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How Do I Get Into a CF Treatment Routine?

Morning RoutineI got an e-mail from a new reader. She’s college age (I call them “the unfortunate years“) and wasn’t doing treatments and had to pay the price by taking a semester off. Her question reads:

I’ve gone so long not doing the things I need to stay healthy, that building up a routine for myself and sticking to it has been hard to do. Do you have any tips on getting yourself into a good routine? I do the Vest, Acapella, Pulmozyme, 7% Hypertonic Saline, Cayston, Tobi, and Colistin. When I ask at my local CF center about tips they say “Well, just do what we tell you.” which is correct, but I thought someone who juggles a full CF routine and a life may be able to help me a little more. Thanks for writing your blog. Thanks for being so honest. You’re doing a great thing!

Is there a single one of us who hasn’t heard this from our CF doctors at some point in our life? That’s a great question and one that I didn’t have an answer for until too long ago. Each of the last 3 times I’ve been to clinic complaining about feeling run-down and easily short of breath, Bill (the clinic’s RT) would tell me to do aerobic exercise for 30 minutes 5 times per week.

I’d nod my head like one of those drinking bird toys, knowing full well that I 1) didn’t have energy to exercise and 2) I didn’t have any more time in my day that wasn’t taken up by eating, treatments, running the business, and resting enough to continue doing all of the preceding items.

Then Spiriva changed that. I started on Monday morning after 2 days of DuoNeb and felt so good that I declared it was time to walk after treatments. Thus it started. I walked Monday straight though the weekend and the next week until it was finally too cold on Sunday before church and I was too exhausted afterward. I got right back into it Monday and every other day. In 15 days, I’ve exercised between 0.58 and 1.13 miles for a total of 9.81 miles that I wasn’t getting before exercising.

Back to the treatments part of my routine. Now realize, the only thing that changes with my scenario is this: I can get up whenever the heck I want because I’m my own boss and I don’t schedule calls before 11am EST for the very reason that if I either need or want to sleep until 9am, I can. Sometimes I actually have to. See my recent article on keeping your reserves up.

When I had a desk job, I had to be out the door at 6:20. Did I always do my meds? No, but I paid the price by being on IVs every 6 months. If I had it to do over again, I would do it right because of 2 things: I know how bad you feel at 30% FEV1 and I know that the right combination of meds really does change your quality of life. Carrying a portable O2 tank to your cubicle in the far end of the second floor of a factory to put in a 40-hour week is no fun.

Without further ado, here is my routine: (adjust morning times by wake-up time)

  • 6:30am – wake up, take a 200mg caffeine pill, and gather meds
  • 8:30 – finish meds and take Spiriva
  • 9:00 – walk for 10 minutes on weekdays or 20 minutes on weekends
  • 9:30 or 11:00 (I like Netflix Blu-rays in the morning for creativity) – hit the desk and work until noon or 1pm
  • Lunch
  • 1pm – a common consultation time with clients after my lunch when I’m sharpest, otherwise, start working
  • this is where it can start varying based on my mood, the flow of work, or presence of DVR’d shows
  • 4pm, 5pm, or 6pm – stop working and eat dinner with Beautiful
  • If I stop at 4, it’s because I need to unwind a lot and watch a movie or 2 shows.
  • If I stop at 5, it’s because I need to unwind some, so I play a computer game.
  • If I stop at 6, I may bring too much work talk to the table and unload my day instead of being polite.
  • 7pm – treatments all over again
  • 8:30pm – watch shows, Walton’s DVDs, or DVR’d shows with Beautiful
  • 9:30-10pm – generally in bed
  • 12pm – bedtime if I had a rough day with clients and I need to watch more TV or blog/market research my favorite industry experts.
  • Rinse and repeat.

Write out a plan and stick to it. I know that after the first week, I actually looked forward to my walking time to listen to podcasts and try to beat my times. Monday was the closest to a 16-minute mile I’ve had yet. By May, I want to walk to our mailboxes (0.21 miles) and then jog back.

The idea of a routine is that you do A followed by B followed by C and so on without giving any thought to it.

Do something for 5 days in a row and it becomes a trend. Do it for a month, it becomes a habit.