Living with a rare disease is expensive. While I agree with the cliches that “money can’t buy happiness” and “time is more valuable than money,” the limited financial aid available to patients stresses me out. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016, I wasn’t thinking…
A Newsweek article from a few weeks ago was headlined, “Washington, D.C., Endures Most Blistering Heat Wave in Nearly 100 Years.” As I write this, another article, this one from The Washington Post, just dropped, warning that “D.C. area begins fifth heat wave amid one of its…
Having the support of a loved one is a crucial aspect of the journey with chronic illness. Not having that support can make one feel alone and vulnerable. Conversely, the presence of a supportive partner, family member, or friend can help a patient build the emotional strength that is needed…
Oxygen is necessary for sustaining human life. Most people find the concentration of oxygen in room air (about 21%) to be adequate. For patients with pulmonary fibrosis, this concentration is often inadequate, making supplemental oxygen a life-sustaining necessity. When I was diagnosed with idiopathic pulmonary fibrosis…
When I was discharged from the hospital following my bilateral lung transplant, it was the beginning of a new segment of my journey. I went into surgery on July 10, 2021, and was discharged on July 20. This was about three and a half years after my diagnosis…
About 28 or 29 hours after the completion of my bilateral lung transplant, I was extubated. I took my first breath on my own with my new lungs. It was the beginning of my road to recovery. When I was diagnosed with idiopathic pulmonary fibrosis (IPF)…
On this day three years ago, at 9:03 a.m. ET, my phone rang. Michelle Schreffler, one of the nurses at Inova’s Advanced Lung Disease Program and Lung Transplant Program, said, “We have a lung offer for you.” Schreffler made that call with two of my other nurses,…
“Who is this woman?” I wonder as I look at a recent photo of myself. I hardly recognize the person looking back at me. Her face has changed. I haven’t looked at myself in the mirror lately. I’ve been too self-conscious. What happened to that vibrant and bright young lady…
Three years ago, my life looked very different than it does today. I was at the apex of getting my affairs in order. I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF), which is a chronic, progressive, and incurable lung disease. I still recall my doctor,…
“They’re here!” Much like the scenes in movies where grandparents see their grandchildren arriving, I shouted those words on Father’s Day to let my wife, Susan, know it was game time. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, there were things I hadn’t…
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