Once your child is approved by the Medical Review Board, the last step in the evaluation process is placing them on the United Network for Organ Sharing (UNOS) waitlist for transplant. UNOS is an organization that coordinates the efforts of organ procurement organizations, which include transplant hospitals and specialty labs that measure organ compatibility. Together, they help match viable donated organs with the right recipients.
Your child will be assigned one of two waitlist statuses:
Inactive (Status 7)
Your child will be listed on the deceased donor waitlist but will remain inactive and unable to receive a deceased donor kidney until all recommendations from the Kidney Transplant Medical Review Board are complete and reviewed by a kidney doctor. Your child will continue to accrue waitlist points.
Active
Your child will be listed on the deceased donor waitlist actively waiting for a kidney.
Two donation methods
Kidney donation is unique because in addition to deceased donor organs, kidneys may be donated by a live donor. During the evaluation process, your doctor will help you decide which option is better for your child. For example, if your child’s kidney disease is hereditary, a live donor may not be the best choice. Texas Children’s currently has an active living donor programfor kidney transplant, contracted with CHI St. Luke’s Health in the Texas Medical Center.
What to Expect: FAQs
The transplant team will determine how often your child needs to be seen in the clinic. Your child may also require dialysis during this period.
The waiting period is hard to predict and could take several days, weeks, months or even years. The wait time depends on his or her listing status, age, size and blood type.
You must be available day or night to accept the call when a kidney becomes available and arrive at the hospital in the amount of time specified by your transplant coordinator. Ensure you have a phone with you and update your transplant coordinator of any changes to contact information immediately.
If you are leaving town, notify your coordinator (before you leave) of any plans to leave town while your child is listed, so necessary arrangements may be made in advance. This also holds true after transplant, as we may need to contact you with lab values and medication changes.
You will not be asked to live within the Houston area once you are placed on the waiting list. However, The transplant coordinator must be able to locate you 24 hours a day, and you must be able to reach the hospital within three hours of the time that the donor kidney becomes available.
If your child’s health improves, they may be removed from the list because they no longer need a kidney transplant. If they become too sick, they may be removed as well.