Cystic Fibrosis News Today Columns

October 15, 2021October 15, 2021

Don’t Overlook Emotional Wellness When Dealing With Chronic Illness

Cystic Fibrosis News Today Columns

Paying attention to emotional wellness doesn’t come easy for some of us. It is often easy to sweep our emotions under the rug and function on autopilot until we burn ... Read more

October 14, 2021October 14, 2021

‘Look at Me, I’m Atrophy’: Being Chronically Ill at Halloween

Cystic Fibrosis News Today Columns

I have always loved Halloween, but celebrating it with a chronic illness like cystic fibrosis has always meant having to be creative. Being chronically ill meant having to spend a ... Read more

October 11, 2021October 11, 2021

3 Terms That Have Helped Me Understand the Well Sibling Experience

Cystic Fibrosis News Today Columns

Studies about healthy people with chronically ill siblings are rare. Almost every study examining the psychological impact of illness on the well siblings begins, “This is an underexplored demographic.” This ... Read more

October 8, 2021October 8, 2021

Returning to the Clinic Means Lung Test Anxiety Again

COVID-19 Columns, Cystic Fibrosis News Today Columns

Through the sliding glass doors and down the stairs of the medical plaza, the midday news played — muted, but with captions running — on the TV mounted across from ... Read more

October 7, 2021October 7, 2021

‘The Nicest Kids in Town’: My Complex Relationship With Medical Residents

Cystic Fibrosis News Today Columns

This week’s thoughts are inspired by one of my childhood best friends. She lived down the street from me for most of my life. We’d drive to school together. We’d ... Read more

October 6, 2021October 6, 2021

What It’s Like to Have a Family Member in the ICU

Cystic Fibrosis News Today Columns

In 2016, my family spent weeks in the ICU with my brother, Bradley, who had cystic fibrosis and was dying from sepsis caused by an infection. I can’t fully describe ... Read more

October 5, 2021October 5, 2021

Here Is Why Saying I Have a Dancer’s Body Is Not a Compliment

COVID-19 Columns, Cystic Fibrosis News Today Columns

Someone told me I had a “dancer’s body” the other day, and I pretended it was flattering. “Thank you,” I said, since I hate refuting compliments (and believe intent matters ... Read more

September 30, 2021September 30, 2021

I Want to Do More Than Survive in Life After Transplant

Cystic Fibrosis News Today Columns

Are you living or surviving? Most cystic fibrosis patients have dabbled with this question. To what extent does your health guide your life, rather than love or ambition? I knew ... Read more

September 28, 2021September 28, 2021

How My Pain Could Make You a Better Person

Cystic Fibrosis News Today Columns

I’m starting to doubt the reasons why I doubt myself. Let’s start this column in a weird place: constipation. If one of my best friends is constipated (I bet you ... Read more

September 24, 2021September 24, 2021

How Others Showed Me Love on My Darkest Days

Cystic Fibrosis News Today Columns

I’ve witnessed the greatest acts of love at my sickest. Whenever I reflect on how love has shone through on my darkest days, my misty eyes reveal how much someone ... Read more

September 23, 2021September 23, 2021

‘Changing My Major (Organs)’: A Chronicle of Bilateral Lung Transplant

Cystic Fibrosis News Today Columns

I was evaluated for my bilateral lung transplant in March 2019. I was transplanted on June 14, 2019, and graduated from physical therapy two months after that. Although transplant facts ... Read more

September 21, 2021September 21, 2021

If You Need a Miracle Today, Read This

COVID-19 Columns, Cystic Fibrosis News Today Columns

“What should I write my column about?” This is what I asked my Tiny Dancer the other day, while mass-prepping as many columns as possible before having surgery on my ... Read more

September 20, 2021September 20, 2021

How COVID-19 Has Changed the Rules for Hospital Visits

COVID-19 Columns, Cystic Fibrosis News Today Columns

My sister Mary was just in the hospital for the first time in nine months. Though she was an inpatient over the holidays last winter, as so many cystic fibrosis patients ... Read more

September 17, 2021September 17, 2021

Trusting a Future Where I Do More Than Just Survive

Cystic Fibrosis News Today Columns

When the U.S. Food and Drug Administration announced two years ago it had approved Trikafta (elexacaftor/tezacaftor/ivacaftor) for some cystic fibrosis (CF) patients 12 and older, I carried what I considered ... Read more

September 16, 2021September 16, 2021

‘Disappear’: On Being Absent From Your Own Life

Cystic Fibrosis News Today Columns

In honor of the mixed reviews of the screen debut of the Broadway musical “Dear Evan Hansen,” I wanted to write about something every chronically ill teenager has taken part ... Read more