Managing a chronic illness is not for the faint of heart. Learning to live with idiopathic pulmonary fibrosis (IPF) is the hardest thing I’ve ever done. I applaud my colleagues at Bionews Services and the friends I’ve made around the world who share their stores and advocate for others.
It’s been seven months since my mom, Holly, had a double-lung transplant. She and the miracle organs that have been stitched within her are going strong. But their relationship hasn’t been perfect. My mom’s body and her new lungs each brought their own baggage to the relationship.
After my single-lung transplant in December 2015, I was invited to participate in a panel of idiopathic pulmonary fibrosis (IPF) and lung transplant patients who had previously taken the anti-fibrotic medications Ofev (nintedanib) or Esbriet (pirfenidone). My pulmonologist had asked me to take part in a…
For the third day in a row, I’ve been feeling angry with my body, particularly my lungs. I’ve been experiencing severe breathlessness. While I don’t have signs of a viral or bacterial infection, I’m struggling to hold a conversation because of my need to pause frequently. This level of…
I have spent a lot of time writing about self-care and mental health as a caregiver. Even if the term “self-care” sounds silly to you, I recommend dedicating time every day to your mental health. If for no other reason than to help prevent caregiver burnout.
If you’re aware of “FOMO,” you’ll know that it stands for “fear of missing out.” It can be used to describe the feeling that many people have of wanting to experience everything that life has to offer. Sometimes FOMO can lead to people compromising their physical health by depriving…
One of the reasons I enjoy traveling is its provided gift of reflection. While experiencing other cultures and countries, I ponder how I live my daily life. Since getting my idiopathic pulmonary fibrosis (IPF) diagnosis, my need for control and organization has increased. It is a way that I…
My husband, Jonny, and I return to the University of Nevada, Reno, every year for our alumni rugby game. The first weekend of October is among the best of the year. Our parents come to watch, and for one magical day we have our closest friends and family in one…
Our bodies are amazing machines, but we can be hard on them sometimes. My adventurous spirit has led to some accidents and injuries, but my body always prevails. When I push myself too far, my body forces me to rest, reminding…
In times of trouble, I remember the words of Mister Rogers’ mother, who said to always “look for the helpers.” Until recently, that advice comforted me more in theory than in practice. It was easy to look for — and see — my helpers, but I seldom called…
Get regular updates to your inbox.
