title: Living Kidney Donors Who Develop Kidney Failure: Excerpts of Their Thoughts.
abstract: Psychosocial data about living kidney donors have been collected for almost 5 decades now. To date, however, no study has provided any psychosocial follow-up of donors who developed a serious health problem such as end-stage renal disease (ESRD).
  
  
  
  Donors who developed ESRD 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. We contacted 38 individuals who met these criteria, and 22 participated (58%). Two were subsequently excluded from analysis.
  
  
  
  Twenty qualitative interviews were analyzed. Five findings are described: (1) donors describe the decision-making process as spontaneous and fast; (2) donors describe lack of appreciation for the need for post-donation self-care; (3) donors do not regret donating despite the adverse outcome; (4) donors advise future donors to have in place emotional and physical support post donation; and (5) donors appreciate the opportunity to tell their story from being a living donor to living with ESRD, which virtually all perceive as 2 separate unrelated events.
  
  
  
  Most donors are positive about their donation decision and experience and would donate again, despite developing ESRD themselves. They propose some important changes to the decision-making and informed-consent processes. Our data are reassuring regarding lack of donor regret, but highlight the need for living donor transplant programs to ensure that living donors understand their long-term risks and receive appropriate life-long follow-up care to minimize these risks.
authors.affiliation: Georgetown University School of Medicine, Washington D.C., USA.
authors.forename: Colin M E
authors.initials: CM
authors.lastname: Halverson
authors.forename: Jackie Y
authors.initials: JY
authors.lastname: Wang
authors.forename: Michael
authors.initials: M
authors.lastname: Poulson
authors.forename: Jennifer
authors.initials: J
authors.lastname: Karlin
authors.forename: Megan
authors.initials: M
authors.lastname: Crowley-Matoka
authors.forename: Lainie F
authors.initials: LF
authors.lastname: Ross
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology*; D016030:Kidney Transplantation; D019520:Living Donors / Q000523:psychology*; D008297:Male; D008875:Middle Aged