In addition to my sickle cell disease (SCD), I have restrictive lung disease. I developed this condition because of repeat acute chest syndrome, which is a common complication of SCD. Prior to getting diagnosed, I was always short of breath and struggled to fill my lungs completely. I wear my oxygen 24/7 and am only really able to be off oxygen for about 20 minutes before I start losing my breath.
When I’m at home I have a base floor model oxygen tank. When I leave I carry portable oxygen. I always have the power cord and cigarette lighter cord so I can keep it charged throughout the day. When we traveled to Springfield for Rare Disease Day, I did not have my cigarette lighter cord but figured since I had the wall charger, I would be okay.
During the lunch break, my oxygen battery died. My dad and I found a floor outlet and plugged the machine in. Nothing happened. My dad took me to a different floor and tried four other plugs. Nothing happened. The actual power cord was broken, and my oxygen machine wouldn't charge.