By Lisa Baxter
It wasn’t until I received a sonogram that showed cysts around my kidneys that it really hit home that I had PKD too.
I knew I would have to go on dialysis someday, but I never knew how much dialysis would impact my diet. I love food! I used to be the one with all the snacks in the pantry. All that had to change if I was going to follow the rules of the dialysis diet.
I started dialysis in February 2004. Before I started, I was told ways to preserve my kidney function, doing things like lowering protein and cutting salt out of my diet. It wasn’t that difficult for me to do. But as soon as I started dialysis, everything changed and some of the advice was difficult to follow.
The biggest change for me was the water; I used to drink 10-12 glasses a day. Then they told me I could only have 32 ounces of fluid each day. That was hard! But you have to follow the rules, and if you don’t watch your fluid you can have trouble breathing.
I also had to really look at what I was eating. There are a lot of foods out there that can hurt you if you’re not smart. Things that are high in potassium can be harmful if you’re not careful. There’s phosphate hidden in foods too, and that can cause a lot of discomfort if you don’t watch your phosphorus levels.
My body reacted to these changes pretty quickly. I used to be overweight but when I changed my eating habits and began to exercise more to stay healthy, that made me lose a lot of weight. I also learned about portion sizes and how to be realistic with what I eat. Now I could tell you what a half-cup of something is by sight. I eat smaller portions now, and I feel better because of it.
I’ve been on dialysis for over 10 years, and the initial diet changes can be a challenge, but if you really listen to what your doctors and dietitians say, you can survive and thrive. It’s tough sometimes, but it’s livable and you don’t have to be miserable. There is good food out there for us! Make sure you follow the rules and stick to the diet plan and after the initial changes, your new dialysis diet will become another part of living a full life.
Tips for Surviving the Dialysis Diet
Being on dialysis, I could sometimes feel like a Gremlin – don’t feed me after dark and don’t throw water on me! People on dialysis will know what I’m talking about! Maybe you are new to dialysis, or having trouble making adjustments, but here are some of the tips I’ve learned after being on dialysis for over 10 years.
1) Get Your Family Involved. Teach your family, friends, and significant other about your new diet and how it impacts you. Sometimes it feels like you can go crazy on dialysis, you can get irritable or uncomfortable, so you have to make sure people around you understand what’s going on. They can also help you stick to your diet if they know what you can and can’t eat.
2) Be Honest with the Doctor and Dietitian. You have to develop a good relationship with the people in the dialysis unit. Get to know your dietitian, technician and doctor. You have to be honest and open, tell them exactly how you are feeling and be specific. I know sometimes you just want to say you’re fine when you’re not. Dialysis can leave you exhausted and can make your body go through changes, but you need to talk about all these things so the professionals can tell you whether it’s a result of dialysis itself, or something that can be changed by modifying medications or your diet. I like to write things down, so I can keep track of the changes I notice.
3) Know Your Dry Weight. The dry weight is where you are supposed to be at after a dialysis session. If you don’t know your dry weight, you’re in danger of being over or under it and that can cause problems. Under the dry weight will make you cramp up painfully or feel weak with low blood pressure. Over weight usually means you’re building up too much fluid and you can see yourself get larger, you can feel it in your body and it can become hard to breathe. A doctor can and will adjust your dry weight if you gain body weight. Remember, you are being monitored and weighed before and after to see what was removed after your dialysis session. I always keep track of my weight, even on days when I’m not going to dialysis.
4) Stick to a schedule. It’s easier to stick to a diet if you stick to a schedule. I won’t eat anything after a certain time in the evening because I know it will mess with my body’s balance. I plan out when I am going to eat and that helps me control what I’m eating.
5) Sometimes, You Have to Eat It! My dietitian tells me I have to eat more protein. I am not a big meat eater, so sometimes it’s hard for me to follow everything they say. But you know what, when I do it, I feel a lot better. So listen to the advice you’re being given and know that what you eat really has a big impact on how you feel.
6) Ace Your Report Card. I follow my report card precisely. The card has all my updated lab values on it and my doctor and dietitian review it with me on a regular basis. This is how I make all of my eating decisions. Sure it might be a holiday and you might feel like eating a piece of cake, but if your report card is not good, there is stuff out there that can hurt you. You have to pay attention, we all want something, if the report card says no you can’t have it, stay away!
7) If You’re Good, You’ll Find Time to Be Bad. I had a banana yesterday, and a few days ago I had some French fries, not a lot, but a few. You know why I could do that? I was following my plan! The dietitian looked at my numbers and said I could enjoy some of the things I normally have to avoid. If you work it right, and if your dietitian approves it, you can taste some of the foods you miss. Sometimes you want something different and when you are taking care of yourself you get to have that treat. Those things make such a difference on dialysis.
8) Stay Positive. Staying positive is a big part of maintaining a diet. If you don’t feel good, why would you want to follow a diet? You have to stay positive. We all know that bad things happen to good people but sometimes all you need to do is plan a trip for yourself, help someone else get through a tough day, or do something that you really enjoy and you’ll get that positive energy to keep going strong and thrive on dialysis and your dialysis diet.
Lisa Baxter has been a social worker for 18 years. She lives in Queens, NY.