Just Breathe: Athlete Faces Rare Bronchiolitis Obliterans

Elexa was a nationally recognized and ranked athlete before her diagnosis.

She began having trouble with breathing around age 12, but never let that stop her from doing the absolute best she possibly could on and off the field. For years doctors thought she was faking her symptoms and she was severely mistreated by the medical community. Around the age of 18 was the first time her illness was taken seriously. There were many many diagnoses thrown around, but none seemed to cover every symptom or fit just right.

For the next three years she was in the hospital for numerous lung infections, over 10 incidents of a collapsed lung, surgeries, and tests, sometimes spending three months inpatient at a time. A lung biopsy was finally taken and a diagnosis of interstitial lung disease was given, but it turned out to be the wrong interstitial lung disease. The experts who were consulted for the biopsy never got it and miscommunication caused further delay in finding a correct diagnosis.

After traveling over 1000 miles from Norfolk, VA to Cincinnati Children’s Hospital to see a specialist, bronchiolitis obliterans was finally mentioned. A second wedge biopsy of the lung was necessary for definitive diagnosis, but that was too dangerous unless another surgery was already taking place. It took another few months before the opportunity for biopsy arose and a few months after that the final diagnosis was confirmed. Bronchiolitis obliterans was the disease that had been scarring Elexa’s lungs for years, and the time it took to diagnose severely cut down on the treatment options. At the time of diagnosis her lung function had reached a low of 28%. Many treatments were attempted, but the only one that has helped has been a type of chemotherapy called cytoxan. Cytoxan was a last attempt at finding a treatment and remains the only medication that has made a significant impact other than long-term steroids.

Right now, Elexa continues her treatments, has inpatient stays every couple months, treats the other diseases that have come up as a result of side effects (diabetes, osteoporosis, ptsd), and tries to remain positive. She misses playing sports and wishes her body were strong enough to do everything she used to, but works hard at staying as healthy as possible. She likes to help people learn about advocating for themselves in a medical setting and raising awareness for children’s interstitial lung diseases and rare diseases.

Filed Under: Insights, Patient Stories

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