Supporting your child after a kidney transplant

Medicines and infection

After your child’s kidney transplant, they need to take medicines. These include immunosuppressants. These reduce the risk of their new kidney being rejected, but they also weaken the body’s resistance to infection.

Your child has a greater risk of getting infections. This includes common infections such as a cold, as well as urine and chest infections. It is important to let you transplant unit know if your child is unwell with symptoms of fever, cough or diarrhoea and vomiting. Your child may be more ill than usual, or for longer, with an infection.

Safer eating

Because children taking immunosuppressants are at greater risk of infection, they need to take special care to avoid infection from food.

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Healthy eating

Before a kidney transplant, many children have restrictions on what they can eat and drink – for example, much less of the minerals potassium and phosphate, which are found in many foods. They may also have a poor appetite, feel sick or vomit. Some children use a feeding device – some or all of the nutrition they need to grow and develop can be given through a tube or button.

After a kidney transplant, most children feel better and are able to eat a diet that is more varied. Some children need to continue with tube feeding for a while until their appetite improves. While children are taking steroid medicines, especially for the first few months when the dose is high, they may feel more hungry than usual. It is important that your child has a healthy and balanced diet – and that they avoid eating too much, and limit the amount of fat, sugar and salt.

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Fluids

Before a kidney transplant, many children need to restrict their fluid intake – drinking less water and juice and eating fewer foods with a high water content, such as soups.

After a kidney transplant, your child will need to drink more fluids. They may be given a minimum amount of fluid to drink each day.

Follow up appointments

All children need follow-up appointments at the hospital or clinic, to check for any health problems. These will continue for the life of the kidney transplant and beyond. It is important to go to these appointments. You will also have the opportunity to ask any questions. At these appointments, your child may have:

  • their height and weight checked
  • a physical examination
  • urine tests – to check for blood, protein and other
  • substances in their urine
  • blood tests – to check the function of the new kidney, and levels of the immunosuppression treatment
  • their blood pressure measured.

If your child has any problems with the transplanted kidney, a kidney biopsy may be recommended. This can give more information about what is causing the problems. It is usually done on a single day. Initial results are available from one to three days but more detailed analysis may take further time. A tiny piece of the new kidney is removed from the body with a needle, and examined under microscopes.

Special medicines are used so your child does not feel any pain and can sleep through the procedure.

Supporting your child

This can be a difficult and stressful experience for your child and the whole family, including other children. You and your child will learn more over time about how to help manage and live with a kidney transplant.

Your child’s healthcare team is there to help you. They can provide support with your child’s education, accessing financial benefits and planning holidays around tests and treatments.

Support from the transplant team

Your child’s kidney transplant team is there to help you. Some of the ways you and your child can get further support include the following.

  • Education: your child’s schooling may be interrupted, especially if your child has to go to the hospital frequently for tests, and around and after the operation. Your hospital can arrange for a teacher to give lessons.
  • Money: A kidney social worker or hospital support worker may be able to help you access any financial benefits from the government that you are entitled to.
  • Holidays: preparing for a transplant, waiting for a suitable kidney to become available, and the many follow-up appointments and after care needed in the months after the operation may make it more difficult to plan family time such as holidays or visiting other family members. Speak with your team about how to plan this time away so that it fits around your child’s healthcare needs.

Other families

Talking with parents and carers who have gone through similar issues can be a big source of support and information. Ask your child’s transplant team about meeting with other families whose children have undergone a kidney transplant.

If you have any concerns or need additional support, speak with your doctor or nurse.

Transition to adult services

Children who have a kidney transplant will need life-long care to look after their new kidney. They may need dialysis or another transplant in future years.

When your child reaches adolescence, they will prepare to transfer (move) from paediatric services (for children) to adult services. The timing is different for each person – though many will start being looked after by an adult nephrology unit before they are 18 years old.

Helping with finances 

Kidney Care UK provides financial support to low-income families who are significantly impacted by kidney disease. For more information visit https://kidneycareuk.org/get-support/patient-grants/