Introduction: Creating an unlimited supply of organs through xenotransplantation (XTx) with gene edited pig kidneys could obviate the waitlist, and the experience of the first humans is vital to developing comprehensive informed consent and patient-centered outcome metrics. The objective of this study is to document the narrative experience of a prior living kidney donor and the longest-living human to receive a pig kidney transplant.
Methods: This study employed a qualitative single-case narrative inquiry to explore lived experience with a pig kidney transplant through in-depth, semi-structured interviews. Data collection consisted of 3 interviews with the same recipient conducted in-person, each lasting approximately 1 hour in duration. The interview guide included open-ended questions designed to elicit the participant’s lived experiences, perceptions, and insights regarding the experience of XTx, including perceived quality of communication, care, and quality of life. Interviews were audio-recorded and transcribed verbatim. Approval was obtained from the IRB, and the patient provided informed consent before participation. 
Results: Overall, the patient perceived that living with the XTx for 130 days was successful, even after graft rejection and explant. At 14 days post-surgery, the patient stated, “The xenotransplant has saved my life, has given me a second chance on life. The experience has been remarkable.” Three days post-removal of the xenograft, the patient continued to express her gratitude for the transplant and the opportunity for the field to learn from the experience, sharing, “I feel like the education shouldn't stop just because we had a let-down, but I don't want to say failure. I wanna say let-down because you know, we can go back and learn from the failure and replace the let-down.” The participant noted that their care team clearly explained the risks, benefits, and alternatives to receiving a xenotransplant prior to surgery and maintained a similar level of communication while they monitored her for evidence of rejection: “When I know you're gonna know and we'll know together, we'll learn together." When discussing quality of life, the patient noted improvements in their psychological, social, and functional wellbeing post-transplant, including a level of energy she had not previously experienced. Unfortunately, that surge of energy ceased with the explant, but the patient remained positive about her own future and other patients considering XTx, stating “I see it as the future. It's the only future to me. For people like me.”
Conclusion: The unique experience of being the longest living person with a pig kidney can be used to support the development of comprehensive informed consent and patient-oriented metrics for quality of life as we move into clinical trials for XTx.