“How does your food taste?” A simple question to most. A life-changing question to me. “Terrible” I said with tears in my eyes. Somebody knows. Somebody understands. That was a question asked by the nurse at my first nephrology appointment. For weeks I had been so sick, trying to figure out why food was tasting godawful. Forcing myself to eat plain pieces of bread, so I had something in my stomach, was becoming a daily occurrence. Food with any kind of spice was out of the question.
I have Polycystic Kidney Disease. Cysts form in both kidneys, making them grow large and ultimately stop functioning. I received the diagnosis years ago but didn’t realize the symptoms of high blood pressure, extreme fatigue, vomiting and my aversion to food were a result of the disease taking hold of my body with a vengeance.
I received a well organized pile of papers which included lists of acceptable foods to eat and foods to avoid, along with dialysis friendly recipes. It all seemed very overwhelming.
During the visit, the doctor informed me dialysis must begin right away or I would get even more sick. The question “Am I going to die?” had to be asked. The doctor assured me dialysis should save my life, with kidney transplant being the hopeful end result. I chose hemodialysis to clean my blood and remove fluid from my body since my kidneys were not able to perform those functions on their own.
While at dialysis I met the dietitian. She explained how important having a healthy diet and limiting fluid intake would be to the success of my treatment and overall health. A typical dialysis diet would be low sodium, low phosphorus, low potassium, with attention to protein. Forty-eight ounces or less of liquid per day was also in my dietary ‘prescription’. I received a well organized pile of papers which included lists of acceptable foods to eat and foods to avoid, along with dialysis friendly recipes. It all seemed very overwhelming.
As I started to regain my appetite, I knew what I had to do to. Changing my eating habits for the better was a positive decision I had to make regarding my healthcare. I’d follow the recommendations and search the internet for aid in this part of the journey. But I still had questions.
How will I be able to manage low salt? What about pickles and chips? This ended up being easier than I thought it would be. Since food had previously tasted so bad, when I did begin to eat I didn’t crave salty foods anymore. I purchased Mrs. Dash seasoning and other herbs and spices such as fresh garlic and rosemary in place of salt. Bacon and brats (shout out to Wisconsin!) are out but turkey off of the bone is great for sandwiches. Sun chips are my go to if I need some crunch but I limit myself to a few chips instead of half of the bag. Eating low salt also helps me crave less liquid because thirst is not such an issue.
What about cereal with milk as my favorite night time snack? I was relieved to find cereal is fine when made from rice or corn such as Rice Krispies or Corn Pops. Milk has high potassium so I stick to a half cup of milk per day with the cereal. Remembering to count this as part of my liquid intake is a lesson I had to learn about effective portion control.
Can I have fast food? I have a cheat day once a week. Tacos or pizza are okay for me as long as I eat well the rest of the day. Recently, on the way back home from a family reunion, we stopped at a gas station with a fast food establishment. Everyone ate fast food but I had fruit that filled me up. I had my cheat day the day before, and I didn’t want to fall off the wagon so to speak.
How will I know if my eating habits are successful? Each month blood is drawn to check levels. I am pleased to say my labs have been excellent! I can’t wait to see those googly eyed dinosaur stickers that don my document, showing the world that I worked hard!
So the next time someone tells me to “Take it with a grain of salt”, I’ll correct them while thinking of all my fellow dialysis friends and say, “Take it with a grain of Mrs. Dash!”
Being diagnosed with Polycystic Kidney Disease has tried to slow me down but I keep pushing through dialysis. The hopeful end being a successful transplant. As a trainer in my company I love meeting new people. I’m married with four beautiful children. Reading, playing games and watching movies next to the dog and two cats is where you’ll find me!
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