How do I prepare for my child's transplant evaluation?

What is the goal of the evaluation?

What will happen during the evaluation process?

How do I prepare for my child's transplant evaluation?
Your child's doctor will let you know when it is time to meet with a doctor from the transplant team. He or she will ask you to call us to start the process. Call us at 800-328-5465. We will then send you a referral packet. At that time, you will need to do the following:

• Read the entire referral packet. If you need help reading or understanding the information, you may call the Transplant Center.
• Complete the Transplant Application in the referral packet. Return it to us in the envelope provided.
• Contact your health insurance provider to ask about your child's coverage. Explain that your child will be having a kidney transplant evaluation at the University of Minnesota Amplatz Children's Hospital. This is also a good time to discuss the costs for home care and medicines after the transplant. (Your social worker will talk to you about this during your child's evaluation. A financial representative will also be available to talk with you if you have questions about your insurance coverage.)
• Complete the Release of Information form in your referral packet, and return it in the envelope provided. This will allow us to obtain your child's medical records. Once we receive your child's records, we will schedule the evaluation. If your child is very sick, he or she may have to stay in the hospital during the evaluation.

What is the goal of the evaluation?
The goal of your evaluation is to decide if a kidney transplant is the best treatment for your child. We will:

• Check for problems that might occur during or after your child's transplant
• Gather recent medical information for the surgery
• Review and adjust your child's diet and treatment so that he or she will be in the best possible health for the transplant
• Teach you and your child (if old enough) more about kidney transplant surgery, after-care and what to expect while waiting for the transplant
• Allow you to meet the transplant team
• Discuss your child's kidney transplant options

What will happen during the evaluation process?
In most cases, an evaluation takes two to three days. It will consist of several doctor and clinic visits. You will also attend a two-hour pre-transplant class. We urge your family or close friends to come with you. You will receive a lot of information, so please take notes and write down questions. If you do not want to start or continue your child's evaluation, please let us know.

Doctor consultations
You will meet the transplant team doctors. Your child's transplant coordinator may be with you during some of these visits.

• The transplant nephrologist (kidney doctor) will review your child's records and complete an exam. If the doctor thinks your child might need a transplant, your child will see him or her regularly. The doctor will do an exam, then help manage your child's disease.
• The transplant surgeon will explain the operation, possible risks and donor options.

Your child may see other doctors as well, depending on your child's health history. Feel free to ask questions at any time.

Blood tests
Your child will have many blood tests, including:

• Blood type tests
• Tissue typing. This is used to find a matching donor kidney.
• Crossmatch testing. This test will show if your child's body will accept or reject a kidney from a given donor. A negative crossmatch is good – it means your child's body will likely accept the kidney. A positive crossmatch means that your child's blood reacted to the donor’s blood sample and your child's body will likely reject the kidney.
• An antibody level test. This tells us how active your child's immune system is.
• Standard tests to measure your child's overall health.
• Pregnancy test for girls of childbearing age.
• Tests for viruses such as hepatitis, Epstein-Barr, cytomegalovirus, varicella and HIV.

Nutrition consult
A dietitian will check your child's height and weight, then review your child's blood work. The dietitian will counsel you on how to help your child eat a healthy diet and maintain a healthy weight. Please tell the dietitian if you would like to meet with him or her again.

Scans and X-rays
The following are scans and X-rays that your child may have during his or her evaluation:

A chest X-ray

An ultrasound --This test uses sound waves to look at parts of your child's body. We may use it to look at your child's gallbladder, kidneys and blood vessels.

CT scan--Your child may have this test if he or she had cancer or if earlier test results aren’t normal. Your child will lie on a table that moves into a scanner (a big machine with a hole in the middle). The scanner will take a series of pictures of the inside of your child's body. When we look at all the pictures together, we will have a 3-D (three-dimensional) view of your child's organs and blood vessels.

Heart consult--You will meet with a heart doctor (cardiologist). He or she will decide which heart tests your child will need. These may include:

• EKG (electocardiogram). Patches on your child's chest will record his or her heart’s rhythm.
• An echocardiogram. This is an ultrasound of your child's heart. Sound waves create an image of the heart on a video screen, showing us how your child's heart works.

A stress test--We will give your child medicine to increase his or her heart rate. Pads on your child's chest will record the heartbeat. This tells us about the blood supply to your child's heart.

Breathing  tests--If your child has ever had lung problems (such as asthma), he or she will need special breathing tests (called pulmonary function tests).

Social services consult--You will meet with a social worker to discuss support services. He or she can help with changes that you and your family may need to make in the short-term. Your social worker can also answer questions about Medicare and discuss other financial concerns.

Financial consult--A financial case manager will discuss the costs of both the transplant and the medicines needed afterward. He or she will help you understand your insurance—what it will cover and what it won’t.

Psychologist--Your child may see our psychologist if your child has a learning disability, has had mental health concerns in the past, or had a kidney transplant before.