Living with Cystic Fibrosis (CF) means that every now and then my little lungs end up needing a good clear out with some strong drugs delivered intravenously. Currently, I need one of these ‘tune ups’ every 12-18 months or so. I tend to pick up bacteria and nasty airborne germs far more easily than the average healthy person.
This is because CF creates an evironment in the lungs that bacteria thrive in. Mucus isn’t readily cleared from the lungs and other organs in the body (like the pancreas) and this means uninvited bacteria can have a good old party down there and create some lung damage as they go.
So I am currently in hospital, on IV’s for a minimum of two weeks, although the IV’s can be finished off at home if progress is good. You would think that hospital would a bgreat place to rest but it isn’t. The truth about hospital stays is that you get very little rest!
I decided to write down my schedule today just to give you an idea. I think the care here is very good and I am not complaining but I would like to dispel the myth that hospital (at least for CF patients) is a good place to rest. NOT.
Yesterday, I wrote down a list of everything that happened – take a look for yourself:
6am First intravenous drip. 25 minutes long
7.50am Finger pricked and blood sugar readings taken
8am Breakfast. Yay!
8.30am Morning observations
Blood pressure, oxygen saturation and temperature taken
8.45am PICC line inserted. A long line to help administer intravenous
meds. Took 45 minutes. Ouch!
9.30am Exercise session arranged with physical trainer
9.40am Menus – choose meals for next day
9.45am Bloods taken for further testing.
9.50am Cleaning lady in room cleaning
10.05am Intravenous meds administered and old temporary IV line
removed.
10.10am DNAse nebuliser. Meds that I inhale through a nebuliser 3 times
most days
10.20am Dietitican
10.35am Physiotherapy session to help clear lungs
10.37am Physical trainer again to reschedule exercise
10.40am IV meds finished and flushed
10.45am Doctors visit to update me on tests etc. All quite gloomy today…
10.55am Menus collected
11.00am Spirometry. Lung function tests to determine current function of
lungs
11.30am More pills brought to me to take. Steroids.
11.55am Blood sugar levels taken again
12.00pm Lunch. Yum…
12.40pm Lunch finished and tray collected
13.10pm Another intravenous (IV) med started
13.45pm Physio checking on next physio session time
14.05pm IV meds finished and flushed
14.10pm DNAse nebuliser
14.15pm Physio session
14.50pm Exercise session – cycling bike
15.35pm Blood sugar levels tested
15.45pm Bed linen changed
16.20pm More tests
16.30pm Personal trainer – rescheduling exercise tomorrow
17.40pm Housecleaning, cleaned room
17.50pm Blood sugar levels
18.00pm Dinner
18.30pm New dressing put in PICC line
20.20pm Observations – blood pressure, temperature etc
22.00pm Last IV for the day
Not much resting going on but still I am happy to be receiving great care. In the old days, I remember being able to nap more in the day but modern day life in hospital seems to be matching the world outside of hospital. Incredibly busy and always something going on. No naps allowed!
Mandy X