Biography

Several years ago I became septic from Bactrim, a sulfa based antibiotic. I ended up with ARDS (a fancy term for lung failure) and ended up in a coma and on a vent for 3 months. I came away from it with Pulmonary Fibrosis and ILD. We were hoping since it was event based that neither would advance. Unfortunately we were wrong and I am now on 6-7 ltrs of oxygen 24/7 and if I get up to even fix me a drink I have to use an additional supplement on top of my cannula of a non rebreather on a tank up to an extra 10 ltrs. because my sats drop in the 60’s and 70’s. I am going to Duke in a couple of weeks to try to get on the transplant list.
For those of you who are discussing steroids I would caution you to try to minimize your use of them. It is because of all the steroids I have had over the years the I now, at the age of 49, have both knees and both shoulders replaced. The steroids caused a condition called avascular necrosis in my joints. I will tell you that prior to me getting much worse these last 6 months that my pulmonologist would do bronchoscopes every 3 months to clean out the heavy secretions I would build up in my lower lungs. These worked great, made me feel much better and would help prevent pneumonia, which helped keep me off of steroids. Anyway, best wishes to those living with these diseases and the loved ones who support us.