ESRD wipes you out. Dialysis, even when it's doing a great job at cleaning all the unwanted toxins out of your system, also leeches important nutrients your body needs, like protein, for instance. While it is important for us to replace all those needed nutrients that dialysis removes, it's also imperative that we limit things like salt, potassium and phosphates and most ESRD patients also have to severely limit their fluid intake as well.
I'm one of those lucky people, for now anyway, who doesn't retain fluid. My dialysis nurse commented the other day that she's never had an ESRD patient whose kidneys still produced so much urine. My kidneys work really well at eliminating excess fluids, but they don't filter waste. That's probably one reason that Peritoneal Dialysis works so well for me.
However, like many other ESRD patients, I struggle to keep my protein levels up and keep my phosphate levels down. The biggest dilemma with this is that foods that are high in protein (nuts, meats, beans) are also very high in phosphates. Phosphate levels that are too high can be deadly. Too much phosphate in the blood can lead to heart disease, skin disorders, blood-flow problems, itching, and weakened bones. Lack of protein in the diet of ESRD patients has been directly linked to mortality rates in dialysis patients. In other words, not consuming enough protein can reduce your life-expectancy.
The nurses and doctors at my dialysis clinic are always preaching about phosphate levels, reminding patients to take their phosphate binders with every meal and snack, and expressing the importance of keeping protein levels up. Apparently, there are a lot of ESRD patients out there who neglect taking their binders on a regular basis. When I first started dialysis and was handed a huge bottle of binders to take with my meals I felt a little overwhelmed. First of all, the bottle itself was humongous, the pills are HUGE, and they wanted me to remember to take two of them every time I ate something. I did a pretty good job of it most of the time, and at my next appointment a month later, my phosphate levels were too low. Those pills really work. IF you take them. I confess that after that one lab where my phosphate levels were too low, I doubted the need for binders and slacked off on taking them. As a result my phosphate levels shot up. I know the importance of keeping phosphate levels down, but I still forget to take my binders sometimes. To help myself remember, I have put a bottle of binders on my desk at work, one on the end table in my living room, one in my kitchen and I keep one in my car. That way, I never have an excuse for not taking them whenever I eat. I can have a milkshake in the car (high in phosphate because of milk) without worrying about my phosphate soaring because I have my binders right there with me. It's working really well for me so far.
My biggest struggle is keeping my protein levels high enough. I don't particularly enjoy eating meat. I like eggs, but not every day. Those are two of the lowest options for consuming protein without raising phosphate levels. The other problem I have is that my appetite comes and goes with great irregularity. Some days I feel ravenous all day. Other days, I don't care to eat at all. Honestly, I feel terrible when I don't eat, but at the same time, my body is telling me that food is disgusting and I don't want it. I often have to force myself to eat. The whole time I'm forcing down that sandwich or salad or scrambled egg, I'm saying, "You'll feel so much better after you eat." It's true, I do feel like a new person once I've eaten, but it gets really old, having to force down your meals every day.
When you have ESRD and are on dialysis, you can't help being almost obsessed with what to eat or what not to eat. I've struggled with feelings of guilt, actual guilt, over eating a small dish of ice cream, or having a bowl of cereal with real milk for breakfast. Eating starts to seem like a bad habit, akin to smoking or alcoholism, when you live with the knowledge that everything you put in your body could potentially poison you. I'm glad I don't have to worry about fluid intake. I can only imagine how much more awful I'd feel if I had to stress over drinking a glass of water when I'm thirsty. My heart really goes out to other ESRD patients who have to live with strict fluid restrictions.
I wish I had some helpful advice to give to other folks out there who are struggling with these food issues, but all I can recommend is that you do your best. Take your binders, try to eat healthy and don't be too hard on yourself when you slip up once in a while. There is a lot of information and education online for ESRD sufferers, but very little helpful guidance on the issues we have with food, appetite and the mental toll that constantly worrying about such things can have on you.
Maybe I'm the only one out here who sometimes feels a little crazy over constantly thinking about what I eat and how it's going to show up on my lab work, or how it's going to further destroy my body, but I doubt it. It seems like, instead of one more article about how to eat right for ESRD, someone out there could address the concept of how to live your life with ESRD without letting worries about food consume us.
