Columns

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…

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…

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…

Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I have crossed paths with many different people with varying responses to my disease. Because I am only 29, I am regularly reminded that being diagnosed with this disease so young is rare and, as a result, people are often…

Have you ever been so grateful to be part of a community, either in person or online, while at the same time desperately wishing that community didn’t have to exist? That is the vortex I am stuck in regarding all of the readers who follow my columns through…

I had an experience last week that reminded me of how I am still adjusting to my changing energy levels. A friend stopped by to visit and we had a nice time catching up. She was here for an hour and a half, and I was sitting…

With the exception of being on antibiotics again for a bacterial infection that tried to start in my ears, nose, and throat, I am feeling pretty well these days. I am tired, but that is to be expected, and most of my harder days now are from the…

After reading other columns on this site, I’ve come to realize I’m not the only person with a lung disease dealing with sleep issues. After being diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, I don’t recall sleep ever having been a problem until recently, in the last…

  One of the hard, but necessary things that we face as a PF patient is our mortality. I am very aware of my shortened life span, and think about every day. This reality guides how I spend my time, energy, and the decisions I make. It also…