Pediatric Lung Transplant Journey

The Pediatric Lung Transplant Journey

Pre-Transplant Journey

Preparing for lung transplantation can be very stressful.  Transplantation in children requires keen understanding of the impact of illness on both the patient and family. Johns Hopkins is one of only a few institutions with a dedicated children’s transplant team.  During the general evaluation you and your child will meet with many members of your child's pediatric lung transplant team including: specialty doctors, nurses, surgeons, social workers, nutritionists, etc.

Evaluation

The medical evaluation (or "work-up") generally consists of blood-typing, pulmonary function studies, swallow evaluation study, and cardiac evaluation tests. 

Patients will also undergo an evaluation by a physical and occupational therapist.  Most work-ups take approximately a few weeks to a few months depending on the severity of the illness and the size of the child.  When the work-up is complete, a letter of medical necessity as well as all medical information is sent to the insurance provider to request authorization to place the child on the United Network for Organ Sharing (UNOS) waiting list, the national, government-regulated waiting list.

Surgery

Patients awaiting transplantation may be called at any time. When the call comes, patients proceed to the Emergency Room to prepare for surgery.  A parent may accompany the child into the operating room and may stay until the child is asleep.

The surgery can take from 4 to 6 hours, depending on the patient’s medical condition and previous surgeries. After surgery, the patient will proceed to pediatric intensive care unit (PICU).  Family may visit as soon as the child is "settled in," which typically is within an hour.  The typical length of hospital stay for an uncomplicated lung transplant is 10 to 16 days.

More detailed information about this part of the lung transplant journey is available in our Pediatric Lung Transplant Book.

Post-Transplant Journey

After surgery, patients go from the PICU to a special unit with other pediatric patients whose pediatric nurses and child life specialists provide resources and care designed to speed their patients’ recovery.  The transplant team is designed to help patients and families transition into the transplant lifestyle.  Patients will continue to be closely followed in clinic until the age of 21, when they are transferred to the adult pulmonology service.  All patients are required to take antirejection medications for life, and most live normal lives.  More detailed information about this part of the lung transplant journey is available in our Pediatric Lung Transplant Book.

Other links in the Pediatric Lung Transplant site: Overview Transplant Team Information for Healthcare Professionals