Rare disease patients and caregivers have a lot to teach the world right now. No matter your role in the rare disease community, I would be willing to bet this is not the first time you’ve sheltered at home to avoid infection. While we may be used to taking precautions…
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It’s hard to focus on anything other than the COVID-19 outbreak happening around the world. News reports share grim statistics and other daily details about surges in new cases, the climbing death toll, and stories of those who refuse to comply with important social distancing practices. Social media…
Coronavirus news hasn’t gotten any less scary since I wrote about it two weeks ago. At the time of writing this column, the virus is in all 50 states and four U.S. territories. More than 100 U.S. citizens have died from the illness. I wasn’t planning to write about…
Like my readers on Pulmonary Fibrosis News, I’m doing my best to stay abreast of the global COVID-19 outbreak. With that said, I am finding it pertinent for my mental health to take breaks from social media and news reports which are inundating us with information surrounding this…
This weekend, we will celebrate my mom’s re-birthday. It is hard to believe that an entire year has passed since my mom, Holly, had a double-lung transplant. The important moments of that day remain vivid in my memory. The phone rang at about 8 a.m. My…
This week, March 8-14, is National Pulmonary Rehab Week. As a pulmonary fibrosis and single-lung transplant patient, I vow to promote pulmonary rehab awareness on behalf of my fellow Pulmonary Fibrosis News Forum members and others who are suffering from a debilitating lung disease. I am currently participating in…
I am writing this from seat 17A on a flight home from California. I see nothing but fluffy white clouds and sunshine from up here, and I can’t help but wipe a tear from my eye. I have completed another incredible trip despite living with idiopathic pulmonary fibrosis (IPF). When…
Since being diagnosed with idiopathic pulmonary fibrosis (IPF) nearly four years ago, I’ve learned a lot about chronic illness communities. Additionally, I’ve learned about the many professional roles that affect patients, families, and caregivers living with chronic illnesses. All of these roles are important in helping those of us…
The novel coronavirus that causes COVID-19 is slowly working its way around the world. Along with the spread of this new strain of coronavirus, fear and misinformation have been making the rounds. Since the COVID-19 virus has made its way to the States, the uncertainty and unknowns about the…
Recently, a topic in the Pulmonary Fibrosis News Forums called “fits of cough” caught my attention. Reflecting on the topic brought back vivid memories of my own experience with coughing attacks. Before my single-lung transplant, coughing spells sometimes lingered for up to 45 minutes. It always felt like…
