Last week, I participated in one of the most unique speaking opportunities I’ve had on my journey with pulmonary fibrosis. I was asked to provide a patient’s perspective to a caregiver support group. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, it caught…
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Living in Texas means facing an unpredictable climate. One minute, the skies are blue and it’s sunny, and the next, thunderstorms and tornadoes are rolling in without warning. I’ve lived in Texas all my life and still can’t keep up with the changes. Having pulmonary fibrosis (PF) doesn’t make…
Looking at the person sitting nearby, I’ll often say, “So what are you in for?” While to me the question is slightly reminiscent of a conversation between two inmates, that’s not the case in this example. This conversation starter also works at a transplant clinic. I was diagnosed with…
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,…
