My Story with Bronchiectasis

Posted on June 25, 2024   |   
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This blog post was authored by Donna, a person living with bronchiectasis, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

In honor of World Bronchiectasis Day, this blog post was submitted by a community member willing to share her journey with bronchiectasis. World Bronchiectasis Day is celebrated each year on July 1st. It aims to raise global awareness, share knowledge, and discuss ways to reduce the burden of bronchiectasis for patients and their families worldwide. Bronchiectasis and NTM 360 thanks Donna for contributing this blog post and sharing her story.

My friend was concerned because her sister in Finland was diagnosed with a horrible lung disease. She had to look up the long name of that fearsome thing… bronchiectasis. I had never heard of anyone else who even knew that word. It got me thinking there might be a support group somewhere and that led me here.

As an infant, I reportedly had a serious respiratory infection and escaped death due to my grandmother's use of poultices. I coughed my whole life according to my other grandmother. In hindsight, I have probably always had asthma and allergies. As a teen through my twenties, I was quite healthy. There were occasional situations when my lungs hurt too much to continue a bike ride, or I couldn’t stop coughing in a dusty place. I never thought too much about it.

I really had no clue about my health, always assumed I was normal because I never smoked. At around age 35, I was finally told I had asthma and given an inhaler. By that time, I was taking allergy shots and, in general, kind of felt miserable. For years, doctors didn’t understand the severity of my discomfort. Finally, after refusing to leave my doctor’s office without some help, the doctor reluctantly ordered a CT scan. I was diagnosed with a severe sinus infection then sent to a surgeon and needed surgery. That sinus surgery happily improved my life considerably.

I believe that the drainage from my infected sinuses caused my lung disease. My coughing increased which created more misery! Over the years, I found several foods that caused problems and now I avoid wheat and dairy completely. I have tried most of the “cures” out there at one time or another. Throughout this process, I learned I have aspergillosis meaning I am highly allergic to aspergillus, a mold in decaying materials. When the aspergillus was discovered in my lungs, I had to take an unpleasant anti-fungal nebulizer medication for a while.

Around age 50, my primary doctor sent me to a pulmonologist who diagnosed me with bronchiectasis. In 2014, a respiratory therapist friend recommended pulmonary rehab for my cough. My doctor was surprised when I asked, but agreed to prescribe it and therefore it was covered by insurance. Those professionals at pulmonary rehab helped me immensely, they gave me a way to cope by being proactive, giving me positive things to do that reduced my discomfort and fear.

Now 20 years since diagnosis, I’m as good as I could hope for. I can breathe freely and exercise moderately after rounds of antibiotics and steroids. Two-thirds of one lung is still undamaged. I take one medication and use an Acapella device twice a day. The pandemic made mask-wearing more socially acceptable, which is a plus for me. I have been wearing masks for many years during outdoor pollen and mold seasons making it possible to exercise, garden, or play.

I’m thankful for increased knowledge about my condition and for a plan to be as healthy as possible in this circumstance.