A “return to normalcy” or establishing a “new normal”: The patient experience of liver transplantation

Abstract

Background

The experience of liver transplantation is incompletely understood from the patient perspective. The purpose of this investigation was to characterize patient experiences central to the process of liver transplantation from the time of diagnosis through the first year after liver transplantation.

Methods

Semi-structured interviews were conducted at a liver transplant center from January 2021-August 2021 with liver transplant recipients one year following liver transplantation.

Results

Twenty patients and eight caregivers participated in the study. Participants described diverse experiences recognizing and accepting their illness. Motivations for pursuing transplantation were varied as was severity of illness, the perioperative course itself, and the process of recovery after transplant. The establishment of a “new normal” was a consistent theme across participants. Interestingly, we found a tension between the motivations described by many patients and the reality of the outcome many of them faced after transplantation. While, the motivation for many patients was to return to a previous level of physical and mental function they had before their liver disease they often were faced with a new improved status as opposed to a return to their previous full function. This new normal describes tension between restoration of physical function, acceptance of new limitations and a progression toward a new sense of values created by the transplant experience itself.

Conclusions

Many recognize that liver transplantation restores physical wellbeing, but few recognize that transplant often fundamentally recreates personhood. Sensitivity, to these changes should be recognized to maximize the success of liver transplantation patients.