Carrying the weight of the world on your shoulders can be exhausting. Those of us touched by rare disease — whether as a patient, caregiver, loved one, or friend — understand that anxiety can be triggered by almost any activity. Examples might include anticipating a medical procedure, awaiting test results…
Make Every Breath Count – a Column by Samuel Kirton
Have you ever come across a painted rock? Are you familiar with the concept? People paint rocks and leave them in public areas for others to find. What they paint on the front of the rock is completely up to them. The underside typically offers information about the person…
I was only 59 when I was diagnosed with idiopathic pulmonary fibrosis. I still had so many things to do, and many life experiences were waiting for me. I hadn’t yet walked my daughter, Heather, down the aisle. I didn’t have grandchildren. There were places my wife, Susan,…
You see them before and after you see a doctor. They are often the first person you see upon waking from anesthesia. They hold your hand during the difficult part of a procedure. They see you at your weakest state and help return you to health. Sadly, in some cases,…
Are there sounds you associate with your happy place? Perhaps it’s a smell. For me, it’s the sound of a metal whisk in a metal bowl, the rhythm of a chef’s knife prepping ingredients, the aroma of a mirepoix as it begins to sweat. Food is my love language. I’ve…
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…
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…
