The sound of overhead explosions and bright flashes of light caused by fireworks. The sound of squealing tires followed by breaking glass. The smell of smoke and the sound of a smoke detector. The sound of the alarm on your oxygen concentrator in the middle of the night. Each of…
Columns
I have learned a lot about idiopathic pulmonary fibrosis (IPF) over the years. Following my diagnosis in 2016, I read everything I could about this life-threatening lung disease through online forums, research articles, and various websites. My biggest takeaway was that disease progression is nonlinear and looks…
The calendar of any rare disease patient is a marvel, with its complexity and efficiency. I’ve become both a master and a failure in constructing mine. I continue to miss the mark on making time to live life to the fullest. My schedule gained new elements when I was…
My name is Sam, and I read a lot. I enjoy reading. I’m not asking for help or seeking an intervention. I read a wide variety of material and have favorites across many different genres. In the fiction category, I enjoy the Mitch Rapp series, originally by Vince Flynn. In…
Have you ever tried to explain to someone who has never experienced a rare disease how patients can develop lasting relationships with their care team? I have, and it’s often met with skepticism. Many people see their physicians only once or twice a year. But that isn’t the case for…
When I first began experiencing symptoms of idiopathic pulmonary fibrosis (IPF), my condition worsened quickly and kept me from doing many activities I enjoyed. And yet, it took 13 months for me to receive a diagnosis. This time frame felt like an eternity and left me and…
One of my fears about my pulmonary fibrosis (PF) and lymphocytic interstitial pneumonia (LIP) is how vulnerable I am to catching any virus that presents itself. I recently had to face this fear. I’m finally returning after battling a long haul of pneumonia. It was a painful…
A pulmonary fibrosis journey is marked by many firsts, especially in relation to medical tests. Prior to my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I had a primary care physician, a gastroenterologist who performed routine colonoscopies, and a surgeon who repaired a hernia. That…
What do you do with information you didn’t necessarily ask for or expect? While attending support group meetings or scanning social media groups for those with pulmonary fibrosis, I often hear or read comments from people struggling with their emotions. They may be newly diagnosed or recently denied a…
Michel de Notredame, more commonly known as Nostradamus, was a French astrologer, physician, and to many, seer. He recorded his prophecies in the 16th-century book “Centuries,” and some consider his view of the future incredibly accurate. More recently, Eric Arthur Blair, using the pen name George…
