The Joys of having CF

The Joys of having CF

Wednesday, July 28, 2010

My Medicine List/Routine

So, for this post(while the internet is still working) I thought I would do a post on what medications I take and when. Sort of like my routine. It's very similar to most CFers routines but some CFers have MORE, and some have LESS. It all depends on the person, and there genes.

Now both of my mutation/genes are the Delta F508. Delta F508 is one of the most common genes/mutations, and can be one of the most serious ones to.

Now to start-I'm going to do just a plain list of my medications, and then do my routine.


*Neilmed Sinus Rinse

*Albuteral Sulfate-3ml




*(CF source vitamin)ABDEK

*Extra Vitamin D-1,000UI

*Advair Inhaler-115/21

*Albuteral Inhaler-90mcg


*(Enzymes) Pancreacarb MS16-6 with every meal, and 3 with every snack. **will be changing to Creon 2400usp, will be 4 with every meal, and 2-3 with every snack**

*VEST-30 min 2-3 times a day

*Miralax(as needed)



-VEST(30 minutes)



-Tobi(every 28 days, so i'm on Tobi for 28 days then off Tobi for 28 days)



-CF source vitamin ABDEK

-Extra Vitamin D

-Advair inhaler

-Miralax(as needed)

-Enzymes for breakfast(6)


-Vest(30 minutes)


-Enzymes(usually 3-4 snacks in the afternoon, averaging about 9-12 enzymes in the afternoon)

-Albuteral Inhaler(as needed for exercise or any activity/sport)

-Enzymes(6 for lunch)


-Vest(30 minutes)



-Tobi(every 28 days, so i'm on Tobi for 28 days then off Tobi for 28 days)


-Advair inhaler

-Miralax(as needed)

-Neilmed Sinus Rinse(usually every other day)

-Enzymes(6, for dinner)

So if you lost count on Enzymes that is a grand total of about 30 pills a day NOT counting all the other ones, so, a grand total of about 33 pills a day. Usually more, plus then all the other things.

Do I complain, absolutely NOT, because it's just part of my "NORMAL" everyday life. My daily routine just might take a little more time, but that's okay. Having CF has made me the person I am today, I don't regret anything about my life, having CF has made me who I am. I am just a normal 15 1/2 year who just happens to be living with an incurable illness, and you know, I must say, I LOVE my life. Don't regret having CF, it just makes you the person you are and I totally believe that CF makes you a stronger person. We know how to fight, and we know how precious life can be, so don't regret having CF, cherish the fact that you have CF.

So I hope this helps you understand a little bit of what my life is like at 15 1/2 living with Cystic Fibrosis-an incurable illnes--taking steps for a cure one day at a time. **I hope you all remember that there is research going on right now and they think that it is the cure for CF, and studies are showing a very positive outcome, so do as much fundraising as you can so there is enough money for research to keep happening.**

Have a good day!! REMEMBER;

"don't let the illness run your life, live your life around the illness"

Here's A Story I found and I love it, it truely brings the true meaning of "life is precious"

1 comment:

  1. I admire your attitude, Paige! I'm also impressed that at such a young age you understand the reality of this disease and the importance of treatments, exercise, compliance, etc. That's certainly more than I can say for myself when I was a teenager.

    Keep up the great work! Also, I'm following your blog now, so I'll be checking back often. ;)