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…
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…
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