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,…
Columns
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…
For the first time, we see that about 50% of people with cystic fibrosis (CF) are adults. While CF still may ring as a pediatric disease to those who have been familiar with CF for many years, we must adapt our mindset to accommodate the adult population. When I was…
By now, we’ve all heard that steps have been taken toward repealing the Affordable Care Act (ACA). Even within my network of friends and family, I’ve heard mixed responses. There are those who detest the ACA, those who believe it should be protected, and those who think it should be…
Editor’s Note: In his first post for Cystic Fibrosis News Today, Gunnar Esiason writes about his experiences in managing CF entirely on his own for the first time when he went away to college in 2009. Gunnar’s column explores the uncertainty that surrounds those with cystic fibrosis as they fight to live…
“Brennen Reeves just wanted to be normal. The only problem: the fatal lung disease, cystic fibrosis. The only solution: a double lung transplant. Hilarious and heartbreaking, this solo show is one man’s journey to live beyond the odds. Co-created and directed with David Lee Nelson (Elephant in My Closet, Status Update).”…
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