Pediatric

Teenagers with chronic kidney disease: Living a full life

Being a teenager brings about many changes. Going to high school and figuring out who you are and what you want to do with your life are big issues. If you are a teenager who has chronic kidney disease, you’re dealing with even more than your peers. You probably have a lot of questions about kidney disease and how it’s treated. Here are some suggestions that can, hopefully, answer some of your questions, provide useful tips and help you understand your condition.

Get all the facts

As the patient, it is important that you understand your illness. Be sure to ask your parents, doctors and other caregivers any questions you may have. Sometimes it’s scary to think about having a serious illness. When someone is first diagnosed with chronic kidney disease — or any other serious illness — it is only natural to feel anxious. Realize that it is normal to feel the way you do.

Let your parents know you want to discuss your illness. Sometimes parents want to protect their children so much they shy away from talking about what’s happening. They may not realize that fear of the unknown is worse than knowing the facts of your illness. Tell them your concerns and ask questions. Chronic kidney disease affects your whole family. Sharing feelings — even negative ones of fear, sadness and anger — can actually bring you closer to your parents, siblings and other family members.

Talk to other kids

Many teens find it helpful to talk to other kids with kidney disease. This is a good way to get tips for dealing with what’s happening to your body and the treatments you’ll need. There are many summer camps available for kidney patients, and they’re great places to meet kids just like you. Ask your health care team for more information on camps in your area.

When you feel ready, talk with your friends about your kidney problems. Let them know that you’d like them to treat you the same as they always have, and to keep being your friend. Encourage your friends to ask questions and help them understand your condition and your feelings. If you have to miss school or go into the hospital, invite your friends to come visit you.

Can I still play sports?

With your doctor’s OK, get regular exercise. Go outside and take walks. Consider some form of strength training, which can help build strong bones and stimulate muscles and nerves to fight off restless leg syndrome and other conditions associated with kidney disease.

If you have participated in sports in the past, you may be wondering if you can still play baseball, ride horses, play soccer and do all of the activities you enjoy. Talk to your parents and your doctor. Together you can make a decision about what sports and other activities are possible for you to enjoy.

What if I need dialysis or a transplant?

Learning that you need dialysis or a kidney transplant can leave you feeling overwhelmed, but there are things you can do to feel more in control. It’s good to remember that these treatments will help you  enjoy all your normal activities over time. To better understand your treatment:

• Make a list of questions, and then go through them with your doctor.

• If you are to start dialysis, visit the dialysis center where your treatment will take place. Having a chance to see the dialysis machine and meet the staff at the center ahead of time will make your first treatment feel more comfortable.

• Ask the staff in what ways you may participate in your treatment.  For example, some centers offer to teach you how to set up and run your dialysis machine, or how to insert your dialysis needles into your vascular access yourself.

• Ask your physician for a referral to a transplant center, then make an appointment to meet the staff. Write down your questions and take the list with you so you get all the information you need.

• Talk to other kids who are on dialysis or have had a kidney transplant. Your medical team can help you and your parents get in touch with other families who have had similar experiences.

Growth, sexual development and physical appearance

In people with chronic kidney disease, physical changes vary from person to person. Because of fluid loss or retention, you may see changes in your weight. Depending on how old you were when you developed kidney disease, it may affect your growth. If you were young when kidney failure occurred, you may be smaller than other kids your age, and you may be developing sexually at a slower rate. This is especially true if you are on dialysis. Teenaged girls with chronic kidney disease may have irregular periods or not get their periods at all.

If your growth has been affected by your illness, your doctor may recommend dietary changes or food supplements. Depending on your condition, your doctor may also prescribe medications to stimulate growth.

You may notice changes in your skin, such as your skin tone becoming paler or slightly yellow. It may also be dry or flaky. If you have a dark skin tone, this dryness can result in an “ashy” look. Daily cleansing and moisturizing will help your skin look healthier.

Some medications may have side effects that can change your appearance, causing acne, weight gain and puffiness of your face and neck. Make sure you bring up these concerns with your health care team.

Looking to the future

Having chronic kidney disease changes your life, but you shouldn’t feel that your future is over. If your doctor has told you that you’ll need dialysis or a kidney transplant, it is important to remember that lots of other people have had similar experiences and are living full lives — attending college, getting jobs, marrying and pursuing their passions.

As one teen with chronic kidney disease said, “I may have an illness, but that doesn’t mean I can’t have a life!”

Parenting a teenager with kidney disease

Living with teenagers can be trying under the best of circumstances. If your teenaged son or daughter suffers from chronic kidney disease, you may feel overwhelmed, worried and just plain stressed out. Here are a few tips to help you cope:

• Talk frankly to your teen about his fears and concerns. Chronic kidney disease affects the entire family, but, like any crisis, it can be an experience that draws family members closer together. Communication is key to coping during this challenging time.

• Be aware of your teenager’s diet and growth. Your teen’s physician will guide you and your teen in choosing the diet that is best for their needs. Diet changes may include limiting sodium, dairy products, protein, and foods high in potassium. Your doctor may also advise that your teen take nutritional supplements to ensure optimal health.
  
• You may find that you have difficulty disciplining your sick child. All kids need limits, even those dealing with kidney disease. Refrain from giving in to your teen’s every wish. Try to maintain a normal routine at home as much as possible. Your other children will surely notice if your son or daughter gets preferential treatment.

• Remember that you are not alone. There is an entire medical team ready and able to help you make the tough decisions about your child’s care. Support groups can also be helpful, since they give you the chance to communicate with others who have walked in your shoes.