Speaking from Experience

Anna, age 29

“With all there is to do for CF, make sure you do something normal every day. It’s good for your spirit.”

Maggie, age 23 

"I am a procrastinator my nature. But I’ve found having a set routine up to the very minute is helpful. Every day my alarm goes off at 8 a.m., and I don't allow myself to get out of bed past 8:05. I start my treatment no later than 8:20 a.m. and make sure I finish by 9:30.

“This is how my whole day goes. I do not let myself start my afternoon or evening treatment after a certain time, otherwise the rest of my day is off. The more routines I set, the more I am able to manage normal things like socializing and spending time with my fiancé."

Kristina, age 35 

“I use a routine/medication checklist. I print the list and put it in a sheet protector. Each day I use a dry erase marker and slowly check off each part of my routine. In late-stage CF, there is a lot to remember. This checklist helps me relax and not have to worry about what I am forgetting.

“I was working part time for a few years and returned to full time almost two years ago. It helps to be regimented. On weekdays, my schedule is usually wake up and do a sinus rinse immediately (it's a quicker alternative to coffee), then saline and vest. Then I’ll eat breakfast since I don't like vesting on a full stomach. Then TOBI® or Cayston®, inhalers, then on to normal getting-ready stuff, like taking a shower, etc.

“I've gotten into the habit of taking all my BID [twice a day] pills with breakfast and dinner. This supposedly helps the absorption since it's combined with food and enzymes. I'll take an inhaler throughout the day at work when I start feeling extra tight or congested, and can luckily close my office door and blinds for 5 minutes while I take Cayston® in the afternoon.

“I always keep enzymes and snacks in my desk, and I'll send emails to my personal email account when I need to bring in a new bottle. At night, I'll usually get my treatments and vest in after my dinner feels digested, or before I eat if I have something time-consuming later in the evening.

Eric, age 34 

“I've come to realize the extra time it takes for CF stuff is not that dramatic when I compare it with people with kids and long commutes. TOBI® months can be tough because it's an extra half-hour or so in the morning, but it's manageable. Though sometimes this can be too rough if I'm really not feeling well. I plan to work part time from home again one day when I'm really not feeling up to the CF and work challenges.”

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Updated 8/7/13