Pulmonary Fibrosis News Columns

March 4, 2021March 4, 2021

Reflecting on the Commonalities That Exist Among Rare Disease Patients

Pulmonary Fibrosis News Columns

Last Saturday, BioNews, the parent company of this website, celebrated Rare Disease Day with a virtual event. We planned the event for about 300 participants from the rare disease community ... Read more

February 26, 2021February 26, 2021

The Courage Crew Is Running for Rare Disease Day

COVID-19 Columns, Pulmonary Fibrosis News Columns

I have a problem with inertia. The forces that get my engine firing seem to start late, work slowly, and then combust and burn all at once. It’s a long ... Read more

February 25, 2021February 25, 2021

Rare Disease Day Brings Me Hope as a PF Patient

Pulmonary Fibrosis News Columns

We talk a lot about the importance of finding and maintaining hope in the rare disease community. While I agree this is important, I also want to acknowledge it isn’t ... Read more

February 24, 2021February 24, 2021

I Miss Giving My Mom the Gift of a Good Hug

Pulmonary Fibrosis News Columns

I don’t know if humans will recover from this pandemic: the lack of touch, the resocializing to keep our distance, the physical isolation. I have dreams where I’m in groups ... Read more

February 18, 2021February 18, 2021

6 Ways to Help Others Manage Pandemic Stress

COVID-19 Columns, Pulmonary Fibrosis News Columns

Since the start of the pandemic, levels of stress, frustration, and confusion have risen to troubling levels. It seems that many of us also are experiencing more concern over new, ... Read more

February 12, 2021February 12, 2021

I’m Trading ‘Coping’ for ‘Hoping’ Thanks to the COVID-19 Vaccine

COVID-19 Columns, Pulmonary Fibrosis News Columns

Last month we moved into our new home in Hawaii. My husband, Jonny, flew back to the mainland immediately for several months of Army training, so I was left to ... Read more

February 11, 2021February 11, 2021

My Healthcare Wish List: How to Improve the Patient Experience

Pulmonary Fibrosis News Columns

At a recent hospital appointment, I was asked to complete a survey about my experience. As a patient with a chronic illness, I am at the hospital a lot and ... Read more

February 10, 2021February 10, 2021

I Now Understand the Importance of Really Washing Your Hands

COVID-19 Columns, Pulmonary Fibrosis News Columns

“Did you wash your hands?” That’s a question I was very familiar with long before the COVID-19 pandemic. My mom, Diana, is an obsessive hand-washer. She is also obsessive about ... Read more

February 5, 2021February 5, 2021

A PF Patient’s Experience: Setting Goals for Better Health

Pulmonary Fibrosis News Columns

I thrive in an organized and structured environment. As a young adult, I guess I’m a creature of habit and predictability, but my parents say I’ve always been this way. ... Read more

January 29, 2021January 29, 2021

How to Prepare for a Loved One’s Care as They Await Transplant

COVID-19 Columns, Pulmonary Fibrosis News Columns

My journey to becoming a caregiver for my mom, Holly, was a quick one. I learned about her prognosis and treatment options while she was en route to the ICU ... Read more

January 28, 2021January 28, 2021

In Memory of Donnie Vapor: We’ll Never Forget You

Pulmonary Fibrosis News Columns

It happens far too often in the pulmonary fibrosis (PF) community: the unexpected and sudden loss of a fellow patient. I’ve lost some dear friends since my idiopathic pulmonary fibrosis ... Read more

January 27, 2021January 27, 2021

Finding the Perfect Rental Home for Our Transplant Patient

COVID-19 Columns, Pulmonary Fibrosis News Columns

Care-cation: an extended stay in a place away from home to care for a loved one in need. In the middle of the coronavirus pandemic, we had a week or ... Read more

January 21, 2021January 21, 2021

Toward a Better Understanding of the IPF Cough

Pulmonary Fibrosis News Columns

While I don’t have a medical background or degree, I have learned a lot in the past few years about idiopathic pulmonary fibrosis (IPF). Much of that learning comes from ... Read more

January 15, 2021January 15, 2021

New Year, Same Old COVID-19 Fears

COVID-19 Columns, Pulmonary Fibrosis News Columns

For me, the scariest part of the pandemic has been imagining one of my loved ones developing a severe case of COVID-19. Relatable statement, I know. But I don’t have ... Read more

January 14, 2021January 14, 2021

PTSD Is Common in Chronically Ill Patients. Here’s How I Address It

Pulmonary Fibrosis News Columns

As a columnist for BioNews, I try to write about a variety of topics pertaining to patients living with idiopathic pulmonary fibrosis (IPF), even those that are taboo or difficult ... Read more