Life in standby: hemodialysis patients' experiences of waiting for kidney transplantation.

Abstract

Our aim was to explore the experiences of hemodialysis patients who are waiting for a kidney transplant. Currently, more than 100,000 persons are waiting for kidney transplantation in the United States. In Sweden, the number is exceeding 600. The waiting period for a deceased donor can be one to three years or even longer in Sweden. This can be challenging, since the patients' situation, with chronic treatment and illness, is burdensome and requires advanced self-care. This study included a purposeful sample of eight patients (33-53 years old) who had been undergoing hemodialysis treatment for at least six months and were waiting for kidney transplantation. The patients were interviewed, and descriptive content analysis was performed. Four categories emerged: (1) 'The waiting process,' what thoughts and expectations occur and what to do and how to be prepared for the transplant. (2) 'Awareness that time is running out,' patients felt tied up by treatment and by needing to be available for transplantation, and they had concerns about health. (3) 'Need for communication,' patients described needing support from others and continuous information from the staff. (4) 'Having relief and hope for the future,' patients described how to preserve the hope of being able to participate fully in life once again. This study reveals the need for extra attention paid to patients waiting for kidney transplantation. Patients' experiences during the waiting period indicate that pretransplant patients have an increased need to be prepared for the transition and for life post-transplantation. Dialysis patients on waiting lists must be prepared for the upcoming life change. This includes preserving hope during the waiting period and being mentally prepared for transplantation and a dialysis-free life. A pretransplant education program to prevent medical and psychosocial issues is highly recommended.