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.
medications;
*Neilmed Sinus Rinse
*Albuteral Sulfate-3ml
*Pulmozime-2.5ml
*Flonase-50ml
*Omeprazole-20mg
*(CF source vitamin)ABDEK
*Extra Vitamin D-1,000UI
*Advair Inhaler-115/21
*Albuteral Inhaler-90mcg
*Tobi-300mg
*(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)
routine;
***Morning***
-VEST(30 minutes)
-Albuteral
-Pulmozime
-Tobi(every 28 days, so i'm on Tobi for 28 days then off Tobi for 28 days)
-Flonase
-Omeprazole
-CF source vitamin ABDEK
-Extra Vitamin D
-Advair inhaler
-Miralax(as needed)
-Enzymes for breakfast(6)
***Afternoon***
-Vest(30 minutes)
-Albuteral
-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)
***Evening***
-Vest(30 minutes)
-Albuteral
-Pulmozime
-Tobi(every 28 days, so i'm on Tobi for 28 days then off Tobi for 28 days)
-Flonase
-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"
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.
ReplyDeleteKeep up the great work! Also, I'm following your blog now, so I'll be checking back often. ;)