A Day in the Life with CF

Here I am, vest strapped on and nebulizer strapped in my mouth, still trying to get used to this morning schedule, knowing I should wake up a little earlier. Getting in the habit of going to bed earlier may be a struggle for a while...

Every CF patient has their own conditions and a customized routine. Here is a typical day's schedule in my life looks like. The purpose of this post is not to draw pity to myself but simply to educate what it's like to live with CF and show that when you have those days when you wake up, wondering how in the world you can do what's ahead, you can if you try. Some days' schedules vary, but the treatment and medication times are just about the same each time.

6:00: wake up
6:20: morning routine:
      -Vest treatment (while multi-tasking with scripture study.) Medications: Albuterol, HyperSal, Pulmozyme, Duolera & huff coughs every 5 minutes--50 minutes
      -Every other month: Cayston afterwards--15 minutes with setup, taking the medication, and cleaning the pieces. (This is when I will for sure need to wake up earlier.)
      -7:15: Get ready for exercise
      -7:20 Leave the house for gym.
      -7:30-8:30 Exercise--Alternate days between cardio and weight lifting
      -8:45-9:00--Breakfast
      -9:00-9:45 Get ready for the day
      -9:45--Leave for class
10:00-12:00 Classes (Physiology, Career Strategies, Intro to Family Processes)
12:00-5:00--Lunch, work, TA help, study groups, phone calls to refill meds, and homework time
(When on Cayston--12:00-12:20 for assembling, taking it, disassembling and cleaning the pieces.)
5:00-5:45:(It varies on the day--sometimes quicker or at a different time)--Dinner prep. (Treatment at this time when I am on Cayston).
6:00: Dinner (as much as I love to cook--thank goodness for leftovers made from Sunday, as well as Crockpot meals, to take away time some nights from cooking)
7:00: FHE on Monday's, otherwise HW, sometimes review sessions
8:00-8:40: Vest treatment (while multi-tasking with homework assignments.) Medications: Albuterol, HyperSal, and Duolera, with huff coughs in-between (40 minutes)
9:00: Sterilize pieces and take nightly meds
9:30: Pack lunch for next day. Take time to dwindle down
10:00: Finish getting ready for bed
10:30 (Usually 11:00): Sleep

Treatments=keep lungs clear to prevent infections
Food=not only for nutrition but to also maintain a healthy weight for fighting infections when they come, since they cost our bodies more calories.
Exercise=keep lungs clear and strengthen our lung function. Building muscles and endurance allows us to better fight off infections, as physical activity keeps our immune systems more up to speed.
Medications=vitamins that our bodies cannot absorb, pancreatic enzymes since our pancreas does not produce the enzymes needed to break down food, and inhalation medications to take with every treatment.

A lot of times "the routine" can make me hit my pillow hard in the evening. I would say that as my schedule is full every day with hours to stay well as well, it makes me want to make each hour count and live each day to its fullest. Many of these mornings I feel as if I wake up with blood shot eyes, wondering how in the world I will be able to do another treatment or workout that morning or complete what the day has ahead. It teaches me that when you do not think you can do hard things, you realize you may have completed either the same routine or hard things before, giving hope that you can complete what may feel frustrating, tiring, or impossible. No matter what, though, CF makes me better appreciate my abilities and all the blessings the Lord provides. CF helps us understand how each day--each breath--is gift, as we become more appreciative of all we have.