Are you angry? If so, who are you angry with and why? I follow a number of social media groups associated with different rare disease communities. Lately, it seems that people are angry with the very groups advocating on their behalf. I must admit, that intrigues me a bit. When…
“It is only because of your generous gift of life that I am here. This is the hardest letter I have ever composed. Trying to capture the full range of emotions in a single letter to say thank you is more difficult than I imagined.” These are the words that…
In last week’s column, I wrote about the preparations required for my first international vacation since 2019. Since I was diagnosed with idiopathic pulmonary fibrosis in January 2017 and received a bilateral lung transplant in July 2021, many aspects of my life have changed. The most…
My wife, Susan, and I have traveled around the world by trains, planes, ships, and automobiles finding new adventures. We are now in Amsterdam — our first international trip since 2019. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, my care team encouraged me…
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…
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…
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