Updated: Jul 19
Debbie's story begins with years of asthma and bronchial infections that never quite cleared up. This left Debbie to experience chronic wheezing, coughing and overall feeling breathless.
In January of 2015, her symptoms continued to progress and her feeling of lethargy got much worse. Debbie found everyday activities became increasingly difficult to do. Her ability to breathe felt like she was breathing through a straw. Climbing one flight of stairs became exhausting. Debbie’s coughing episodes would leave her feeling as though she was going to pass out.
After repeated rounds of antibiotics and months of being on steroids, Debbie awoke one morning not able to catch her breath and coughing uncontrollably. Debbie was taken to the emergency room where she was evaluated and given a breathing treatment. She was then sent for CT scan, which came back normal. Her pulmonologist then suggested a Dynamic Airway Scan. By that afternoon, Debbie had her diagnosis of Tracheobronchomalacia. Debbie was very fortunate her doctors ordered the second scan, and knew how to diagnosis TBM.
The diagnosis gave Debbie limited relief and answers. Her new daily routine became filled with reminders to take medications and breathing treatments. Frustrated, Debbie began doing research and found information from Beth Israel Deaconess Medical Center (BIDMC) and Jennifer's story. Debbie contacted Jennifer through Facebook and was guided to Boston to be seen by the "Dream Team" at BIDMC.
After waiting months to be seen, Debbie spent a week in Boston being evaluated. Her results were much worse than previously diagnosed. She had gone from a collapse of 75% to 98% in the trachea and from 60% to 95% in the left bronchi and 70% to 90% in the right bronchi. This could have been because of the more sophisticated equipment they had, the doctors performing the tests, or, she had deteriorated that much in six months. Since TBM is progressive, Debbie will never know.
Fortunately for Debbie, most days she's been able to maintain a fairly normal lifestyle without having stents and surgery. Her "new normal" daily routine includes using an Acapella Flutter Valve numerous times per day to clear secretions and a CPAP machine to keep her airway open. Debbie has become more conscious of her overall health to prevent respiratory infections. She prays for a CURE for TBMC and, in the meantime works hard to keep her symptoms under control the best she can.