Luxury: Eating What You Want

SURVIVAL TIP: Enjoy the luxury of eating as you like—as long as you are healthy. And be responsible in getting annual blood work to catch problems early.


Within days of receiving a kidney transplant, I could eat whatever I wanted! People on hemodialysis generally must limit fluid intake to 32 oz. (1.9 kg./4.2 lb.) per day and, as a result, limit sodium and spicy foods. Some patients must watch phosphorus, potassium, protein or blood sugar levels, as well.

During my first round of dialysis, I didn’t have to limit my fluids because I made a good bit of urine. And I was glad because anything that can be liquid is counted as fluid: ice cream, sherbet, sauces (tomato, alfredo), soup, syrup, gravy, gelatin, watermelon (mostly water, hence the name). And taking in fluid without expelling it can raise the blood pressure. That is the case with me now, but I don’t do well with limiting my fluids. I have always had a glass of Coke or sweet tea in my hand, so I gain about 3 kg. (6.6 lbs.) during the week and closer to 5 kg. (11 lbs.) over the weekend. (My tea intake increased as I worked Coke out of my diet. Water is ideal but provides no satisfaction to my taste buds. )

Excessive phosphorus causes calcium deposits in the skin and severe itching. Benedryl (generic dyphenhydramine) can take the edge off of itching, but phosphorous limitation is crucial to maintaining healthy levels of calcium in the bones. Dark colas, coffee and chocolate are high in phosphorus. Most processed foods are high in sodium and phosphorus. Phosphates are used as preservatives, so if you find any derivative of “phosphate” on the ingredient label, limit or remove it from your diet. Bummer. I took phosphorus blockers the first time and again now. Fortunately, the one I take also contains a calcium supplement. The capsules are large, but swallowing one became a part of every meal. Taking the pill is no problem when I remember; however, because I have a flexible schedule, taking the pills is a problem only in that I forget to take them.

After the transplant, I had to take even larger tablets to supplement my phosphorus. So I asked what I could do to avoid taking pills about the size of the tip of my thumb. The doctor asked if I could drink skim milk. Sure I could. Turns out, skim milk is fortified with phosphorus, so he encouraged me to drink a glass of skim milk instead of taking the supplements until my body balanced my phosphorus levels. So i consume no dairy products now, or small servings.

Too much potassium speeds the heart rate. Grilled vegetables such as bell pepper, zucchini and asparagus are tasty side dishes with lower potassium. You’ll learn which foods are high in certain nutrients. The crazy thing is that potassium is found in orange juice, bananas, cantaloupes and sweet and Irish potatoes, avocados, mushrooms, and tomatoes – so pizza IS a NO NO! Everything I was taught to eat as part of a nutritious meal—even a veggie pizza—is high in potassium. I had to limit potassium the first time, but not now. My labs are within range. Again, there are minor detectable symptoms with high potassium. When mine was high, I never felt my heart racing.

I had to limit my protein the first time, but not this time. I don’t know why. Now I need protein but avoid nuts and legumes because of the high phosphorus content. When my labs (albumin is an indicator of protein levels) were low in 2012 and 2013, the nutritionist offered a low protein bar, drink, or “ice cream”. Of course it’s not ice cream, because dairy must be limited or supplemented with a phosphorus blocker. The short-time nutritionist also offered protein bars. As I turned out, “Oops! We don’t have the protein bars.” So we chose from a liquid that is called grape but tastes like the laxative I took as a child or freezer-burned “ice cream” in chocolate (also prohibited), vanilla or strawberry. Oh, but we don’t usually have all of those flavors. Wow. What a let down. First ice cream that’s not ice cream, then chocolate that’s not chocolate, and last, it’s freezer burned. Fortunately, after several months, they changed brands, and the newer frozen substance tasted better. And my numbers have picked up, making that unnecessary calorie intake.

Thankfully, I don’t have to contend with diabetes. My recent labs said so! But remember to have blood work annually. That is the only way to find you have diabetes and kidney disease before you have extreme symptoms such as thirst and frequent urination or worse, no urination. My mom always warned me before we left on a trip, “try to tinkle. Even if you don’t think you have to go, try.” I say a prayer of thanksgiving every time I urinate.

If you or someone you care about is facing dialysis, please share your experiences and concerns. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with dialysis?



About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
This entry was posted in dialysis, kidney failure, nephritis, phosphorus, potassium, recovery, transplant, Uncategorized and tagged , , , , . Bookmark the permalink.

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