Transplantation is the best treatment option for children with end stage kidney disease (ESRD). Physicians and dialysis centers refer their patients to the Transplant Center to be evaluated as a candidate for transplantation.

The evaluation for a kidney transplant is a complex and extended process. When the referral is made to the Transplant Center the evaluation process begins. The evaluation 'process' consists of data gathering, patient and provider interactions, medical testing, various health assessments, and analyzing the data. This portion of the process concludes when the case is reviewed by the multi-disciplinary transplant team and a decision about the candidacy for an organ transplant is made.

The pre-transplant coordinator and/or pediatric kidney transplant medical assistant will be contacting your referring physician's office for copies of your child's medical records. It is helpful to verify that your child's records have been sent prior to their scheduled appointment. Since routine medical care must be current prior to transplantation, it is recommended that the child is current with their routine health care prior to their evaluation. Examples of routine health care includes dental exams and cleaning, immunizations (including PPD, pneumovax, and influenza vaccine), and identification of a primary care provider that will address the child's well child care needs post renal transplantation.

The family will receive a packet of information in the mail. It is very important to review this information and complete the forms prior to arriving for your child's evaluation appointment. Adults accompanying the child will need to bring several things to the child's evaluation appointment, such as complete insurance information, the completed forms, information on potential donors, and money for parking. It is helpful to gather this information well in advance of your child's appointment.

If your child is covered by a managed health insurance plan, call the insurance plan ahead of time to find out if you need to obtain a referral from your child's primary care physician for this evaluation. If your child needs one, make sure that we have it for your child's appointment.

If members of your family are interested in donation (kidney), it is helpful to bring information including their names, addresses, telephone numbers, birth dates and past medical histories to your child's evaluation appointment.

When you come with your child for their pre-transplant evaluation, plan to be at the hospital for at least 3-4 hours. You will meet with several members of the transplant team which will include a transplant coordinator, a pediatric renal transplant nurse, a pediatric nephrologist, a pediatric renal transplant surgeon, a pediatric nephrology social worker, and a pediatric nephrology dietician. Your evaluation appointment will include blood work, urine tests, identification of potential living related kidney donors, and blood work for potential kidney donors. Each child and their family will begin their transplant education at their evaluation appointment, and will be given a packet of materials to learn as their child undergoes the evaluation process.

You will need $2.00 to park in our structure. In order to get this reduced rate of parking, you need to bring your parking ticket into the clinic to be validated.

The transplant coordinator gathers the data from all the testing requested. If all the testing has not been completed the coordinator will contact the child's family to request further testing. Once all the data is complete the case will be presented to the multi-disciplinary transplant team. While most children are candidates for transplantation, the team may either require additional tests to help ensure that the child is healthiest at the time of their operation. Your physician or a local lab can usually perform some of these tests. Occasionally it is necessary to require a child to return to Ann Arbor to see University of Michigan physicians for additional testing. Once the multi-disciplinary transplant team determines that a child is approved to be listed for a transplant, the coordinator begins the process of placing the child on the waiting list. You will receive notification of the transplant team's decision by mail, and perhaps by telephone. You will need to identify at least one or two support persons to help you through the child's transplantation process. If a parent is planning to pursue living donation, it is important that the identified support persons are not the donor.

Once the evaluation is complete, the child has completed all of the necessary testing and has been cleared by the transplant team, the child will be placed on the waiting list. To remain active on the list, children and their caregivers must keep up with the listing requirements. Listing requirements include submission of routine blood samples for tissue typing, scheduled visits to the University of Michigan transplant clinic, yearly follow up testing as requested, and any new testing and/or records that are requested. If these requirements are not met, your child will be placed “on hold”. This means that if a kidney becomes available for your child while your child is placed “on hold” that the kidney will not be accepted for your child. It is in the child's best interest to actively participate with the transplant team to ensure their medical information remains current while they are on the waiting list. Other situations may cause a child to be placed on hold, such as severe infections, noncompliance (medications, dialysis therapy, clinic visits or medical recommendations), a significant illness and/or operation, and poor support or supervision for the child at home. It is crucial patients keep the transplant team informed of any health changes.

Once the child has been accepted as a transplant candidate and the child is listed for an organ, the wait begins. We routinely list children on the wait list even when the family is working towards identifying a living donor. This is done to provide the child with equal opportunity to both avenues to transplantation. If a family is not able to identify a living donor or if their living donor is not able to donate, the child is credited for their wait time during their search for a living donor.

It is imperative that children have their monthly blood sample drawn without fail. This is already done for the child if they receive hemodialysis at the Pediatric Dialysis Unit at the University of Michigan Medical Center. Other children and their families are encouraged to bring the blood sample tube with them to their outpatient pediatric peritoneal dialysis clinic visits or their general nephrology clinic visits. If they visit the University of Michigan less often than once a month, interval samples will need to be drawn and submitted locally. This sample is required in order to maintain active status on the transplant list. Families who do not receive a blood draw kit for their child should call the Transplant Office to obtain one. Children who do not have a current blood sample are NOT considered for any donor.

