We had never heard of IPF (Idiopathic Pulmonary Fibrosis later changed to Pulmonary Fibrosis Secondary to Sjogren’s Syndrome) until my husband David was diagnosed with it in 2013. We set out to learn as much as we could about the disease.
David’s brother Brian on the other hand was misdiagnosed for a number of years and had been treated for asthma ….we suspected that was wrong. He was finally correctly diagnosed in 2015 after a biopsy. He was placed on supplemental oxygen. A visit to a new lung specialist in Nov. 2016 who placed him immediately into the transplant program. On Dec. 28, 2016 he was bumped up to a priority on the transplant list but unfortunately he did not survive long enough to get it. If his doctor had paid attention to the familia possibility and started proper treatment one wonders if the end may have been different.
David on the other hand was lucky with an informed team and has remained relatively stable and not on oxygen yet. He was started on Esbriet in Oct. 2019 which has worked well for him. He also exercises regularly and lives each day with a positive attitude.