Kidney Waiting List
Your child is not automatically placed on the transplant waiting list at the time they develop end-stage renal disease. First, you and your child need to have a pre-transplant evaluation set up by the transplant team.
Once the evaluation is complete and approved by the team, your child is considered ready for transplant. Until then, your child may need to start or continue dialysis treatment.
Your child is then placed on the waiting list, a nationally computerized list kept by the United Network for Organ Sharing (UNOS). The transplant team will let you know when your child is placed, or "activated," on the list.
Assigning Donor Kidneys
Although there is a national waiting list, most donor kidneys are shared within their local region, depending on how good the donor match is to the person waiting for a kidney.
If the kidney is a perfect match with a person on the national list, however, it is offered to that person no matter where they are located.
Because a successful kidney transplant can have a large impact on growth and development, it is a national priority to transplant pediatric patients.
Many factors are considered each time a kidney becomes available such as:
- Blood type
- Tissue type
- Length of time on the waiting list
- Age of the recipient
Length of Wait Time for a Transplant
There is no way to predict how long your child will wait for a new kidney from a deceased donor. The waiting time can be several months to years and depends on:
- How common your child's blood type and tissue type are
- Availability of donor kidneys
- Whether your child has antibodies against foreign tissue in their blood
- Age at the time of listing. Children listed before turning 18 years old get special consideration.
Listing at Multiple Centers
You can have your child listed for deceased donor kidney transplantation at multiple centers. While this may improve the chances of getting a kidney, it can also complicate your child's care before or after receiving a transplant.
In the Meantime
The most important thing your child can do while waiting for a kidney is to stay as healthy as possible. This will give your child the best chance for a successful transplant outcome. You should follow your child’s dialysis schedule, diet and fluid restrictions, and make sure your child takes their medicines as prescribed.
Living Out of Town
It is very important that you keep in regular contact with the transplant coordinator, letting them know about any changes in your child's medical condition, such as illness or hospitalization. This may impact your child's ability to undergo transplant surgery.
Matched Kidney Contact Information
Because a deceased donor kidney can become available at any time, it is essential that the transplant team is able to reach you 24 hours a day. If you do not have a pager or cell phone of your own, we can usually provide you a transplant pager for this purpose.
It may also be helpful to have telephone numbers of family members or friends who know where you are. It is very important that you keep your transplant coordinator informed of things such as changes in your phone number, plans to be away on vacation, etc., so that you do not risk missing the call for a kidney.
Since there is a time limit to how long the kidney can be stored in a special solution once it has been removed from the donor, you will need to come to the hospital as soon as you have been told that a kidney is available for your child.
Arrival at the Hospital
Once your child is admitted, they will have a thorough physical exam to ensure there is no active illness. An illness could put your child at risk for surgery or anesthesia.
Your child will also have blood tests, and a final crossmatch is done between your child and the donor. The crossmatch tells us whether your child has antibodies that may react against the donor. A negative crossmatch (no reaction) is necessary to proceed.
These test results will take several hours. In the meantime, your child will receive dialysis, if necessary. If there are problems with any of these test results, the transplant may be canceled. If not, the transplant surgery will proceed once the operating room and surgical team are ready.