Thursday, July 21, 2016


12am: sleep
6:15am: wake up
6:30am: morning routine:
            -vest & albuterol, hypertonic, DNASE treatment = 35 min
            -set up/take down = 10 min 
            -cleaning equipment = 10 min
            -TOBI treatment = 35 min
            -sinus flush & "morning pills" = 15 min
8:15am: dress, breakfast, misc
8:30am: leave the house
9:00am: exercise
11:00am: protein shake and "midday pills"
12pm: shower & get ready for the day
1:00pm: lunch
2:00pm: afternoon vest treatment = 35 min
                setup/take down = 10 min
3:00-5:00pm: errands/pick up RX's/dr. appt/call insurance/organize pills 
(Whatever exists on that days agenda. Not a day goes by that I don't have to do something in regards to my medical care.)
5:00-5:45pm: prep dinner
6:30-7:15pm: eat dinner, "evening meds"
8:00pm: nightly vest treatment = 35 min
            setup/takedown = 10 min
            TOBI treatment = 35 min
            nightly routine & "bedtime meds" = 35 minutes
10:00pm: sleep

Treatments = keep lungs clear and free of infection. 
FOOD = maintaining proper weight - weight is an asset to CFer's, the more weight on the body the more defense to fight against infections. 
Exercise =  strengthen our lung function and build muscle. A strong body gives greater force behind coughs to clear the mucus from our lungs and keep the bacterial infections away.
Pills = help our organs function properly, and overcome the vitamin deficiencies from lack of absorption of food.

Somewhere during our days we find the time to do all the other "normal" stuff: things around the house, make our beds, paint our nails, unload the dishwasher, clean, see friends, work, and in my case - do "mom" things!

But each day, brings another day of life. Another day of breath, and let me tell you - we are grateful. Grateful for each day. CF brings you gratitude, whether you ask for it or not.

1 comment:

  1. Even though we have been friends for a few years I am still learning so much about CF and love hearing your perspective. Love you Mand! 💪🏻