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Familial amyloidotic patients’ experience of the disease and of liver transplantation


Elisabeth Jonsèn Doctoral Student, Department of Medicine, Gastroenterology Section, Umeå University Hospital, S-901 85 Umeå, Sweden.


Liver transplantation is a new treatment for familial amyloidotic polyneuropathy (FAP). No qualitative study examining these patients’ experiences of the disease and the treatment has been published. The purpose of this study was to explore and describe the experience of the disease and the liver transplantation from the FAP patient’s perspective. In-depth interviews with 11 liver transplant FAP patients were performed. The process of the FAP disease and a liver transplantation was found to involve the following categories: going downhill, defence and denial, a chance of surviving, the decision — no choice, waiting powerless and uncertain, the first few steps after surgery, freed from the death sentence, still disabled, mastering up strength to recover, and the need for support and help.