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…
Make Every Breath Count – a Column by Samuel Kirton
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…
I regularly pick up and read my journal from the early days after my diagnosis of idiopathic pulmonary fibrosis (IPF). I’ve shared some of those thoughts in earlier columns. The entries aren’t that different from other people’s journals, and some are intimate thoughts intended only for me. The…
American comedian Bill Engvall is known for his punchline “Here’s your sign,” which he’d often say in response to an outrageously obvious question. I recently experienced two “here’s your sign” moments of my own after wondering if I’d contracted the virus that causes COVID-19. On Monday, April 3, I…
A recurring topic of discussion among the rare disease community is whether people would consider donating an organ. I’ve heard varied comments, such as “No one would want any of my organs,” “My only good organ is my transplanted one, and it cannot be reused,” and “I don’t want to…
On Tuesday, Sept. 15, 2020, I received an email asking if I would participate in an exercise on how deceased donor organs are allocated. The opening statement read: “The Organ Procurement and Transplantation Network [OPTN] is developing a more equitable system of allocating deceased donor organs. The new approach, continuous…
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) on Jan. 31, 2017, I quickly understood three things about this disease. First, it’s chronic. Second, it’s progressive, though it progresses at different rates in everyone. Finally, there is no cure. One therapy available for IPF is…
One of the most certain parts of our lives is the order of the calendar. “Thirty days has September,/ April, June, and November,/ All the rest have thirty-one,/ Save February at twenty-eight,/ But leap year, coming once in four,/ February then has one day more.” Some might call this a…
