Face mask: check. COVID-19 vaccine card: check. Extra mask: check. Electronic vaccination card: check. Anxiety: check. More than 25 months after the start of the pandemic, my wife, Susan, and I returned to the theater. The National Theatre, located in the heart of Washington, D.C., has always been…
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)…
The federal transportation mask mandate has been extended through May 3. The city of Philadelphia has reinstated mask requirements in public indoor settings. People in the U.K. are watching the spread of a new recombinant COVID-19 variant. The Chinese government has reportedly implemented either full or partial lockdowns in…
Every day in my post-transplant world begins with morning doses and ends with evening doses of medication. I also take doses in between, totaling 33–34 pills a day. Medication management is central in the life of a transplant recipient. I received a bilateral lung transplant on this past…
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. 31, 2017, Dr. Steven Nathan, a pulmonary disease expert, sat on a stool in a clinic room across from my wife, Susan, and me, and confirmed my diagnosis of idiopathic pulmonary fibrosis (IPF). The gravity of my diagnosis hit Susan especially hard, to the point where every…
The word “identity,” which refers to a person’s “distinguishing character or personality,” according to Merriam-Webster, may sound simple to understand, but it’s actually often confused with other terms. Before you read any further, take a moment to think about your own identity. When you have a description in mind, please…
It’s normal for people to come and go in our life. Our circle of friends changes when we change schools, start a new job, get married or divorced, and have children. Being diagnosed with idiopathic pulmonary fibrosis (IPF) had the same effect on my group of friends. As my IPF…
Dictionaries play many roles in our lives. In early childhood, we use a dictionary to associate pictures with words. In early education, we learn to use a dictionary to define unfamiliar words and look for alternative meanings. In the computer age, we create spreadsheets with data dictionaries. Dictionaries fill in…
Internet scams are widespread and can infiltrate every aspect of our digital presence. The prevalence of online dating scams, for instance, was recently highlighted in the trending Netflix documentary “The Tinder Swindler.” Scams have become particularly rampant in rare disease communities, and are spreading rapidly via social media platforms,…
The availability and quality of healthcare patients receive is often based on where they live and what they can afford. This is especially true for those among us with a rare disease. That’s what health equity is all about. It belongs under the umbrella term “social justice,” which encompasses a…
During the course of having idiopathic pulmonary fibrosis (IPF) or any other rare disease, the role of the caregiver requires a large measure of patience, an ability to multitask, and the capability to pivot without knowing what lies ahead. Caregivers, whether working alone or as part of a team,…
Is 90% of a message’s effectiveness dependent upon the way it is delivered? In terms of our rare disease, how important are the words we use to describe it? Many of us with a rare disease only learned about it when we were diagnosed, so we shouldn’t be surprised…
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