Courage to Care — Christie Patient

When I recall the times that loved ones were in the hospital for extended periods, I can still feel the energy of the waiting rooms. ICU waiting rooms have a particular hum about them, a palpable tension created by people…

Last week was Global Tracheostomy Tube Awareness Week. The mother of a child with complex health challenges started it. Her goals were to educate people and normalize her daughter’s trach. While Trach Week focuses on the use of a trach as a…

Dear Christie,   It’s 10 p.m., Dec. 26th, 2018. You just got this crazy phone call from Mom. She told you that her disease — which you still don’t know the name of — has…

Last weekend, my column turned 1! There were only a few weeks in the past year that I did not write a post for Pulmonary Fibrosis News. This means that I have had about 50 opportunities to share my family’s…

This past week, I felt things. Like, I really, finally felt things. They were real feelings, not forced, and came without judgment. It’s been longer than I want to admit since I have experienced any emotion without it being tainted by…

Now more than ever, healthcare workers and hospital employees are being applauded for their work. Even in the best of times, working in healthcare is not easy. These days, our healthcare systems are stressed because of COVID-19, and medical care…

After writing last week about the loss of my friend, I realized that it was her birthday. That very day, she would have turned 30. I don’t believe in coincidences. I think things happen at certain times for…

April is Donate Life Month. I have struggled to think of something new to say about organ donation. Everything I’ve written for Pulmonary Fibrosis News has been inspired by, or is in response to, organ donation. I’ve talked about both pre-…

Living through a pandemic means that people around the world are having new and uncomfortable experiences. Many, including me, are afraid. We fear for our health and for our loved ones. We fear for our economy, finances, businesses, and futures. I don’t…

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.

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…

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.