It has been 20 years since organ transplantation started in Japan. It began with living-donor liver transplantation (LDLT) for children; adult-to-adult LDLT then followed; and the Act on Organ Transplantation became effective in 1997 under the recognition of brain death as human death. The Japan Organ Transplant Network (2010) reported 115 cases of transplant from brain-dead donors taking place by December 2010. Approximately 3200 cases of LDLT and liver transplantation from brain-dead donors had taken place by 2006 (as reported by the Japan Liver Transplantation Society). The number of living-donor renal transplantation (LDRT) cases was approximately 13 000 in 2004. The 5 year survival rate after liver transplantation from brain-dead donors, heart transplantation, and renal transplantation is 80–90%; those after LDLT and LDRT are approximately 76% and 88%, respectively; and the rate is increasing.
Organ transplantation has brought significant benefit even for some of those patients whose disorders are treated ineffectively with medication, leading to death. The results have increased enrollment into transplantation programs year by year. The number of brain-dead donors has, however, been insufficient relative to the waiting patients, and only a few cases of transplantation occur under the Organ Transplantation Act annually, although 29 cases of this type of operation were reported in the 6 months following amendment of the Act in July 2010.
Transplant recipients’ daily lifestyle is significant to avoid repeated transplantation. The treatment does not end with the fortunate reception of the donated organ, but rather life-long self-management after the operation is needed. Previous studies have focused on the technique of operation, immediate postsurgical management, and medication such as immune-suppressing drugs; by contrast, studies are fewer (Bravata, Olkin, Barnato, Keeffe, & Owens, 1999; Bona et al., 2000; Desai et al., 2008) on the recipients’ self-management at 1, 5, and 10 years after the operation and their return to daily lifestyle, especially looking at increasing their quality of life (QOL), and the detailed picture of the problems encountered after discharge from hospital is not clear.
Medical and psychological/mental issues have comprised most of the previous studies on transplantation. Those in the medical field have looked at the techniques of operation, medications for avoiding rejection such as immune-suppressing drugs, therapeutic management after operation, and so forth. Additionally in Japan, as the cases of LDLT are many more than those of liver transplantation from brain-dead donors, both donors and recipients have been studied in psychological/mental investigations, in which psychiatrists have reported mental symptoms after the LDLT operation as a familiar problem. The research also indicated that anxiety before the operation increases mental symptoms after the transplantation.
Considering the self-maintenance after leaving hospitals, patients who undergo transplantation are required to keep taking immune suppressors for life, which forces them to deal with infections and rejection. They also become patients with chronic diseases after transplantation. Leaflets providing notes and suggestions are made and distributed to patients after leaving hospital at the beginning of transplantation. However, no studies have tested the effects of the leaflets; there are only the results of questionnaires by the participants, which show patients’ anxieties concerning repeated transplants, coexisting illnesses such as infections, negative side-effects of medications, and so forth. In fact, the rate of repeated hospitalization of liver transplantation recipients is approximately 75% (Nagai et al., 2008), and that of repeated transplantation is approximately 2.7% (as reported by the Japanese Liver Transplantation Society, 2010). Gillian (1999) reported on the lifestyles of those after leaving hospital post-transplant abroad and stated that the patients needed the support of their family and friends in order to maintain QOL.
It is valuable to examine the daily lifestyle of survivors 5 years after leaving hospital by interview in order to clarify the actual situation, which will lead to more effective guidance of self-management based on daily lifestyle after hospital discharge. It will also lead to prevention of repeated hospitalization and transplantation, and to decreasing national medical costs.
This research aims to investigate actual daily lifestyle leading to continuous self-management after LDLT, by interviewing transplantation survivors of over 5 years on their lifestyles from various angles, such as meals, rests, and human relationships.