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

To explore heart transplant recipients' perspectives on unanticipated challenges following transplantation and to identify experiential insights that may inform patient-centered education.

Exploratory qualitative descriptive study.

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.

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.

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.

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.

Problem: Limited transparency regarding lived experiences and realities of recovery after heart transplantation.

Heart transplant recipients often face unanticipated physical, psychological, and social challenges.

Findings and an electronic resource can help inform education for patients and families about the realities of the heart transplant journey.

This study adheres to the Standards for Reporting Qualitative Research (SRQR) guidelines.

Heart transplant recipients contributed data through sharing lived experiences that informed analysis, interpretation, and development of a patient-centered educational resource.