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After Years of Breathing Problems, Specialized Surgery Turns Danielle’s Life Around

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HOW THE RARE DISEASE TRACHEOBRONCHOMALACIA IS COMMONLY MISDIAGNOSED AS ASTHMA

Danielle H. was diagnosed with asthma as a teenager. Over the next 15 years her breathing gradually worsened, and she began to struggle with ordinary tasks. But what she had always thought was asthma turned out to be tracheobronchomalacia (TBM) — a rare problem that causes the walls of the airways to narrow and collapse.

“I work as a hospice nurse,” Danielle says. “My condition was getting worse and it became hard to work. I couldn’t walk up the stairs or tie my own shoes without becoming short of breath. I was hospitalized 6 times from 2015 to 2019. I was given IV steroids, which made me sick to the point that I needed braces to walk. I was even having trouble concentrating because my brain wasn’t getting enough oxygen.”

Danielle’s condition was also affecting her personal life.

“I was told not to have children because of my condition,” Danielle recalls sadly. “I couldn’t enjoy activities with my husband, family or friends. I couldn’t walk my dogs, and I was sleeping with a CPAP machine every night. I basically had no quality of life.”

A proper diagnosis and relief

Fortunately for Danielle, one of the doctors she works with noticed her on-going struggles and suggested she seek out another opinion. That’s when Danielle — who lives in South Jersey — came to Temple and received the diagnosis of TBM, which she found out is often misdiagnosed as asthma.

“I was familiar with Temple University Hospital because I had family members who were treated there,” Danielle says. “That’s how I ended up seeing Dr. Bakhos.”

Danielle was able to quickly get an appointment with Temple thoracic surgeon Charles Bakhos, MD. A bronchoscopy test confirmed that her trachea was collapsing, and her airways were 80 to 85% blocked.

Her condition was severe enough that Dr. Bakhos recommended she have a tracheobronchoplasty — an advanced surgical procedure that involves sewing mesh into the trachea to help open and strengthen the windpipe. Few hospitals in the country are able to perform this complex procedure.

Dr. Bakhos is one of the only surgeons on the East Coast who performs tracheobronchoplasty. I felt so comfortable with him. He explained everything to me and used pictures to show me exactly what he was going to do. He was very confident I was going to do well. I was nervous about the surgery, but Dr. Bakhos and the nurses helped me work through it. — Danielle

Hope for the future

Danielle had her surgery in February 2020. Two weeks later, a follow-up bronchoscopy showed that the surgery worked — her airway was stable and no longer collapsing. Her lung function and stamina have improved tremendously and continue to get better.

Danielle H., walking her dog

I can walk 3 miles, and I don’t need the CPAP machine anymore. My husband and I went surf fishing, and it was the first time I felt the sand on my feet in almost 2 years. Best of all, my doctors told me I am healthy enough to have a baby!

Danielle

“I want to spread awareness about TBM because it’s so commonly misdiagnosed,” Danielle adds. “Receiving a correct diagnosis and having the tracheobronchoplasty has been truly life-changing and life-saving. I have my life and my relationships back thanks to Temple.”

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