TEXAS CHILDREN'S PEDIATRIC LUNG TRANSPLANT PROGRAM
Life after lung transplantation

Texas Children's Pediatric  Lung Transplant Program Lung transplant main History of program Treatment team Referrals and insurance Evaluation process Frequently asked questions Planning your stay in Houston Life after lung transplantation Resources

It's important for families and patients to remember that complications happen.

The lung is the organ most frequently infected and most frequently and severely rejected by the body’s immune system. The medications used after transplant to suppress the immune system also can cause complications. For that reason, Texas Children's Pediatric Lung Transplant Program team requires patients and families to stay in the Houston area for the first three months after transplant and to return for thorough evaluations on a regular basis.

Quality of life is usually dramatically improved following transplantation. Most children and families are amazed at the improvement in energy, attitude and appetite. 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.

Follow-up care
Return visits to Texas Children's Hospital occur at six, nine, 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.

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 Texas Children's pediatric lung transplant coordinator. 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.

Patient outcomes for pediatric lung transplants
Projected survival statistics are getting better slowly. Most children referred to Texas Children's and evaluated for lung transplantation will survive to get organs. The chance of survival is usually greater than 95 percent for the transplant operation and greater than 90 percent for transplant hospitalization. The survival probability at one year is 85 percent; at five years is 65 percent; and at 10 years is 40 percent.

Texas Children's Pediatric Lung Transplant Program team strongly believes that with hard work and progress in care and immunosuppressant medications, future survival rates will be higher.

One of the most encouraging and inviting aspects of our program is the short waiting list. In our first 20 transplants, the median waiting time was less than two months.