When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I wasn’t familiar with the disease, so I set out to learn everything I could about it. I wanted to understand each test I would undergo and each medication I was taking. After receiving the gift…
What an interesting month August has been. Regular readers of my column may recall that the month started with a discussion of a new comorbidity in my post-transplant world. In subsequent columns, I wrote about how to explain your chronic illness, responding when opportunity knocks, and…
The end of life is a period fraught with emotion. Losing someone who touched our lives creates a sudden void. I’ve witnessed alliances form following the passing of a family member, usually because there are opposing views of what the recently deceased would want. These rifts don’t always heal. But…
Writing “Make Every Breath Count” for you each week is an opportunity for me to share my journey, which is a form of therapy for me. It’s an outlet to process my experiences with idiopathic pulmonary fibrosis (IPF) and receiving a bilateral lung transplant. Recently, my column…
Some of the most important interactions in our professional lives do not occur at work, at the boardroom table, or even in an office. Often, they occur during brief introductions or chance meetings. The challenge for business leaders regardless of industry is how to briefly explain to someone what they…
The idiopathic pulmonary fibrosis (IPF) journey is, if nothing else, full of surprises. Some of those surprises come in the form of comorbidities, which could be a result of age, a suppressed immune system, or simply luck of the draw. The comorbidities we face are as unique as we…
When is a larger number the better choice? It depends. Recently, I’ve noticed some people in the pulmonary fibrosis (PF) community embracing numbers in studies without understanding their context. In terms of dollars, bigger numbers are better if you’re talking about savings, but smaller numbers are better if you’re…
How much of a powerhouse in the world of rare disease medicine do you have to be to effect change? Advocacy is tough, especially when you’re trying to influence organizations that are responsible for federal policy. So where to start? How about starting with a single voice? The biblical story…
Have you ever experienced a period in your life when nothing seemed to go right? While that may seem an odd question for those in the rare disease community, in my case, sadly, it’s not rhetorical. June has altered some of the best-laid plans, and that trend has flowed into…
July is a month of celebration at our house. Though it begins with the Fourth of July, my personal “Independence Day” is on July 10 — the day I received a double-lung transplant in 2021. It’s a celebration tempered with reverence for the beautiful lungs my donor gifted me.
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