Sam Kirton started his column in November 2021 and writes from his home at Lake Anna, Virginia, where he lives with his wife Susan. His diagnosis at age 59 with idiopathic pulmonary fibrosis in January 2017 began a journey of awareness and advocacy. Sam was listed for a lung transplant on March 19, 2021 and received a bilateral lung transplant on July 10, 2021. This was quite the change from his career as a special agent for the Office of Special Investigations and as a corporate security executive. Sam plans to share his journey so you, too, can make every breath count. You can follow Sam’s thoughts on Twitter or LinkedIn.
Have you seen the Apple TV+ series “Ted Lasso“? In it, Lasso is a fictional U.S. football coach who was recruited to manage a soccer club in the U.K. He was recruited because he knew nothing of…
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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…
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…
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,…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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