Kidney Transplant | Listing & Waiting
When the evaluation is complete, the transplant team informs the family of the results. They also communicate these results to the child’s primary care physician and local nephrologist. In all of these situations, the kidney transplant team works closely with the family and the child’s physicians to develop a coordinated care plan.
Listing for kidney transplant
When it is determined that a deceased donor kidney transplant is the most appropriate treatment option, the child will be “listed” on a national computer system, United Network of Organ Sharing (UNOS), as a potential transplant recipient. UNOS matches organ donors by weight and blood type with individuals waiting for a new kidney.
UNOS receives data about patients who need organ transplants from all over the country and places them on a waiting list. The Pediatric Transplant Center will send the data to UNOS and update them as the child’s condition changes. Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant.
Children waiting for a transplant receive “points” for several factors, including how long they have been waiting, the closeness of the match with an organ that becomes available and the location of the transplant center in relation to the location of the donor. When a kidney from a deceased donor becomes available, a computer searches the list and ranks all candidates in order of their total number of points and the kidneys are offered to the candidates with the most points. If the match isn’t right, or if it’s not the right time for the patient to receive a transplant, the kidney is offered to the next candidate on the list.
The national average for waiting time on the deceased donor kidney organ list is about six to 12 months for children, but because Boston Children’s Hospital is part of the New England Region of UNOS, children currently wait about three to six months for a deceased-donor kidney transplant. The kidney transplant team will support the family during this waiting period. We frequently see these potential recipients in our Renal Transplant Clinic while they are waiting for a kidney transplant. Our social workers, child life specialists and child psychiatrists or psychologists are also available to the family as needed.
Kidney transplant team: On call 24/7
The Kidney Transplant Program has surgeons and physicians available 365 days a year, 24 hours a day and seven days a week. A kidney transplant surgeon or physician is available to facilitate organ acceptance, procurement and implantation and address urgent patient issues.
Kidney Transplant | Surgery & Hospital Stay
Kidney transplant surgery
When a deceased donor kidney becomes available, timing is critical. The child will need to be ready for the operating room within hours of arrival at Boston Children’s Hospital. For a living donor, the surgery will be scheduled and coordinated with the donor’s surgery at Brigham and Women’s Hospital, which is connected to Boston Children’s via a bridge.
Upon arrival at the hospital, the child goes directly to the Solid Organ Transplant Floor. There, members of the transplant team will perform a physical exam and run blood tests to make sure the child is ready to go to the operating room. The child may need to undergo dialysis before transplant. The recipient’s operation time is planned to match the team’s arrival back at Boston Children’s.
With a deceased donor transplant, it’s possible that when the surgical team sees the donor kidney, it becomes evident the organ is not ideal. Because we only intend to transplant an optimal kidney, the recipient’s surgical procedure is not confirmed until the team is at the donor hospital. The child’s surgery may be cancelled even after receiving medication and having blood tests. If that happens, the child may return home to wait for another potential kidney transplant.
Most kidney transplant surgeries take approximately four to six hours, although this varies depending on the child’s case. During the surgery, a member of the transplant team keeps the family informed about the progress of the transplant.
After the surgery, the transplant recipient will return from the operating room on a cardiac monitor and may also have a breathing machine (ventilator) with a breathing tube in the nose or mouth. In addition, he or she will have several IVs, an abdominal tube and an abdominal dressing. Typically, our older patients go back to the Solid Organ Transplant Floor. Our younger patients, and some of our more complex patients, will go to a single room in the Medical Surgical Intensive Care Unit (MSICU) for monitoring.
Possible complications after kidney transplant
Rejection
Post-transplant, kidney transplant recipients need to take medications to prevent rejection of the new kidney. Without these medications, the immune system doesn’t recognize that this new kidney is helpful and only sees it as foreign. The immune system therefore attacks the kidney, causing rejection. It is important that patients always take their medications as the kidney transplant team recommends, to prevent this from happening.
It’s not always easy to identify a rejection episode, and many children have rejection without any symptoms at all. The transplant team will watch for signs and show the family what to look for. Some of the most common signs include:
- fever
- tenderness over the kidney
- elevated blood creatinine level
- high blood pressure
- decreased urine volume
If a child has a rejection episode, the anti-rejection medication is increased or a different combination of anti-rejection medications is prescribed. In over 95 percent of these cases, adjusting medications will stop rejection.
