Life After Lung Transplant
Most of our pediatric lung transplant patients recover within days of transplantation and the average duration of a lung transplant hospitalization is 11 days. Infants and previously hospitalized children and adolescents often require longer hospitalization. Discharge from the hospital is, in many ways, the dawn of a new and better life for most transplant patients.
It is important for patients and families to remember that complications happen. The lung is the organ most frequently infected and severely rejected by the body’s immune system. The medications used after transplant to suppress the immune system can cause complications.
For that reason, the Lung Transplant Program team requires patients and families to stay in the Houston area for the first 3 months after transplant and to return for thorough evaluations on a regular basis. We see patients twice weekly for the first several weeks and then transition to once weekly clinic visits while the patient is in Houston. Most patients are seen in Physical Therapy 2-3 times weekly during the critical first 3 months after surgery.
Quality of life
Quality of life typically improves dramatically following transplantation. Most children and families are amazed at the improvement in energy, attitude and appetite. We believe that it is important for all recipients, especially adolescents, to have a plan for the future, including academic, social and career goals.
School attendance is expected. We transplant children so that they can live “near normal” lives. Despite the requirement for lifelong immunosuppression, most children return to school. The teacher, school nurse and principal will need to understand the child's condition, that physical education without contact sports is desirable, and that with severe community viral outbreaks, short breaks from school may be necessary. Good hand hygiene can reduce the incidence of community acquired viral respiratory infections at school and at home.
Return visits to Texas Children's Hospital occur at 6, 9, 12, 18, 24 and 30 months after transplantation and periodically thereafter. For some acute illnesses or follow-up on complications, additional visits may be required. Families need to keep travel and hotel expenses in mind as they consider transplantation. Most re-evaluations can be performed over a 3-day period, most commonly Monday through Wednesday.
Partnership and communication with referring physicians after patients return home are vital. It is important for referring physicians to see the transplant recipient soon after return home to:
- Establish a baseline examination in the event of acute illness.
- Establish a hierarchy of communication with the Texas Children's pediatric lung transplant team, preparation for lab work and general reacquaintance.
Whenever there is confusion or uncertainty, call your Texas Children's pediatric lung transplant coordinator or the transplant clinician on call at night through the Texas Children’s operator at 832-824-1000. This is especially important if the primary care physician at home prescribes a new medication or wants to modify the prescribed medications with which the patient was discharged.
Communication is a beautiful thing but it requires diligence, detail and timeliness. Our transplant coordinators and physicians would like to know about every significant illness and hospitalization.
Transition to adult care
Graduations are often bittersweet events. Children grow up. Adolescents become adults. Our goal for every patient is that they will need the transition to an adult lung transplant program. We have two adult lung transplant programs in Houston – one at Methodist Hospital and the other at St. Luke’s Episcopal Hospital.
We have good relations with both programs and with other adult lung transplant programs in other states. Between the ages of 18 and 21 years of age, we transition all of our patients to adult care. We expect and encourage adolescents to take responsibility for their medications, their communication with the transplant team and with timely communication. On the other hand, we hope that all our graduates will keep us informed after they move on.