I often have family and friends ask what I do in the hospital all day. People often don't realize how busy CFers are when they are in the hospital. Treatments come every 4 hours around the clock and can take 30-40 minutes to administer. Add strange medication schedules, early morning blood draws, staff coming in almost every hour, and we often go home feeling sleep deprived!
6:00am- My nurse brings my acid reducer which I take and promptly try to go back to sleep.
7:30am- breakfast arrives along with my vitamins and meds.
8:00am- treatments. This means if breakfast is late or I decide to asleep in I don't get breakfast until it is ice cold.
11:30am- lunch arrives.
2:00pm- I try to hop on the exercise bike for about 30 minutes if I don't have anything else going on such as pfts, x-rays, etc.
9:00pm- After treatments I try to have a snack, take Orkambi relax in the dark. I don't usually bother sleeping yet because the nurse is back by 10 to change my IVs and give me my night meds.
10:00pm- IV bag change and night meds.
10:30pm- Finally time to sleep!
4:00am- I am supposed to have another set of treatments, but I usually decline these because I want to get at least 5 hours of sleep.