I am learning to hold onto things loosely. To me, holding things loosely as a PF patient means being active in the pursuit of my health, taking care of things I need to, and letting go of things that are out of my control. I’m shifting my…
Hold Onto Things Loosely
A comprehensive Swedish study reveals low use and lack of persistence with Esbriet (pirfenidone) treatment among patients with pulmonary fibrosis (PF). Results of this real-world study were presented in a poster titled “Pirfenidone Use in a Swedish Cohort of Patients With Pulmonary Fibrosis” during the…
The National Institutes of Health (NIH) has granted $12 million to researchers at Cedars-Sinai Medical Center to continue studying two lung diseases — idiopathic pulmonary fibrosis and chronic lung allograft dysfunction. Idiopathic pulmonary fibrosis (IPF) is characterized by progressive scarring of lung tissue which leads to difficulty breathing. Chronic lung allograft dysfunction is a complication…
FibroGen’s investigational compound pamrevlumab has received fast track designation by the U.S. Food and Drug Administration (FDA) for the treatment of idiopathic pulmonary fibrosis (IPF). The agency’s decision follows review of the double-blind PRAISE Phase 2b study (NCT01890265) results, which showed that, over 48 weeks, intravenous…
Since my idiopathic pulmonary fibrosis (IPF) diagnosis in early 2016, I have been committed to advocating for myself and others who suffer from this fatal lung disease. So far, my advocacy efforts have been on a small scale. They include a few speaking engagements, awareness posts through social…
September is recognized as Pulmonary Fibrosis (PF) Awareness Month, and the Pulmonary Fibrosis Foundation (PFF) is suggesting a host of ways to get involved in increasing awareness for the disease. Last year, PFF’s awareness efforts on social media reached 915,000 people. This year, the organization hopes to increase that…
Two weeks ago, I went to the University of California, San Francisco for my last test for lung transplant evaluation. I had a left heart and right heart catheterization to test the pressure in my lungs and to see if I had any blockages in my heart.
The American Lung Association is promoting Pulmonary Fibrosis Awareness Month through September with educational videos featuring lung transplant recipient Randy Cooke, who shares his tips and experience in dealing with idiopathic pulmonary fibrosis (IPF), the most common form of the disease. September was originally designated Pulmonary Fibrosis Awareness…
There is nothing quite like having someone truly understand what you are going through. Living with a life-threatening illness like idiopathic pulmonary fibrosis (IPF) can feel excruciatingly isolating. While this is true for anyone living with IPF, it feels extra lonely when you are a young adult dealing…
A research team from the University of Arizona (UA) College of Medicine – Tucson was given a $4.4 million grant from the U.S. Department of Defense to study two experimental treatments believed to delay or possibly reverse excessive scar tissue formation in the lungs of patients with…
