Abstract
Background: This case describes the discrepancy in perception of adherence between the patient, the family and multidisciplinary teams. A. is a 26y old woman, living in Belgium since 2019. She was diagnosed with CF at birth, genotype N1303K, G85E. Pre-transplantation she had multiple CF related complications, including CFRD, repeated cholangitis, DIOS and liver fibrosis. She has a chronic multiresistent Burkholderia cenocepacia. In 2021 she was referred and listed for a liver-lung transplantation (LTX). After two weeks of ECMO, she was transplanted in May 2022. Since then she suffered from multiple severe, life-threatening complications. After LTX she stayed in the hospital for 7 months (five months ICU), during which she became dialysis dependent. She was prescribed multiple supportive medication (painkillers, anxiolytics, antipsychotics and antidepressants), which were gradually reduced.
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