Waiting for a liver transplant: the experience of patients with familial amyloidotic polyneuropathy

Liver transplant is a new treatment for familial amyloidotic polyneuropathy. The purpose of this phenomenological study is to describe the experience of waiting for a liver transplant from the familial amyloidotic polyneuropathy patients' perspective. Unstructured and open-ended interviews were conducted with 14 familial amyloidotic polyneuropathy patients and the analysis of data was inspired by Colaizzi's method. Waiting was found to involve two theme categories: waiting for a decision; and waiting for the operation. Seven themes were identified: bargaining with oneself; no influence/powerlessness; relief and joy; impatience; agony; time to prepare; and need for information and support. Implications for nursing practice, such as informational and emotional support, are discussed.