Patients' experiences of waiting for a liver transplantation

Organ transplantation has increased worldwide while the number of organ donors have not increased similarly. Consequently, the waiting period for transplant candidates is prolonged. Patient narratives have uncovered physical and psychosocial suffering in the transplantation process. However, relatively few studies have explored patients' experiences in the actual waiting period. This qualitative study was conducted in Norway and aimed to describe patients' experiences of being accepted as recipients of a new liver and their waiting following this decision. A sample of 21 patients with end-stage liver disease, placed on the ordinary waiting list for a liver transplant, were interviewed in the hospital before they went home to wait for a compatible liver. Uncertainty related to life and death was a major issue, both in the waiting period and as a response to being put on the waiting list. Another central issue was their overwhelming lack of energy. Patients inferred a linear relationship between lack of energy, physical limitations and mental distress. Despite major advances in medical treatment, little follow-up was given during the waiting period and most of the patients seemed resigned to the inevitability of their suffering. This raises issues of health personnel responsibility and a need to heighten awareness about patient suffering during the waiting period.