The story of Jennifer
My daughter is 6, and was diagnosed with bronchiolitis obliterans in December 2017. She has had pneumonia since January 2017, and cannot beat the infection cause of her diffuse lung disease and atelectisis. Her BO was caused by the adenovirus and pneumonia. Her sticky mucous traps the bacteria. So far, the leading treatment for BO is steroids and azithromycin. She takes prednisolone and azithromycin every other day. Ever since she started this regimen, she has stabilized. She is by far from well, but she hasn’t had any unusual exacerbations since. She also wears a CPT vest and takes albuterol with 7% normal saline in a nebulizer. It is great! Her total lung capacity went from the low 40s to 70 now! I am so elated! Lexi loves to sing and dance, play video games and watch YouTube videos, play with friends at school, and play Barbies. She is just like any other average 6 year old kid; however, she has a secret lung disease that nobody really knows much about.
She was diagnosed by biopsy after a whole year of struggling to find out what was wrong with her. Her lung biopsy was taken in Louisville at Norton Children’s Hospital, and was confirmed again by a second opinion from another pulmonologist at an outlying hospital who specializes in this disease. I would like to talk to other people who either have this disease too, or cares for someone with this disease. This disease is so rare, I can’t even find statistics on it.