Patient Story: Pediatric Lung Recipient

The transition from child to adult can be difficult for anyone. When the transition means leaving behind the people who saved your life, it can be even tougher.

Jessica Joice, who has cystic fibrosis (CF), received a living-related lobar lung transplant at St. Louis Children’s Hospital in 1996 when she was 15. Jessica, a West Plains, MO, native was visiting the Children’s transplant program with her family when an unexpected crisis during her visit put her in the hospital and on the fast track for a living donor transplant.

During Jessica’s recovery, her efforts to raise funds for CF care and research by selling everything from hair bows to cappuccino and her warm, bubbly personality won her close friends among the other Children’s patients and staff.

As she grew older, she began to see more adult doctors, but was reluctant to entrust her lung care to the Barnes-Jewish Hospital transplant team. Although Barnes-Jewish Hospital is just across the street, Jessica felt she was stepping into the unknown. She says she felt very comfortable with the Children’s team, which had saved her life.

Jessica’s fear is common among patients coming from a pediatric program, where the patient often is only minimally involved in the decision-making process, to an adult program, where the patient is suddenly expected to take the lead in directing their care.

But when Jessica finally voiced her concern to her coordinator, the coordinator realized that Jessica’s background in the pediatric program called for a different approach. Since then, Jessica feels her coordinator has become "a great friend," as well as a partner in Jessica’s care.

As a result of Jessica’s experience and others, the transplant team formed a roundtable to find ways to ease the transition. Jessica sits on the roundtable, providing a patient perspective.

"I know now," says Jessica, "that, yes, the Barnes-Jewish team really cares."

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