Courage to Care – Christie Patient

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- and post-transplant challenges, caregiver struggles, grief, celebration, and…

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 want to diminish or ignore those fears, but…

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…

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…

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…

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…

Feb. 29 is Rare Disease Day. Pulmonary fibrosis is one of the more than 6,000 known rare diseases. While PF may not have much in common with other diseases, those with PF share a connection with the one in 20 people worldwide who will live with a rare disease…

Much of my young adult life was molded by my fears. I have talked about the effects in past columns, and how my mom’s hospitalization helped me find my courage. After surviving months in the ICU, a double-lung transplant, and a rocky start to her recovery, my mom is…

When my mom, Holly, had an acute exacerbation of her idiopathic pulmonary fibrosis, she was transported to the University of California, San Francisco (UCSF) Medical Center. She spent the first three weeks in the intensive care unit recovering enough to get on the lung transplant list. When at last…

As an English major with an interest in psychology, I am constantly analyzing the effect that words can have on people. Words are magical units of meaning that we can combine in infinite ways to convey ideas and thoughts. Some combinations can be healing, while others can have the…

Last week, we celebrated the one-year anniversary of my mom, Holly, getting on the lung transplant list. If you’ve been a reader of mine for a while, you know that getting on the list was not a smooth process for us. She was pretty…

I was recently brainstorming ideas with other rare disease columnists about how to support someone admitted for a long hospital stay. I started thinking about the ways that caregivers need support, too. It’s easier to be the person who can walk out of the hospital, but caregivers still deal…