Do you have pets? If so, have they been good companions? Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I faced periods of loneliness and isolation. That was especially true during the COVID-19 pandemic. My wife, Susan, has always been a cat person, while…
Make Every Breath Count – a Column by Samuel Kirton
Solutions are seldom permanent. I want you to let that marinate for a minute. When I learned I had idiopathic pulmonary fibrosis (IPF) in January 2017, I was several months into my diagnostic journey. As I learned more about IPF and patient experiences, I concluded that there wasn’t…
The journey of a pulmonary fibrosis patient and a post-transplant patient have one big thing in common: We must take the correct dose of the proper medications at the appropriate time. So what happens when much of the pharmacy infrastructure fails on a random weekday? Medication management is…
For many years, my relationship to the rare disease community was that I had stepsiblings with ataxia, a neurological condition without a cure or effective therapy. Little did I know I’d one day have my own rare disease. In January 2017, I was diagnosed with idiopathic pulmonary…
I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and subsequently received a bilateral lung transplant in July 2021. With IPF, whether you’re pre- or post-transplant, one of the things you learn quickly is that the growth of bacteria in the lungs can be deadly.
“I’m sorry” is a simple, two-word phrase I’ve used many times. For me, it can take two forms: It can be a statement of regret, or it can be a question. Because of my hearing loss, I use the latter to indicate that I need someone to repeat what was…
When I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF), I had gone under anesthesia only twice in my 59 years. Since my diagnosis, and especially following my bilateral lung transplant in 2021, I’ve required different types of anesthesia for more than 30 procedures. Most…
When I was diagnosed with idiopathic pulmonary fibrosis in early 2017, my care team went to work ensuring my quality of life was the best it could be given the circumstances. A bilateral lung transplant in 2021 offered me a second chance at life, but getting the transplant required a…
Seven years ago, I sat in a hospital examination room in shock. I had just been diagnosed with idiopathic pulmonary fibrosis (IPF) and given two to five years to live. The doctor suggested I get my affairs in order. Then, before I knew it, my care team had begun…
Life with a rare disease is often a journey of discovery. With each test comes the possibility that my healthcare team will identify a new issue I’m facing. I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and had a bilateral lung transplant four years later. Because of…
