Monday, October 31, 2011

A Day in the Life

I was looking through my old blogs, and I realized that I have never done a post about what my day looks like with all of my medications and treatments. I feel like it is important to share that with everyone, because for someone who does not have CF and has not really been around someone who has it, Cystic Fibrosis can be a very abstract thing. The amount of work that goes into keeping a CF patient healthy is astronomical, and as you read through my day, you have to realize that there are a lot of people who have to do even more than I do. So, let's jump right in. This is a typical day for me:

7:00 am - 1st breathing treatment of the day :
                            5 blows on the Acapella

                            2 puffs of Albuterol
                            The Vest for 20 minutes

                            Hypertonic Saline about 15 minutes (inhaled saline solution..... makes me cough a lot)
                            Pulmozyme (inhaled medication) about 15 minutes
                            Tobi or Cayston depending on the month. I alternate those 2 every month. Right now I'm
                                    on Tobi. Tobi is inhaled and takes 10-15 minutes. Cayston is also inhaled
                                    but only takes about 5 minutes.
                            1 puff of Advair

          *Total of close to an hour if I'm on Tobi and 40 minutes if I'm on Cayston.

8:30 am - I take a Nexium, vitamin, and Azythromycin

8:40 am - leave for work

5:00 pm - get home from work
                If I'm on Cayston, I do my second does of it now.  5 minutes

6:00 pm - workout (an hour or more depending on the workout)

7:00 pm - 2nd vitamin

9:00 pm -  2nd full breathing treatment of the day:
                            5 blows on the Acapella
                            2 puffs of Albuterol
                            The Vest for 20 minutes
                            Hypertonic Saline 15 minutes
                            Tobi or Cayston - Tobi (10-15 minutes) Cayston (5 minutes)
                            1 puff of Advair
           *Total of close to an hour with Tobi and 40 minutes with Cayston

Before bed - 2 squirts of Flonase in each nostril

Every time I eat, I have to take digestive enzymes as well. I take 6 with meals and 4 with snacks.

 Again, I do not have the biggest and longest regimen of those who have CF. Mine is kind of in the middle, but there have definitely been times where I have struggled with spending all the time necessary to do the treatments. That is always a huge struggle for me, because, there is always something I'd rather be doing. I'm working on that though, and it is slowly starting to pay off as I saw last week at my clinic appointment.(FVC went up to 82% from 70%. FEV1 went from 45% to 54%.)  My goal for the next clinic appointment is to get my FEV1 up to 60%. How do I plan on doing that? 100% compliance with my medicines and treatments..... and keeping up my P90X workouts. I will keep you updated on my progress. :)

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