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Pediatric Care Transition FAQ

"I have heard they do things differently at the adult program."
Both adult and pediatric teams take a very similar multidisciplinary team approach to caring for patients who have had a lung transplant. One of the biggest changes is that as adolescents grow to adulthood, they gain the freedom to make independent decisions about their education, employment and relationships. In the adult lung transplant program, they now have the freedom to make such independent decisions about their health care.

Lung Fast Facts

Program Start: 1988

More than 880 lung transplants performed

Largest and most renowned lung transplant program in the United States

One of the first lung transplant programs in the U.S.

First in Missouri to perform a simultaneous heart and lung transplant
"I have worked with the pediatric team for so long, how will I know if the adult team will be available to me and my family?"
Patients are assigned a primary nurse coordinator who oversees care and is available during office hours. A lung transplant nurse coordinator is on call 24 hours a day, every day of the week– after office hours, on weekends and holidays – to answer questions about care and help with medical emergencies.

"Are there others who have had to make the transition to the adult team?"
Yes! The adult program has a team of transplant mentors who are available to talk with patients about what it is like receiving care in the adult program. The mentors are other patients, including graduates of the SLCH pediatric program, who have had a lung transplant and are now followed in the adult program.

"Where will I be receiving care?"
The adult clinic at the Jacqueline Maritz Lung Center, PFT area and laboratory are located on the eighth floor of the Center for Advanced Medicine at the corner of Euclid and Forest Park Avenues. When patients are admitted to the hospital, they will be assigned a room at Barnes-Jewish north or Barnes-Jewish south. The same physicians follow patients both in the clinic and in the hospital.

"If my lung function goes down, can I have another transplant?"
Despite advances in transplantation, chronic rejection is still a problem and affects half of the five-year survivors. We use all medical options to stabilize a patient's lung function. If lung function continues to decline, re-transplantation may be considered as a last option in certain cases. Because of the scarcity of donor organs and the number of people waiting for their first transplant, re-transplantation is much less common in adults. While we can't make any promises, every case is considered individually.

"Will I ever see the pediatric team again?"
Yes! We encourage continued social contact with the St. Louis Children's Hospital team and ongoing medical contact with the adult team.