So this is kind of a long story, but in Adult CF World, patients are not allowed to leave the hospital. In Peds (The Pediatric CF World), we often got passes to leave the hospital for any reason you could think of. Once I spent almost 6 weeks in the hospital (this was in the era before Wi-Fi, so all I had was LiveJournal to occupy my time... it was painful). But in those 6 weeks in the hospital, these were some of the reasons I left the hospital on pass:
*To go to class (4 days a week for one hour a day)
*To go dancing (yeah, Peds was Awesome)
*To go to dinner/brunch/lunch/etc.
*To get my haircut
*To take a nap in my own bed
*To go to the movie store.
*To walk out to picnic point.
*To breathe fresh air.
(On Pass is LEGAL, meaning the hospital knows. There have been times when a parent or a friend has taken me out of the hospital between meds without permission from the hospital).
In Adult land, they rarely, if ever, issue a pass for a patient to go to anything. So I just refuse to leave my room. They will let you out for a funeral (this I know for fact). The main problem is the insurance companies. They believe if you are healthy enough to leave the hospital, you are healthy enough to go home. For CF patients (and I'm sure many other long-term patients), this simply isn't true.
I currently have three IV meds a day, four Chest PT treatments and 2 nebulized treatments. Two of my IV meds are every 12 hours and one is every 8. This means I get meds at about 7am, 10am, Noon, 6pm, 7pm, Midnight and 2am. I'm sorry but I don't know anyone with enough energy to be concious and able to give their own meds that many times a day. Add the pills, the 4 chest therapies and the 2 nebulized treatments and it's just nuts. I only have to be awake here for the 4 chest therapies, the nebulized treatments and meals - and that in itself can be draining.
I think I should have been able to leave to visit a park on a nice day. I wanted to get my haircut. I'd like to see a room other than my hospital room. I'd like to breathe fresh air. I'd like to hang out with my friends somewhere else besides my tiny hospital room.
Two weeks is alienating. And then I have trouble adjusting to real life again - my friend Lauren and I call it Post Hospital Stress Disorder. When I get home I'm overwhelmed with all my sudden responsibility for myself - like, you know, eating and brushing my hair.
I wish they could let us leave and go rent a new movie because I'm tired of watching everything I've already watched.
Excuse the dust, my inability to be polite showed up - Last week the girls an I visited Disneyland to celebrate Marlo’s ninth birthday (this whole thing happened NINE YEARS AGO) and yes, while I was very busy s...
2 days ago