“What is the hardest part about living with lung disease?” A curious friend recently asked me this question, and my answer could likely far exceed the maximum word count for this column. Is it the chest pain and wheezing, which often feels like a panic attack that never ends? The…
It’s hard to explain all the emotions a person suffering from a chronic illness goes through. At times it makes you feel sad, angry, and alone. At others it empowers you to be spontaneous, love deeper, and push yourself to set goals you want to fight to live for. Whichever…
Perhaps one of the most exciting parts of being both a patient and a scientist with CF is seeing just how quickly the field is growing. And fortunately, you don’t need an “insider’s knowledge” to see the changes. The CFF Pipeline to a Cure ably captures the exciting eruption of companies…
If I were to introduce myself to you through this column, there are a great many things I could write. I might explain that this actually isn’t my first column (having started my lifelong long dalliance with op-ed at the tender age of 13), or that writing often is…
Life can change in a blink of the eye. One moment you may be on vacation in Hawaii, and the next you can be on a ventilator being medically evacuated back to the mainland. Being hospitalized unexpectedly is never a happy feeling. Instead, it can bring feelings of guilt, uncertainty,…
Last week, I had the opportunity to accompany Vertex Pharmaceuticals as the Tennessee State Senate declared May 2017 Cystic Fibrosis Awareness Month. Sen. Steve Dickerson, R-Nashville, sponsored the resolution, which received unanimous support. The month of May is also recognized as Cystic Fibrosis Awareness Month on a national level. So…
After receiving a double-lung transplant, I found happiness within the struggle I have imagined and pushed myself to understand the concept of living a “normal” life, despite having a genetic disease since I was a child. I was diagnosed at birth with cystic fibrosis in June of…
The CF community was delivered great news the other week: Vertex’s tezacaftor/ivacaftor combination treatment significantly increased lung function (ppFEV1) in patients 12 years or older with certain mutations of the CFTR gene (cystic fibrosis transmembrane conductance regulator).F 508 For those who are new to, or not…
No matter how good I feel, there’s always a sense of anxiety and uncertainty when I walk into a routine CF clinic visit. Thoughts swarm my head as my name is called to walk back into the office: What if my PFTs are down? What if my blood tests…
Airports can be stressful. With the unpredictable delays, cancellations, and upsets of travel, it’s only natural to take some precautions before going on a business trip or vacation. However, preparing for travel becomes inherently more complicated when the traveler has a chronic illness like cystic fibrosis. I wish…
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