Background: Psychosocial data about living kidney donation have been collected for almost five decades. The results are almost uniformly positive, even in the early years when graft failure and recipient death were the norm. To date, however, no study has provided psychosocial follow-up of donors who develop a serious health problem like end stage renal disease (ESRD).

Objectives: The aims of this study were: 1) to explore the impact of donation and subsequent ESRD on family dynamics; and 2) to explore patients' experience with the healthcare system and finances.

Methods: Donors were invited to participate in a qualitative interview if they met one or both of the inclusion criteria: 1) developed ESRD within 10 years of donating; and/or 2) lacked health insurance at the time of donation. Parent donors were excluded. Of the 50 who met these criteria, 42 were contacted and 23 participated (55%). Three were subsequently excluded from analysis: two because they donated before insurance covered kidney transplantation and one nondirected donor because all the others had donated to first-degree relatives.

Results: Twenty qualitative interviews with living donors who developed ESRD were analyzed. Five findings are described: 1) donors describe the decision-making process as spontaneous and fast; 2) donors describe a lack of appreciation for the need for post-donation self-care; 3) donors do not regret donating despite the adverse outcome; 4) donors would advise future donors to have in place emotional and physical support post-donation; and 5) donors appreciate the opportunity to tell their story from living donor to living with ESRD which virtually all perceive as two separate unrelated events.

Discussion: Most donors are positive about donation and would do it again, even when they develop ESRD themselves. However, they do propose some important changes to the decision-making and informed consent processes. Although our data are reassuring, we should not be complacent about donors' understanding of the decision-making process or of the risks and consequences of living kidney donation. Improved communication between living donors and the healthcare community is a first step to ensure that living donors understand their long-term risks and receive appropriate life-long follow-up care.

CITATION INFORMATION: Ross L, Halverson C, Wang J, Poulson M, Karlin J, Crowley-Matoka M. In Their Own Words: Living Kidney Donors Who Develop Kidney Failure. Am J Transplant. 2016;16 (suppl 3).

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