Pulmonary fibrosis: Lived experience panel webinar

In this webinar, our Pulmonary Fibrosis (PF) patient panel Linda, Lawrie, Vivienne and John share their learnings and inspiring stories of their journey with PF from diagnosis and treatment, including medication and oxygen, through to the pre and post lung transplant journey. A/Prof Lauren Troy joins to chare her clinical knowledge and perspective on each of the topics.

Linda was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2015 after years of chronic cough. Initially misdiagnosed with viral bronchiolitis, her condition worsened, leading to a correct diagnosis of fibrosis. Despite the challenges, Linda focuses on staying well and helping others by sharing her journey. She emphasises the importance of staying active, losing weight, and maintaining a positive outlook. Her participation in drug trials has been crucial, and she currently benefits from regular medical care and is in a stable condition due to anti-fibrotic medication.

Laurie, diagnosed with IPF in late 2019, experienced a persistent cough that led to his diagnosis. Initially hesitant about a biopsy, he found a supportive specialist who prescribed anti-fibrotic medication, significantly improving his symptoms. Laurie maintains a positive mindset, stays active, and enjoys caravanning and teaching photography. He highlights the importance of a reliable healthcare team and staying informed about the disease.

Vivian, a retired nurse with interstitial lung disease linked to anti-synthetase syndrome, shares her experience with oxygen therapy. Diagnosed in 2015, she relies on a portable oxygen concentrator for mobility and independence. Vivian emphasises the practical aspects of living with oxygen, including travel tips and the importance of a supportive medical team. Despite additional health challenges, she remains active, using an electric trike to enjoy outdoor activities.

John, diagnosed with IPF in 2012, underwent a lung transplant in 2021 after an acute exacerbation. His journey involved extensive medical evaluations and a challenging wait for a suitable donor. Post-transplant, John focuses on maintaining fitness and adhering to a strict medical regimen. He expresses deep gratitude for his donor and the support of his medical team and family. John’s story underscores the importance of fitness, discipline, and a strong support network in managing IPF and recovering from a transplant.

These personal stories highlight the diverse experiences of living with IPF and the importance of medical care, lifestyle adjustments, and support networks in managing the disease.