What I Wish I Knew: The Reality of Heart Transplant Recipients

AIM(S): To explore heart transplant recipients' perspectives on unanticipated challenges following transplantation and to identify experiential insights that may inform patient-centered education. DESIGN: Exploratory qualitative descriptive study. METHODS: Data were collected using an anonymous, open-ended online survey distributed through a large international heart transplant support group using purposeful sampling. Participants responded to two open-ended questions addressing unanticipated challenges and advice for individuals awaiting heart transplantation. Data were analyzed using thematic analysis with independent coding and consensus development. RESULTS: Fifty-one heart transplant recipients participated. Participants described substantial gaps between expectations and lived experiences following transplantation. Two overarching domains emerged: what recipients wish they knew before transplantation and advice for individuals awaiting a heart transplant. Key themes included lack of education and transparency, development of chronic conditions, medication-related side effects, mental health challenges, and unanticipated physical and psychosocial challenges. Advice emphasized self-advocacy, realistic recovery expectations, prioritization of mental health, adherence to lifestyle recommendations, maintaining hope, and trust in the healthcare team. CONCLUSION: Heart transplant recipients frequently experience complex and unanticipated challenges extending beyond surgery and early recovery. Greater transparency and patient-centered education are needed to align expectations with lived realities. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Findings were used to develop an evidence based educational electronic resource to enhance informed decision-making, self-efficacy, and nurse-led conversations across the transplant continuum. IMPACT: Problem: Limited transparency regarding lived experiences and realities of recovery after heart transplantation. FINDINGS: Heart transplant recipients often face unanticipated physical, psychological, and social challenges. IMPACT: Findings and an electronic resource can help inform education for patients and families about the realities of the heart transplant journey. REPORTING METHOD: This study adheres to the Standards for Reporting Qualitative Research (SRQR) guidelines. PATIENT OR PUBLIC CONTRIBUTION: Heart transplant recipients contributed data through sharing lived experiences that informed analysis, interpretation, and development of a patient-centered educational resource.