Nancy’s story began in January 2010, when she came down with what appeared to be a cold and a “deep cough”. She was prescribed various medications, but the symptoms did not respond. As a result, Nancy was hospitalized for ten days.
During her hospitalization, Nancy was diagnosed with asthmatic bronchitis. After ten days, Nancy was discharged home, though she did not feel her symptoms improved. Over the next few months, Nancy developed reoccurring respiratory infections out of no where, some of which would send her to the hospital for treatment. Each time, Nancy would be prescribed steroids, breathing treatments and oral medications, with limited relief.
Misdiagnosed
Nancy’s primary care physician referred her to specialists to try and pinpoint the cause of her reoccurring breathing difficulties. Nancy was diagnosed at points of her journey, with asthma, croup, COPD, respiratory viruses, etc. It was nearly a year after Nancy’s initial illness that her pulmonologist ordered a bronchoscopy due to her “seal like bark”. During this test, it was discovered that Nancy was filled with secretions and her trachea was collapsing.
Help around the corner
Fortunately for Nancy, her doctor recommended Dr. Sidhu Gangadharan at Beth Israel Deaconess Medical Center (BIDMC). After her initial work up by Dr. Gangadharan and Dr. Adnan Majid, Nancy was fitted for stent to see if she would be a candidate for Tracheobronchoplasty surgery. A few days after her stent procedure, Nancy had difficulties breathing and was brought back to BIDMC by ambulance. The results of the stent procedure were inconclusive and the Tracheobronchoplasty surgery was determined not to be an option for Nancy.
Over the next four years, Nancy continued under the care of Dr. Majid, as well as her primary doctor and pulmonologist. Her symptoms were constant, with limited periods of improvement. By 2015, Nancy was nearly bedridden. A repeat bronchoscopy had doctors baffled as to how Nancy was still able to breath with the amount of secretions in her airways. Nancy was sent to a local rehabilitation facility to assist with her constant care needs.
Not giving up
Dr. Gangadharan and Dr. Majid never gave up on Nancy. They proposed Nancy try a different temporary stent trial, which, thankfully helped her symptoms. Nancy proceeded with the Tracheobronchoplasty surgery, March 2016. Nancy was hospitalized for 10 days post op, then a period of a time at a rehabilitation facility and finally, home. Nancy continues pulmonary therapy and frequent check ups. Nancy’s trachea is now open and stabilized, and will hopefully continue to improve. Nancy reports she is able to return to her daily activities such as walking, climbing stairs, shopping and exercising. In June, Nancy celebrated her birthday and she made sure to blow out ALL of her candles, simply because, she could!
Thankful for CureTBM
Nancy is thankful for Jennifer, CureTBM and the support groups created through social media. Throughout this journey, Nancy and her family searched the Internet and tried to find resources about her condition with limited answers. At points in her journey, Nancy felt scared, alone and in a sense hopeless. Thankfully, through her own persistence, Nancy is now breathing a lot easier.