Infection
Anti-rejection medications work by suppressing the immune system, but that means transplant recipients may be at higher risk for infections. Our team continually monitors the child’s health through blood tests and other exams. The child’s transplant pharmacist works closely with the rest of the transplant team to determine the best medications for the child.
Some of the infections a child may be especially susceptible to include:
- oral yeast infections (thrush)
- urinary tract infections
- cytomegalovirus (CMV) or Epstein-Barr virus (EBV)
- respiratory viruses
This risk of infections is especially high during the first year after the transplant. This is because patients need higher doses of anti-rejection medicines during this time, so their immune systems are especially suppressed.
Primary Graft Non-Function
Sometimes, a new kidney does not function properly for a few days — or even a few weeks. Patients may need a period of dialysis until the kidney “wakes up” and starts working. In very rare situations, patients may need another transplant
The hospital stay following transplant surgery
Depending on the transplant recipient’s age and size, the average hospital stay is about seven to 14 days. During recovery, the child is monitored closely for rejection, infection and other problems. Medications are adjusted frequently, while monitoring how well the kidney is working. The kidney transplant team, including child-life specialists, therapists and social workers, are available to provide support.
Going home after transplant surgery
Families are encouraged to take an active role in their child’s care while in the hospital. The partnership with the Pediatric Transplant Center is critical, because the child’s new kidney will need lots of care, attention and monitoring. Having a new kidney is a lifelong commitment. It’s important that the patient and family feel confident and comfortable with all aspects of care before the child goes home.
Medications
The transplant team will determine the appropriate medications and will discuss this plan with you before the transplant, during the admission and during outpatient clinic visits. The medication plan will include anti-rejection medications that will be taken for the rest of the child’s life. With the assistance of the transplant pharmacist, the family will learn to identify medications as well as discuss the usage and side effects of each medication. The pharmacist will meet regularly with the family prior to the child’s discharge.
Kidney Transplant | Long-Term Outlook
Living with a kidney transplant is a lifetime journey, and each child and transplant is different. Following the operation, the transplant team will see the child frequently for follow-up visits, initially once or twice per week in the Kidney Transplant Clinic.The frequency of visits will decrease over the first year post-transplant. For the life of the kidney, we recommend at least monthly blood draws to monitor the kidney’s function and the medication levels.
Our goal is to return a transplant recipient to as normal a routine as possible. Most children are able to return to school about two months after their transplant. While precautions need to be taken, we encourage them to lead full and happy lives — to play sports, spend time with friends and enjoy hobbies.
Physical activity
We encourage kidney-transplant recipients to participate in sports and activities as desired. Before the transplant, a child may not have been active; however, post-transplant he or she will gradually be able to increase activity.
For the first two months, children who have had a transplant must avoid rough play and contact sports. The kidney transplant team provides specific instructions and recommendations for sporting activities and gym classes. We recommend recipients wear a special kidney protector to participate in any contact sports or activities and will discuss this with you in our post-transplant clinic visits.
Medication adherence
Immunosuppression (anti-rejection) medications are prescribed to help the immune system accept the new kidney. Some are taken in pill or liquid form; others are given intravenously. As long as the child has a functioning kidney transplant, he or she will need to take anti-rejection medications.
A major reason for rejection is non-adherence (the medical term for not taking medications properly). Teenagers, both because they are seeking more control of their lives and because they don’t like some of the typically temporary physical effects caused by the drugs, have a tendency to skip their medications. An episode of rejection will lead to an inpatient admission for a kidney biopsy and more aggressive anti-rejection medications. Non-adherence may lead to rejection and loss of the kidney. Therefore, it is critical that medications are always taken as instructed, without missing doses.
We work with teenagers to help them take responsibility for their own medications. The key is promoting partnership and ownership and figuring out what works for each individual.
Nutrition
Adopting healthy eating habits after kidney transplantation can make a big difference in long-term health. A dietitian can help by teaching meal planning, portion control and tips for healthier eating.
Growth and development following kidney transplant
Our goal is to allow kidney recipients to continue to grow and develop like other children the same age. We try to limit restrictions and adapt their medical needs to allow for a normal schedule and activities.
A kidney recipient's physical growth is checked often. We make suggestions about necessary diet changes and carefully observe the kidney recipient at regular intervals, making suggestions along the way. Although transplantation adds many demands on children, most recipients adapt fairly well, and have our support every step of the way.