Learning to Live with CKD: One Couple's Journey
Our Journey-Part 1
My husband was diagnosed with chronic kidney disease (CKD), stage 3, about twelve years ago. His age was 66 at the time, strong, healthy, hardworking, and with no thought of retiring any time soon. He owned and drove an eighteen-wheeler. He ate truck stop food, which was loaded with salt and grease, several days a week. His favorite meals were a big cheeseburger and fries or a huge breakfast with all the trimmings. He had driven a truck for decades, and smoked, drank coffee constantly, took his blood pressure medicine only now and then, and slept irregular hours. The doctor who did his annual physical for his license finally refused to recertify him unless he had a 24-hour urine done by his family physician, because he continued to show protein in his urine year after year and just blew it off as “nothing wrong with me”. That started our journey into the world of kidney disease.
When we walked out of the nephrologist’s office the first time, we were both stunned and confused. We looked at each other and we were so shaken, we were at a loss for words. Everything we had heard was a blur, and we didn’t know where to begin. He had a return appointment soon for more testing.
In the meantime, I read the printed information the doctor had given us and learned diet is important. However, it was so confusing. I have cooked since I was a child and we raised a large family on balanced, nutritious, cooked-from-scratch meals, but everything I was reading about meals for CKD was the opposite from what I’d always believed. I had him finally eating whole wheat bread, and the kidney diet said white bread? What? Beans are a no-no? But one of his favorite trips was when he went to Louisiana and ate a big platter of Cajun red beans and rice with smoked sausage and ham and cornbread. He would often stop at a grocery store and buy bread, thick-sliced bologna, a big chunk of sharp Cheddar cheese, a jug of milk, and to keep it “healthy”, grapes, bananas, and V-8® juice. We were so overwhelmed and uninformed.
His nephrologist arranged for us to meet with a renal dietitian, and while I had some questions, for the most part, I didn’t even know what to ask. My husband was not terribly interested, because, he kept insisting, he felt fine, and this was not necessary. She taught us how to estimate protein, urged him to leave off at least part of the salt, told him he should take a calcium pill with each meal or snack, and gave us lists of foods to limit, or avoid altogether. Of course, many of our favorite foods were on those lists. She encouraged exercise and limiting the coffee. I tried to stick with the guidelines when he was home, but it was very difficult for him to find acceptable meals on the road. Truck stop meals are not only usually full of non-kidney-friendly choices, but truckers don’t eat where the food is good; they eat where there is a parking space for their big rig. I tried sending fruit, but it would come back home uneaten.
We coasted along like that for a number of years, growing pretty lax as time went on. We both love milk, and we drank big glasses a couple of times a day, often accompanied by peanut butter crackers at bedtime. He had been re-diagnosed from stage 3 to stage 2 CKD, and it gradually slipped back to stage 3, then 3-B for a long time, and then slipped slowly to stage 4. He remained there for at least two years or more.
Check back to read more about our journey with CKD and how we’re dealing with the diet and meal planning.