Airway Rejection (BR-1) and B. Cepacia Genomovar I

 Airway Rejection (BR-1) and B. Cepacia Genomovar I

 

    There were two times where my bronchoscopy would come back showing airway inflammation, or BR-1, and I needed to be hospitalized to receive IV steroids and a medicine called thymoglobulin. This medicine lowers your immune system even further so you have to be very careful of not catching any germs. I could not complete the full course of Thymoglobulin the second time because I got pancreatitis. The last time I had BR1 I was placed on azithromycin. I stayed on this medicine for several years before I was eventually taken off by my current doctor, years later. I did not want to stay on this medicine long term as it carries a black box warning. I have had no recurrences of airway rejection since.

    On another occasion, I had been feeling some mucus in my lungs and was scheduled for a bronchoscopy. A few days later, I was at the grocery store buying a few items. My doctor called me while I was checking out. He told me I cultured B. cepacia. What I had known about B. cepacia up until this point, was that it was a very bad “superbug” that didn’t seem to respond to antibiotics. My old CF center in NY had separate clinic days for people with B. cepacia as there was a big risk of cross contamination among patients. So, when my doctor told me this news, I started crying and asked if I would live. He told me not to worry, that there were different genomovars, and the one I had was B. cepacia genomovar I. This wasn't such a bad type to have. I did not have the dreaded genomovar III. I was put on IV antibiotics for two weeks and the infection cleared up. Most likely, I had gotten it from using water, from a water bottle, in my sinus rinses. From then on, I used only distilled water in my sinus rinses.