On Mother’s Day in 2019, I walked into the ICU on the ninth floor of University of California, San Francisco’s Parnassus campus for the last time. It had been a month since my mom, Holly, was discharged from the hospital there after having a bilateral lung transplant. Although I…
Columns
As a patient living with a chronic illness, I’ve become comfortable with people using clichés to try to comfort me. People naturally want to relate to others, but it’s often hard for someone who’s healthy to understand the experiences of a young adult who requires oxygen to breathe. One cliché…
When I was diagnosed with idiopathic pulmonary fibrosis with dendriform ossification in 2014, it was the second time I had a medical condition with an unknown cause. Three years earlier, I developed blood clots and had two pulmonary embolisms. Again, a reason for them couldn’t be determined. These unknown…
I am finally on the road to a better understanding of my disease, lymphocytic interstitial pneumonia (LIP), and the course it’s taken throughout my life. In my previous column, I mentioned that I would soon have my second visit with my new pulmonologist. During this visit, I finally got…
Like with all chronic illnesses, patients living with idiopathic pulmonary fibrosis (IPF) have a lot to contend with. Although IPF is a progressive and life-threatening lung disease, the physical challenges it presents, such as shortness of breath, fatigue, and cough, are often not the most difficult aspect. At least,…
When I volunteered to coordinate the Pulmonary Fibrosis News initiative “30 Days of PF” alongside fellow columnist Charlene Marshall, I didn’t expect a tremendously emotional experience. I asked my wife, Dana, to write her pulmonary fibrosis (PF) story for this program. She had difficulty covering seven years in 400 words,…
When doctors discuss the costs and benefits of getting a lung transplant, they often talk about the lifelong use of immunosuppressants. These medications can have a wide range of side effects. For example, most people experience at least a few of the many side effects of prednisone, a…
As we head into the last week of August, summer has been flying by, kids are heading back to school, and fall will soon be upon us. I love the cooler weather that fall brings, as I’ve found it’s been harder to breathe in the heat and humidity of…
As I write this, my parents, Diana and Jack, are likely hearing muffled morning sounds from the guest room down the hall. Hard whispers from 4-year-old Jack, tired groans from 2-year-old Maeve, and gurgles or squeaks cutting through the golden light from Gavin the newborn. I know my parents are…
I am an advocate for my rare disease, but I still can’t describe it. Several weeks ago, I went to the dentist with my husband. It was a hot and humid day, as it always is here in Texas. I was carrying “Cooper,” the name I gave to my…
