Living long with short bowel syndrome: a historical case of twenty-nine years of living with home parenteral nutrition.

摘要

BACKGROUND: This paper traces the 29-year survival of Robert Thomas, who received home parenteral nutrition (PN), and contrasts his oral narrative with the clinical history of PN. METHODS: Interviews, chart review, review of the literature, and historical analysis. RESULTS: Bobby Thomas was part of an early group of patients scattered throughout the country who, with their medical team, provided the foundation for more successful survival with home PN. They learned together and taught numerous nutrition support clinicians the intricacies of patient management. The importance of the patient to the teaching function of new and experienced practitioners is highly critical. Patients like Robert Thomas gave practitioners firsthand evidence of both the tenacity of the human spirit and the complexity and difficulties of chronic illness and its treatments. CONCLUSIONS: While Bobby struggled with the complications and difficulties that came with the disease and the treatment keeping him alive, his own experiences over 29 years, as told to his medical team during his treatment and to informed interviewers before he died, tell a story that is both intersecting and parallel to the medical history. Pioneering patients like Bobby Thomas confirm the possibility of survival. They also, through their own negotiations to maintain a sense of control, can live lives they themselves help define.