Five years ago today, the phone rang early in the morning. “We have lungs,” the voice on the other end announced. The first words I heard that day were months in the making. My mom, Holly, had been in the intensive care unit for almost 12 weeks following an…
Columns
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…
Recurrent lung infections are exhausting, both physically and mentally. As a patient living with idiopathic pulmonary fibrosis (IPF), a progressive and life-threatening lung disease, respiratory infections have become part of my life. But that doesn’t mean they’re easy to deal with. When I read a fellow columnist’s recent post…
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 am regularly subjected to stories of trauma. Part of my role as a therapist is holding space for clients to disclose difficult situations and helping them to process distressing events in their lives. Thankfully, in my experience, it seems that a growing number of people are becoming comfortable with…
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.
My mom, Holly, was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2018. An acute exacerbation booked her a one-way ticket to the intensive care unit for a four-month wait for new lungs. Less than one year after her diagnosis, she emerged from an operating room at the University…
“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…
It has been two months since I last shared my thoughts in this column, and in that time, life has unfolded in ways I could never have anticipated. The lessons I’ve learned during this period have been profound, leading me to confront the blatant reality that life rarely adheres…
