All children have to start dialysis for the same reason; their kidneys are no longer doing an effective job. But why the kidneys are not working or how long someone needs to be on dialysis is different for each person. We expect that starting dialysis treatments will be challenging for all children and families. Many kids starting dialysis feel sad, scared, angry or nervous. We know that you will be able to adjust to dialysis, and we are here to help you in any way we can. Below are some questions you may have on your mind.
Some patients receive dialysis through a catheter. This is a small Y-shaped plastic tube which has been placed in the chest by a surgeon to allow a patient to be connected via longer tubing to the dialysis machine. Other patients have a different surgical procedure. This is when a graft or fistula is created in the blood vessels of one arm of the patient. This kind of access, which is underneath the skin, allows kids to bathe and swim, while those with catheters have to be careful not to get their catheters wet. A graft or fistula can also reduce the frequency of infection. Patients with grafts or fistulas must have needles placed into the arm at each dialysis treatment, and many use a topical anesthetic, or numbing cream, on their sites to reduce the discomfort of the needle sticks.
Absolutely, and that's normal. Many children worry about what dialysis will feel like, whether it will hurt, and how they might look or feel after dialysis. It is normal to be scared of needles at first. You might be nervous about how you will get along with the other patients and the staff. We have a whole team of people who will help you and your family make the transition to dialysis. The physicians, the nurses, the social worker and the child life specialist will help and support you the whole time you are being treated here. We hope you will ask about anything making you nervous. Your nurses will be able to answer most questions. But if they do not have the answers you need, they will help you figure out who does! If asking questions is hard, it's OK to have a family member ask for you.
Yes! Going to dialysis may sometimes interrupt your plans. But when you are at home, we hope you will do many of the things you have been doing, like going to school, going to the movies or the mall, and playing outside. You should talk with your doctor to see if there are any activities you should not do (like some contact sports).
It is important to keep in mind that sometimes you might not feel as strong as you did before. You may become tired more quickly. You and your family might need to be more flexible with your plans than before you started dialysis. Especially in the beginning as you get used to treatments and how you feel afterwards, it may be helpful to plan lighter activities on dialysis days.
Kids tell us that sometimes their friends wonder if they will "catch" kidney disease. Others are asked questions about how they got their illness. It is natural to feel uncomfortable or scared when telling others about your illness for the first time. You may wonder how much information to give or the best way to describe things. The child life specialist on our team is good at explaining things like kidney disease and dialysis to kids. They can help you figure out how to explain it to your friends or to other people who may ask you questions.
It is very important that you get a full treatment each and every time you come to dialysis. If you need help getting your mind off your treatment, there are lots of things you can do! You can bring things from home, you can work on your homework, read a book, or watch TV or a movie. Still bored? Our child life specialist is an expert in that area! Just ask, and you'll have more suggestions for activities than you have days on dialysis!
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Reviewed by: Bernard S. Kaplan, MB, BCh, FAAP
Date: July 2005