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"


Hello Everyone--I apologize for being MIA(missing in action). We have been having let's say Internet Trouble. It's being very trying with the internet at our house lately. As soon as the internet is *stable* I will post more.
As for my health, it has been going great. I had annual studdies last week and my lung functions are up by 1% again. I believe my FEV1 is at 94%. Which is good. Last time it was 93%. I did loose about 4lbs, but it is still in the healthy range and they are not worried at all, but they were surprised that at 15 1/2 that I grew again. I believe I am officially 5'5". I'm still *short* but I like my height. I hope everybody else's health is going good, and I will update A.S.A.P. Have a good week & weekend. Stay Healthy, and enjoy the lovely sunshine.

Friday, July 9, 2010

~Lungs on Vacation~ {UPDATE}`

Hello...I just wanted to do a post updating about earlier in the week. Well, it's been a little bit of a roller coaster. First, Tuesday, we heard back from my specialist in Minnesota. They had wanted to see me, but we would not have been able to get there by the opening they had. So then they asked if we could go get a X-ray at our local clinic/hospital, where my Pediatrician is(he's the person who diagnosed me with CF at 3 months old), anyway we had the X-ray at about 5:30 p.m. (ish). We go back to see the Dr. and there was the starts of pnemonia, but nothing he was to concerned with, he had said it was my choice if I had wanted to go into the hospital. Well, I wasn't in the mood for a "summer vacation". So, we left, and he had said to just call him if I felt like I wanted/needed to be admitted. The offer is "still pending". So then we called Minnesota back the next day, and they had said it was my choice if I wanted to come down and see them, well I decided not to. So I decided to up my VEST treatments. *sidenote*(my mom and dad have a business, called Mona-Vie. It is all natural health drinks, and there is one that will help the respiratory and immune system.) So anyway I decided to just literally CHUG a TON of it. They are 25 oz bottles and I'm already starting my second bottle. Now the juice tastes really good, so that doesn't bother me. So, I woke up today(Friday), and I was feeling better. Now don't get me wrong I'm not 100% better, but it's getting there, I call it "miracle juice" but it is working. The juice is amazing. It gives you the servings of fruits and vegetables you need 13 servings. So, up until now, I blame the juice for making me start to feel better and you can all bet that I'm NOT going off of the juice EVER!!! It is amazing. So, as of now, I am starting to feel better. YAY!! So, I hope everyone has a GREAT weekend, and will post soon =)

P.S. I hope you all pray for Connor Jones. He losed his battle with CF and Prune Belly Syndrome at the young age of 7. His mom has a blog, They are an amazing family, and I hope you pray for the Jones family.

Monday, July 5, 2010

Whose the Best Doctor?

I called the post "whose the best doctor" because I believe that the best doctor in the world is...YOURSELF!! Now people are probably thinking that sounds crazy, but I am serious. You are the ONLY one who knows YOU best!! Now, I respect my doctors and believe in my doctors 150%. I listen to them, and try to do everything they say, and they have the education to know what medicines to perscribe when you feel sick. Now, I am NOT saying not to listen to your doctors, but I am saying that YOU know you best, and if you are sick, YOU have to help the doctors by telling them what's wrong, so they can help you.

Now, the reason I bring up this reason is because the last 2-3 weeks I have been having lung pain. My lower left lobe of my lung has been hurting, and it has been difficult to take deep breaths. So, I told my mom, and because I take Tobi every 28 days, it was almost time for me to start Tobi again, so we thought that Tobi would help. Well it's been almost 2 1/2 weeks on Tobi, and no such luck. So today (Monday) my mom called my CF nurses at the clinic I go to (Fairview University) in Minnesota, and because it's the Monday after the fourth they were gone. So, tomorrow we'll hopefully hear back from the nurses, or my doctor and see where we go from there.

Now, as I said, YOU are your best doctor.

So, PLEASE remember to ALWAYS do your Medicines, and do what your doctors tell you to do.

I will keep you all posted and keep you updated on what I hear from my doctor/nurses.

Hope you all had a GREAT fourth of July.