Lung Transplantation and Cystic Fibrosis: The Psychosocial Toll

Lung and heart-lung transplantation have been available as treatment options for cystic fibrosis (CF) since the mid-1980s.1–3 The last decade has seen progress in the understanding of complications such as rejection as well as improvements in surgical and anesthetic techniques that expand the number of CF patients for whom transplantation is an option. As clinical problems such as airway colonization with antibiotic-resistant organisms, sinus disease, and malnutrition yield to continuing research, the potential CF transplant population will increase further. Although it is clear that lung transplantation is of great benefit to some patients with CF, it is also clear that transplantation comes with psychological, social, medical, and financial costs that are different from the burden experienced by patients, families, and CF caregivers in the pretransplant period. Each of the changes from CF patient to CF patient awaiting transplant to CF patient with lung transplant necessitates major alterations in attitudes toward CF care by patients, families, and caregivers. These in turn may result in uncertainty in the areas of control of patient care and continuity. Indeed, our experience leads us to believe that for some CF patients the psychosocial price paid for transplantation coupled with the risks inherent in transplantation together outweigh the potential benefit of the procedure. Patients and families often have the idea that transplantation is uniformly effective and carries a relatively low risk of significant complications, neither of which is the case.3–5 In discussing lung transplantation, Trulock6 has stated, “Lung transplantation is a treatment, not a cure, and it is not a panacea.” A common maxim among transplantation physicians is “Transplantation involves trading one disease for another.” For CF, however, a more correct saying might be “Lung transplantation for CF involves trading part of one disease for an entire second disease.” One trades the lung …