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…
Make Every Breath Count
— Samuel Kirton
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 LinkedIn.
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What do we want? A therapy and a cure! When do we want it? Now! Call-and-response is a tactic often used in protests. Raising many voices together to deliver the same message is a powerful force. Together as a community, we can deliver that message. The Pulmonary Fibrosis Foundation‘s (PFF)…
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…
How do you value something that doesn’t have a standard of measure? If you invest in a stock, there is a cost per share. You can see its value at the moment of investment. Over time, you’ll witness both gains and losses to that value. When you sell the stock,…
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I became a patient at the Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia. Inova is one of 81 locations included in the Pulmonary Fibrosis Foundation’s Care Center Network (CCN). One…
Long before learning I had idiopathic pulmonary fibrosis (IPF), I supported the advocacy efforts of the National Ataxia Foundation (NAF). Like pulmonary fibrosis, some forms of ataxia are rare diseases. One of them, spinocerebellar ataxia type 3, also known as Machado-Joseph disease, took the lives of three…
In the 1939 Frank Capra film “Mr. Smith Goes to Washington,” a naive young man played by Jimmy Stewart is appointed to fill a vacant seat in the U.S. Senate. He was determined to make a difference and perhaps change the world. Faced with the challenges of the political arena,…
“It was July 9, 2021, at 9 a.m. NBC’s ‘Today’ show was on television in our house that morning. I was in my home office going through my morning routine while my wife, Susan, was downstairs in her home office. “When my cellphone rang, I recognized the number as the…
On Jan. 18, Larry Runyon passed away at 76. Larry was a warrior fighting idiopathic pulmonary fibrosis (IPF) for more than 15 years. He’s certainly not the first person I’ve known who has passed because of IPF, but he is the first one to pass whom I’ve known for…
There are certain moments in our lives when a single event becomes indelibly etched into our memory. And the significance of such moments is dictated by each of us. Think about that for a minute. What moments are etched into your memory? Have you dealt with the loss of a…
Minutes after I’m wheeled into the operating room, everyone stops — a timeout. Lying on my back with an awesome view of the ceiling, the calm and quiet of the room are very noticeable. I’d been connected to various leads, used to monitor everything from my heart rhythm to my…
Shortly after I was diagnosed with idiopathic pulmonary fibrosis (IPF), I was on a walk and spotted a leaf in the shape of a heart. For some reason, the beauty of it struck me. It was a sign; nature had left me a message. I collected the leaf and…
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