During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Rebecca Mueller, an adult with CF.

They say that life happens when you’re busy making other plans. In my experience of adulthood with CF, it felt more like disease progression happens when you’re busy making other plans. In the years awaiting a mutation-targeted therapy that would work for me, my days had become dominated by airway clearance therapies and the dietary demands of advancing CF. My life was still full with an incredibly supportive family, empathic friends, and fantastic mentors and colleagues, but my time was taxed with the advancing burden of this progressive lung disease.

But then, things changed. A revolutionary new mutation-targeted therapy was approved in the Fall of 2019. I started the therapy right after Thanksgiving 2019, and my life started to unfold at warp speed, even amid the pandemic that slowed so many things down. Within just 36 hours, it was obvious that my lungs were moving air and clearing mucus differently than ever before. My mucus was thin and sometimes clear instead of viscous. My inhalation felt expansive; my chest was weightless. While I didn’t yet dare to hope this drug would transform my long-term disease trajectory, the instant physical changes were elating. In these first few months, I stuck to my usual routine of part-time work, rest, and frequent treatments, but I was seeing noteworthy changes. The walk to work was no longer physically taxing. I no longer coughed during swims and put on weight without working at it.

My PhD ceremony held in May of 2022 at the University of Pennsylvania.

In March 2020, with news of COVID-19, I moved from my urban apartment building to my mother’s suburban condo to quarantine.

As many throughout the world worried about developing respiratory complications for the first time in their lives, I experienced an unprecedented reversal of respiratory symptoms.

I hit personal records on my Peloton and surprised my mom by moving about silently in her condo with no warning blare of the tell-tale CF cough. “Ah, you snuck up on me! I can usually hear your cough from the parking lot,” my mom exclaimed, delighted that my crackling bark had miraculously dissipated.

In July 2020, I went to my first virtual CF retreat and saw people like me across the lifespan doing our treatments together as we sipped coffee each morning. Virtual CF retreats came at an ideal time in my life, showing me all that one could do despite lung disease, transplants, and other CF complications. I watched as people coughed, laughed hard, had fun, and reflected on life’s big moments. I was utterly inspired by how everyone moved forward amid shifting risks, new diagnoses, complications, surgeries, and therapies. I was amazed by my newfound friends who had moved abroad to pursue relationships and found inspiration in my friends who thrived through the ups and downs of lung transplant. 

The retreat was an intense lesson on resilience, belonging, and living a life full of meaning. The CF community helped me make the most of the symptomatic relief that I got from the mutation-targeted therapy in a moment when I was still too afraid of disappointment to learn my lung function numbers on this new medication. Ever since adolescence, I knew that CF never got better; all I could ever hope for was very gradual disease progression. When I started the newest mutation-targeted therapy, all I could hope for was stability. To actually feel better on the medication was more than I had ever expected. I did not want the sheer elation of finally breathing deeply to be degraded by numbers on a lung function test that might not reflect how good I felt. My CF retreat friends had lived through so many cycles of anticipation, progression, and disappointment. They modeled how to find joy in the moment and taught me how to appreciate whatever our bodies let us do in the here and now.

And my body was finally letting me do things. In August 2021, I finally earned my PhD after seven years of graduate school punctuated by two medical leaves to address my advancing lung disease. When I graduated from high school, college, and my master’s program, it was bittersweet because I could never really envision the next life milestone. Endings were not synonymous with the typical excitement of new beginnings. But this time was different. I was pumped and ready for a full-time post-doctoral fellowship, a position I knew would enable me to figure out what was possible with my newfound health. To my delight, so much was possible now that I could travel for academic conferences and balance teaching with research without CF holding me back.. 

Amidst these professional transitions, I met the man who would become my husband. I joke that the pandemic created an ideal filter for daters with CF, as it made scientific beliefs and risk aversion normal fodder for dating apps. After our first date, a hike in the Wissahickon, Shekar and I decided it was okay to share air and spent the rest of the pandemic cooking, baking, watching movies, and taking long walks at local college campuses.

Shekar and I after our wedding reception in January 2023.

In the fall of 2022, we met each other’s extended families, and just a few months later, we got engaged. In January 2023, our families came together at a local courthouse to witness our wedding, followed by casual but very special family celebrations. Before starting this new therapy, I had been in relationships, but as my disease advanced, I felt like I only had the energy to be a part-time girlfriend. Having so much more energy on the medication opened up more space for a committed relationship. It also made disclosing CF so much easier because the miraculous impact on my day-to-day health made the future feel more hopeful.

A year later, Shekar and I continue to reach milestones I never imagined in my wildest dreams. We bought a new house, got new jobs, and experienced family celebrations. I have also experienced some new medical complications, but none have stolen my physical energy the way CF did before I started taking the new mutation-targeted therapy.

Because of this new therapy, I can stay up late, travel, skip a treatment to celebrate, and be busy without detrimental consequences to my health.

I have finally experienced the adage that life is what happens when you’re busy making other plans.

Author

Becca Mueller, 42, was diagnosed with CF at two and half years of age. Becca thrives on ideas and collaboration and spends her days teaching students and doing research. She enjoys taking hikes, cooking, spending time with her tightknit family, and giving her nephews too much candy. A Philadelphia native, she now lives in Abington, PA, with her husband and hopefully, a poodle, some day.