How Bronchiectasis Led to My CF Diagnosis

Discovering I had bronchiectasis led to my cystic fibrosis diagnosis at 67 years old. But the delay in diagnosing my bronchiectasis highlighted a lack of awareness about this disease. 

June 27, 2024 | 5 min read
A headshot of Julie Carel
Julie Carel
Julie Carel smiling on the beach in front of the ocean

Before I was diagnosed with cystic fibrosis and while recovering from surgery for placement of a colostomy bag, I became very ill with influenza (or maybe it was COVID-19; we'll never know for sure). It was March 2020, shortly before the shutdown. The respiratory infection with a severe, productive cough would not respond to antibiotics. Persistent. Exhausting. 

Unrelated to the infection, I had an abdominal CT scan for my colostomy, and they saw something suspicious in my lung. The surgeon insisted on testing. After a chest CT, a local pulmonologist told me that he suspected mycobacterium and that I wouldn't live through a surgery to close my colostomy. Helpful, right? I tried to get an appointment with the pulmonologist in a different city where medical care meets a higher standard. No openings were available because all of the pulmonologists were working to save COVID-19 patients. Our world had been turned upside down. 

But then as luck would have it (or was it misfortune?), I decided to ride my bicycle to help manage stress. The fatigue didn't matter. I couldn't breathe but I needed air. About a mile out on the Katy Trail, I had my first-ever episode of hemoptysis. It was a struggle to make it back to the car where there was a roll of paper towel. I then rushed to the ER where, because of COVID-19, my husband was not allowed through the hospital doors. I was alone for the very first time. Terrified. My husband, in shock, wept in the parking lot and called our pastor for support. He arrived and waited in the parking lot, too. There was so much blood we were convinced I was dying. 

That was my ticket in to see the pulmonologist in the city. Within a week I had a Zoom appointment. He was a kind man who listened carefully. He told me that I most likely had bronchiectasis. He explained that there was permanent damage to the bronchial tubes from repeated respiratory infections. What? He couldn't have been talking about me, could he? I hadn't had a life of repeated respiratory infections. Plus, I had never heard of bronchiectasis and even had to learn how to pronounce it correctly. He confirmed the diagnosis after a difficult bronchoscopy procedure. At this time, I was also diagnosed with mycobacterium. 2020 was not my best year to say the least. 

I started a different antibiotic, started airway clearance by nebulizing saline, and learned how to “huff cough.” They gave me a flutter device. Eventually, they ordered an oscillating vest. He told me to exercise because exercise is airway clearance too. It was all so new and overwhelming while simultaneously trying to manage a colostomy bag.  

Unfortunately, the infection in my airways morphed into MRSA. Repeated rounds of antibiotics every eight weeks over the next two and a half years wouldn't conquer it. Nebbing, vest treatments twice a day, and daily exercise helped me breathe better, but it still wouldn't clear. I coughed up so much green phlegm during that time that it was impossible for me to go out in public. The fatigue was debilitating. The pandemic gave me permission to stay home, but it was a very long two-and-a-half years before finally being diagnosed with cystic fibrosis, which was the culprit. 

How long have I had bronchiectasis? I'll never know. It's my understanding that oftentimes there is a long delay in diagnosis, perhaps even as long as 10 years from the start of symptoms. If that's the case, then it appears there is a general lack of awareness in the medical community.

Bronchiectasis is an underdiagnosed and misdiagnosed disease. It is a neglected disease. This is unacceptable.
 

If patients present with a persistent cough, fatigue, breathlessness, chest pain, coughing up blood and/or weight loss, bronchiectasis should be considered. Finding the cause of bronchiectasis could save lives.

July 1 is World Bronchiectasis Day — make a pledge to tell at least one person about this disease to increase awareness. Let's advocate for early testing and diagnosis. This is the time to speak out and advocate for those who have yet to be diagnosed.  

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
CF Related Health Conditions | Infections
A headshot of Julie Carel

Julie is a retired mental health professional with more than 30 years of service in public mental health. During her career, she advocated for persons with developmental disabilities and designed the first statewide family support program. She later helped develop peer support programs for adults with mental illness. Julie is an active advocate for women's rights. She and her husband, Doug, enjoy traveling in and outside the United States. They love hiking and cycling on the Katy Trail and prefer the outdoors. They live in rural Missouri with their little dog, Bob.

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