. Sometimes I wish I could have my bloodwork done every three months, but I know that will not happen. It's tough waiting for 6 months to see where your GFR number stands. I have a couple replies so I will see what they mention.
TTFN (Ta Ta for now) : )

I just now saw your comments. You are dealing with quite a lot and I really hope for the best for you. Unfortunately, the links didn't work but I would like to see a dietician because I have so many questions even now. I was diagnosed about 3 years ago and for the first year I was not told that I had kidney disease. I saw it on my after-visit summary. I guess GP's don't get too excited about it. Really! You are spot on re Ginger, she is just great and so caring. This site is wonderful and I truly appreciate all of the great comments that I get. Thanks to all of you!

Hi all. I agree it is tough to digest all the dietary info regarding CKD. I recently found renal dieticians listed for every state on the American Kidney Foundation website. It looks like many of them practice telehealth which is a blessing if you live in a rural area hours from their city practices, as I do. I’ve noted there is a lot of outdated dietary info online and even still offered by primary care doctors. Trying to follow only the latest research based guidelines when possible. Wishing you all the best.

@nscappa could your GP refer you to a nephrologist? If so, s/he might order more frequent bloodwork and could also recommend a renal dietician to answer your nutrition questions. @flow also had a good suggestion of finding a renal dietician through American Kidney Foundation.

Hi, I'm from Mongolia. I'm here for the first time. My son (24 s) has kidney disease. Frequent bloody urine and protein loss. Now that the creatinine is high, what medicine can I take to reduce the creatinine? Please help