Sunday, January 20, 2013

CF Life Take 2

Looking back at some of my old posts, I found one I wrote about what a day in my life looks like. It's amazing how much things have changed since then. I have moved, treatments have been changed, and I finally found a full-time teaching job. So I thought it would make sense to do another post about what goes on during one of my normal days.

Every weekday starts at 5:00 am. I do my first breathing treatment of the day which includes my Acapella, Albuterol, Vest, and Advair.

This is my Acapella. I blow into it five times at the beginning of each treatment. 

 During my breathing treatments, I wear my Vest for 20 minutes. The Vest inflates, and the machine that it's attached to makes the air pulsate. This causes the Vest to shake which in turn shakes me. The whole point of it is to try to loosen the thick, sticky mucus in my lungs. It causes me to cough... many times, hard enough to cough things up.

Before beginning my Vest, I also use Albuterol. I inhale two puffs using a spacer.

While I'm doing the Vest, I also do two different inhaled treatments. The first is called hypertonic saline. This is basically a salt solution that serves the same purpose as the Vest. It is to stir up everything in my lungs in order to break it up and cough it out. This usually takes around 10 minutes or so to complete.

Next I do a medicine called Pulmozyme which is supposed to help thin my thick mucus. It is also made to help get some of the mucus out of my lungs. It takes about 5-10 minutes to complete.

I finish up the treatment with Advair. I only do one puff at this time.

The top is Albuterol with the spacer. On the bottom, is Advair.
After my morning treatment, I get ready for work. I leave for work around 6:30 am, and I usually don't get home from work until 4:30 or 5:00 pm. Throughout the day, I have to take digestive enzymes every time I eat. Because the mucus in my body blocks the ducts in the pancreas, I'm not able to release the enzymes that break down food. I take six with meals and four with snacks.

The other pills in that picture are my vitamins which I take two of everyday.  The white one is Azythromicin. I take that one on Monday, Wednesday, and Friday. That little purple pill is Nexium. I have to take that because too much stomach acid can cause my digestive enzymes to not work as well.

When I get home from work, I do a workout right away. My workouts are usually between 30 minutes and an hour. Later, I do a second treatment which is the same as my morning treatment minus the Pulmozyme. When I'm sick, they ask me to do three or four treatments until I get back on my feet.

I have struggled my entire adult life with keeping to the routine. When I started college, I was fed up with it all. I decided to take my independence and put it towards not having to do my treatments. I pretty much stopped doing them all together, and I loved every minute of pretending I didn't have CF. My lung function dropped drastically while I was in college, and it wasn't until I was told by my doctor that I might need a lung transplant soon that I finally woke up. I started doing my treatments again and watched my lung function numbers rise significantly.

Even with the proof that my treatments and exercise work, I still found/find it difficult to commit the time to it. It is an everyday struggle for me which was made more difficult by having a full time job. I'm finally getting to place where I have figured out the schedule and how to make it work. It's a constant battle and work in progress.


  1. Thanks for posting this! I am a mom of a 3 year old with CF and love to read your blog because you are always so positive and proactive. I like to get a little glimpse into how my son may be 20 years from now.

    1. Thank you so much for reading! That is exactly why I started my blog. CF is such a big question mark. Not many people know what it is, and the future can be so uncertain for those who have it. Thanks for being proactive for your son! He will appreciate it in years to come. :)

  2. Wow Kayla! Let me just saw that as someone who sees you almost every day that I had NO idea how much your daily life is effected! You are such a strong person, and we can all learn a lot from you!

    1. Thanks, Ashley! There is a lot of time and effort that goes into keeping myself healthy. :) It's just that usually, I don't have to do any of that at work.... unless I get the flu. Ha!