Immediate family members of the child will be asked if they are interested in living kidney donation at the time of their child's renal transplant evaluation. Potential donors are asked to confirm their blood type prior to their child's evaluation by either contacting their physician or by going to the Red Cross. Immediate family members that have compatible blood types with the child will have tissue typing drawn at the time of the child's transplant evaluation. If immediate family members are not able to donate, contact information is given to the family, who can in turn provide that information to additional family members and friends who may be interested in donating. The donors are invited to contact the Living Donor Coordinator who will explain living donation. If the potential living donor is interested in proceeding, they will be sent a tissue typing kit. They will take this kit to a local lab to have their blood drawn to be sent to the University of Michigan Histocompatibility Lab. Potential living donors complete a thorough evaluation process, similar, but separate from the process the recipient completes. If a person is identified as an acceptable donor, the process continues with selecting a surgery date, a medical appointment for the donor for the purposes of a preoperative history and physical, final cross match blood tests, and surgery.

If there are multiple potential donors for a child, the child's caregivers are asked to identify the child's primary donor. Donors are evaluated one at a time until an acceptable donor is found.

A deceased donor organ becomes available

The wait is long and just when patients and their families think that call will never come, the phone rings!

When an organ becomes available, a Transplant Coordinator will call the listed child's family to advise them that an organ has become available for them. It is important to remember that the Transplant Coordinator has only one hour to find a patient and accept the organ for them. The timeline moves rapidly -- from the time of the phone call to offer the organ to the patient, to the time the patient goes into the operating room.

When a child is called for a transplant, it is imperative the child and their caregivers tell the Transplant Coordinator if the child has been ill recently. An active infection or any other significant health problem may result in cancellation of the transplant surgery. In addition, if the organ offered comes from a deceased donor and shows signs of poor function or deterioration, surgery will be canceled until a healthy organ can be found. While people who receive a living donor organ have some flexibility in the scheduling of their surgical event, children receiving an organ from a deceased donor will be admitted and have their surgery as soon as possible.

Once a child has been notified that an organ is available, it is important that they do NOT eat or drink anything. A child's stomach must be empty for several hours before surgery. Children will be in the hospital for several days, therefore they may want to bring some comfortable clothes/pajamas, personal care items, and a comfort item/toy. Caregivers should also bring their child's current medications.

Upon arrival at the Hospital and before surgery, the child will have a physical exam, blood and urine tests, and an I.V. will be placed. If a patient were to have an active infection or any other significant health problem, the transplant may have to be cancelled. If a patient needs dialysis (hemodialysis or peritoneal dialysis), this will be initiated upon admission to the hospital.

Children will be taken to the operating room following their pre-operative history and physical. The operation generally lasts 3-6 hours. Following the operation the child will go to the Pediatric Intensive Care Unit for a minimum of 24 hours. Once they are no longer in the need of care in the Intensive Care Unit, they will be transferred to the 6th floor of Mott Children's hospital. Patients may be discharged between four and seven days after the procedure depending on how smoothly they recover from the operation.

Before a child leaves the hospital, the Transplant team will instruct the patient about medications, diet, and everything else the patient needs to stay healthy.

Generally appointments for a child's first follow-up visits and lab tests will be scheduled before the child is discharged.

Immunosuppressive (anti-rejection) medications are given to prevent and treat rejection episodes and must be taken on a regular basis (and at the correct time) for the rest of your child's life or as long as the child has their new organ. If the child discontinues these medications, rejection will soon occur. Teenage years are often met with the highest rates of medication noncompliance among all children transplanted. As a result transplanted kidneys are at high risk of being lost during this time. Therefore, it is essential that the child be both physically and mentally prepared for this prior to proceeding with the transplant surgery. In addition, any noncompliance post transplantation must be reported to the child's Transplant Team immediately.

Medications that may be utilized to prevent and treat rejection include Prednisone, Neoral, Prograf, Cellcept, Thymoglobulin and OKT3. All immunosuppressive medications can cause side effects. You and your child may notice some of these side effects, but not all of them will occur in everyone. The dose of these medications and the risk of side effects are reduced the farther out a patient is from transplantation. Your child's nurses and doctors will discuss these medications and their side effects in full when you come for your transplant evaluation, and they will provide you with educational material reinforcing this information at that time. All immunosuppressive drugs decrease your body's immune system (resistance); this serves to protect your organ, but also increases your risk of infection and cancer, especially skin cancer. Liberal use of sunscreen and avoidance of prolonged sun exposure both before and after transplantation is your child's best protection against the development of future skin cancers.

The transplant community is joined under the nationwide umbrella of the United Network for Organ Sharing or UNOS. The transplant team is responsible to routinely report to UNOS lab and statistical information on all patients that are transplanted. Therefore, it is important that patients remain in contact with the transplant team. Please contact the team if your contact information changes.