How is my child's care coordinated between Mattel Children's Hospital UCLA and my kidney doctor?
Each end-stage renal disease patient is assigned a coordinator from the UCLA Kidney Transplant Program at the time of the initial evaluation. Transplant coordinators are nurses who will be responsible for the overall coordination of your child's transplant-related care at UCLA. They will maintain contact with the patient's referring doctor and/or local pediatrician.
At the time of the evaluation appointment, the UCLA kidney transplant office may request the following information:
- Full chemistry panel
- Complete blood count (CBC), differential, platelet count
- Hepatitis studies
- HIV screening
- Blood test for syphilis (VDRL)
- CMV titers, EBV titers
- Evidence of up-to-date immunizations
- Urine culture with sensitivities
- Recent electrocardiogram (within 6 months)
- Chest x-ray and/or PPD
- Renal ultrasound, if necessary
What happens at the evaluation appointment?
Pediatric transplant candidates are evaluated at UCLA in two or three outpatient visits. The evaluation process includes a thorough medical and psychosocial assessment, and every effort in made to provide a relaxed, supportive and informative experience for patients and their families.
An evaluation appointment can be scheduled by calling the Transplant Office at UCLA Children's Hospital at (310) 206-6492. During the evaluation, appointments will be scheduled for you to meet with the transplant nephrologist, surgeon, transplant coordinator and social worker.
The nephrologist will perform a complete history and physical, review previous test results and decide if any further tests are required. The surgeon will discuss the transplant procedure and address any issues that may affect the surgery itself. Your child's UCLA transplant coordinator will communicate with his/her kidney doctor, keep records up-to-date, and be your contact person to answer questions. Information about the transplant evaluation, listing process and waiting time periods will be provided by the transplant coordinator, as well as the options of living donor or cadaveric transplant. An assessment of your child's emotional well-being, transportation, housing and financial resources will be made by the social worker with involvement by the financial counselor, if necessary.
Also during this appointment, blood for tissue typing will be drawn. All other tests, including blood tests, will be arranged according to your provider policy. Potential kidney donors are encouraged to attend this appointment for information and to initiate the donation process.
Tests and examinations that will be performed at UCLA include:
- Transplant nephrology medical evaluation
- Surgical evaluation
- Psychiatric and/or social work evaluation
- Blood typing
- Tissue type identification and antibody screening
- Tissue type identification, blood type identification, and crossmatch test of any potential donor
Following the evaluation appointment, each child's case is presented at the weekly meeting of the UCLA Kidney Transplant Selection Committee, which is made up of all members of the renal transplant team. At this time, a determination is made if any other tests are required to ensure your child's candidacy for transplant. Your coordinator at UCLA will notify you and your referring physician and/or nephrologist of the recommendation made by the transplant team. Upon completion of additional tests with satisfactory results, the child is placed on the transplant waiting list.
What are my transplant options?
The Pediatric and Adult Kidney Transplant Programs at UCLA offer both living-related and cadaver donor transplantation. If a patient is accepted as a transplant candidate at UCLA, the possibility of a living-donor transplant is explored and encouraged. With a living donor, a transplant can take place as soon as all tests are completed for the donor and recipient.
Children who require cadaveric transplantation are placed on the national transplant waiting list. Children who are less than 18 years old are given special consideration, to help achieve earlier transplantation. This list has over 40,000 potential recipients on it and is maintained by the United Network for Organ Sharing (UNOS). When a kidney is available, the donor blood type and tissue type are entered into the UNOS computer. Once the best possible match is identified, the UCLA Transplant Center is notified. The average wait for potential transplant recipients who live in the Los Angeles area is one to three years.
While on the waiting list, each patient's health status is followed closely. A monthly blood sample is sent by the dialysis unit and is held at UCLA to be tested with all potential donor kidneys. Close contact between your child's nephrologist, dialysis unit and UCLA coordinator is essential. Any hospitalizations, surgeries, tests, blood transfusions, infections or change in address and phone number should be related to your UCLA coordinator so records are up-to-date if a kidney becomes available. Each patient needs to schedule an appointment at UCLA every six months while on the waiting list.
How do I prepare for transplantation?
While you are waiting for transplantation, make plans for what you and your child's needs will be following surgery. Transportation to clinic visits, assistance at home, and financial issues are the most common concerns. The transplant social worker has a wealth of information and resources available. In addition, keeping active and maintaining good nutrition are all important factors to keeping your child as healthy as possible.
How long will my child be in the hospital?
Following a kidney transplant, the length of stay in the hospital is usually five to seven days, but can extend to several weeks in more complicated cases. Your child will be seen daily by the transplant team. Discharge planning is started at the time of admission by the social worker and coordinator with plans for care at home, transportation to clinic visits, and housing, if necessary. Education about all aspects of after-transplant care including medications, clinic visit schedule and daily activities will be provided by the transplant coordinator.
Who will take care of my child's health needs after discharge?
Follow-up at Mattel Children's Hospital UCLA continues as long as the kidney continues to function. Initially, your child will be seen several times a week. Periodic but less frequent visits to UCLA will continue as long as the kidney is functioning. Your referring nephrologist and UCLA nephrologist will work together to provide your care.