I’m Grateful for Doctors Who Understand IPF
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…
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.
Featured Post
Jascayd is approved! So when can we start taking the IPF treatment?
For the first time in more than 10 years, idiopathic pulmonary fibrosis (IPF) care teams and patients will have a new treatment option following the Oct. 7 approval of Jascayd (nerandomilast) by the…
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IPF Didn’t Change My Identity
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…
My Circles of Friends Have Overlapped During My IPF Journey
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…
Why I Created an IPF Dictionary After My Diagnosis
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…
Identifying and Avoiding False Health Claims
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…
Ensuring No One Is Underserved Along Roads Less Traveled
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…
Celebrating Our Caregivers
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…
Learning How to Better ‘Market’ Ourselves With Rare Disease Advocacy
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…
We Must Keep Living Our Best Lives, Whatever Comes Our Way
How does a person with a chronic, progressive lung disease of unknown origin live their best life? How do they continue to live their best life in a pandemic? In the days immediately following…
Imagining a Future Generation Without Idiopathic Pulmonary Fibrosis
During an appointment at my clinic shortly after my idiopathic pulmonary fibrosis (IPF) diagnosis a few years ago, I had a conversation with my pulmonologist about clinical trials. That discussion led to…
Turning Pandemic Negatives Into Positives
I’ve found myself daydreaming lately about a return to normal. I long for the days when we didn’t need face masks, when I could see someone’s smile during a conversation, and when hand sanitizer…
The Unpredictable IPF Journey Brings New Adventures Every Day
“Every day is a new adventure!” This is often my response when someone asks how I’m doing. It also seems appropriate when looking forward to what 2022 may hold for me. I faithfully use…
