Le parcours des transplantés est un parcours hors norme de par les conditions physiques et psychologiques de la greffe d’organe. Parfois, un séjour aux soins intensifs fait partie de ce parcours. Le vécu aux soins intensifs et aux soins continus les confronte à des expériences décrites dans la littérature scientifique en termes d’hallucinations, de délires, d’accès psychotiques, d’anxiété dépressive, de syndrome des soins intensifs ou relocation syndrome. Autant de mots qui empêchent les patients de pouvoir en parler librement car ils questionnent leur santé psychique. Dans des entretiens, 22 greffés du cœur, des poumons ou du foie montrent que ce vécu ne se superpose pas aux diagnostics donnant une image négative et pathologisante. Leurs expériences hors normes remettent en question leurs valeurs existentielles et doivent être acceptées comme faisant partie d’un parcours hors du commun, mais fréquent, qui emmène les transplantés vers un rapport à la mort et à la vie différent.

Transplantation leads the patients through an out-of-the-norm illness course as the context and the treatments are accompanied sometimes with extreme physical and psychological constraints and strains. For some patients, a passage in an intensive care unit is part of this illness and treatment course. The experience of an intensive care context and of continuous care confront the transplanted patient to extreme negative experiences: hallucinations, delusions, psychotic experiences, depressive anxiety and intensive care unit syndrome or relocation syndrome. Pathologizing diagnoses negatively perceived by the patients, preventing them from talking freely about these disturbing experiences. In interviews conducted in a longitudinal qualitative study, 22 heart, lung and liver transplanted patients discussed their out-of-the norm experiences during their intensive care unit stay after transplantation. Patients described how these out-of-the-norm experiences questioned their existential values. Negative but also positive experiences were mentioned. These results are compared to the available theoretical backgrounds and research, which do not account for the emotional transformation and awareness that accompany these out-of-the-norm experiences. Medication, a threatening environment and invasive care can provide some explanations that do not correspond to the reality and the emotional presence of these experiences which leave long lasting traces. Non-normative psychological support is discussed in the context of existential therapy background and in the perspective of the new propositions in consultation for the future DSM-V. Transplantation confronts the patients and the professionals to the unexpected and requires new interpretative paradigms in order to account for the patients’ experience. These results are disturbing as physical and psychological suffering is mentioned in spite of medication and attentive care. These out-of-he-norm experiences are grounded in a medical objective reality, and should be confronted to the medical history of the patients.