Seeking Palliative Care

I recently met with someone to talk about palliative care. I’m here to share my experience in hopes it will help you, too. My last column about end-stage PF had thousands of views and LOTS of comments, which shows how important it is to talk about these…

I am sure there is some underlying rule that a patient will have some type of pain when diagnosed with a chronic illness. Either that pain will come from the disease itself, or it will be a secondary symptom of it, such as inflammation, sore muscles, etc. Until…

Pulmonary fibrosis treatment OFEV (nintedanib) slows the progression of lung scarring, according to high-resolution scans used in a Phase 3b clinical trial. Computed tomography imaging demonstrated for the first time that six months of Ofev could reduce  the progression of patients’ lung fibrosis lesions, compared with a placebo. Two…

Those of you with idiopathic pulmonary fibrosis (IPF) likely have had to use supplemental oxygen. If so, you likely are aware of how labor-intensive it is to obtain and maintain oxygen equipment, and of the importance of using it safely in a variety of situations. These are things…

There is no shortage of literature on how important sleep is for all individuals, at any age. However, there is an added layer of importance for those living with a chronic illness. The bodies of people living with a chronic illness are working incredibly hard (including those with a lung…

The American Thoracic Society and Boehringer Ingelheim have established a two-year, $100,000 fellowship for idiopathic pulmonary fibrosis research. Pulmonary fibrosis is a group of lung diseases characterized by cough, shortness of breath, fatigue and low levels of oxygen in the blood. It involves the lungs becoming stiff and holding less air…

Kim Fredrickson, a patient columnist for Pulmonary Fibrosis News, is very aware that PF is shortening her lifespan, and it’s been hard for her to face her mortality. This reality guides how she spends her time, energy, and the decisions she makes. It also motivates her to get her…

Esbriet (pirfenidone) seems to have diminishing therapeutic effect after six months of treatment and possibly no benefit after one year in idiopathic pulmonary fibrosis (IPF) patients with advanced disease, a Greek retrospective study shows. The study, “Safety and efficacy of pirfenidone in severe Idiopathic Pulmonary Fibrosis: A real-world observational…

One of my frustrations as a pulmonary fibrosis patient is finding solid information about what to expect as my PF progresses. I’ve asked several doctors what to expect during the end stage of PF, but often get the same answer: “We’re not there, no need to talk…

Treatment with Esbriet (pirfenidone) reduces cough in patients with idiopathic pulmonary fibrosis (IPF), a new European study finds. The study, “Effect of pirfenidone on cough in patients with idiopathic pulmonary fibrosis,” appeared in the European Respiratory Journal. Its senior author was Dr. Marlies Wijsenbeek of the respiratory…