“When I'm on IV meds lately, I'll work part time from home, since it’s an added chore in my life that can take a lot of time. I used to go to work and would ‘hook up’ to the meds in a bathroom stall with lots of alcohol being used to make sure everything is clean. The doctors will usually prescribe one drug for just once a day to cut down on my morning obligations.
Sometimes, for the late day doses, I'll set my phone alarm to go off because I would often fall asleep. It can get complicated when on 3 or more meds, and unfortunately I'm usually doing this all solo.”
“I think this is the hardest part of CF care. I manage the intense IV schedule with a routine/medication checklist, and my whole family and I keep an eye on this schedule to get it all done. Sadly, nearly every minute of my day ends up planned and scheduled while on IVs. To pass the time, my family and I watch movies, play cards or dice games, and find reasons to laugh … and laugh hard!”