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Friday, July 31, 2009

Update on the Astros Game!

Today I managed to finish a slideshow of the pictures from the astros game I went to last Friday.


I was doing my vest today and got a phone call from my favorite nurse Brooke!! She reminded me that I have a doctors appointment this monday and I'm due for my annual
Oral Glucose Tolerance Test, or OGTT. I am so exited for my doctors appointment coming up! It's the first one in a long time I can't wait for, I'm READY!!!

I've gained about 10lbs since the last time I went and I feel pretty good about my lung functions, but I'm not getting my hopes up. As I always say, "Lets hope for the best, and prepare for the worst."

I also learned that a morning workout is 100x better than a night workout, or mid-day workout, because as I go through the day I put off my workout more, and more. I realized it's better to go ahead and get it over with in the morning. So today is the end of the nightly workouts and I will get up bright and early at 7am to start my routines.

I will eventually get into the habit of going to sleep earlier and waking up earlier day by day, in 1 hour increments. Today go to bed at 12am, wake up at 7am, tomorrow go to bed at 11pm and wake up at 7am, the next day go to bed at 10 wake up at 6, until I get a steady pace of going to bed at 9 and waking up at 5am.

Thats all I got for today here's my NO EXCUSES for ya!



Cereal x2-600calories
Ensure- 350calories, 13grams of protein

Mashed Potatoes and Noodles- 1,200 calories
2 Ensures- 700calories, 26grams of protein

Chicken Breast- 400calories
Ensure- 350calories, 13grams of protien

6 Ensures(on milk drip)- 2,100calories, 78grams of protein




P90x Shoulders and Arms

Warm Up- 10min
Alternating Shoulder Press- 10 w/ 20lbs
In & Out Bicep Curls- 10 w/ 20lbs
Tricep Kickbacks- 10 w/ 15lbs

Deep Swimmers Press- 8 w/ 15lbs
Concentration Curls- 8 w/ 20lbs
Chair Dips- 45sec

Upright Rows- 10 w/ 20lbs
Static Arm Curls(light weight)- 8 w/ 15lbs
Flip Grip Tricep Kickbacks- 10 w/ 10lbs

(wow! only 24 minutes to go!)

Seated Shoulder Flys- 10 w/ 15lbs
Crouching Cohen Curls- 8 w/ 15lbs
Lying Down Tricep Extensions(my favorite!)- 10 w/ 15lbs

Straight Arm Shoulder Flys- 10 w/ 10lbs
Congdon Curls- 10 w/ 15lbs
Side Tri Rise- 16 on each side


In & Out-25
Seated Bicycle- 25 forward, 25 backwards
Seated Crunchy Frog- 25
Crossed Leg/Wide Leg Sit Ups- 25
Fifer Scissors- 25
Hip Rock 'N Raise- 25
Pulse Up (Heels to Heaven)- 25
V-Up Roll Ups- 25
Oblique Roll Ups- 25 on each side
Leg Climbs- 25
Mason Twists- 25Stretch

Whew! That was a WORKOUT!!! I think I broke a sweat!


11:00am- Albuterol & Vest
11:20am- Hypertonic Saline(while on Vest)
11:40am- Pulmozyme
12:10pm- Flovent

3:00pm- Albuterol & Vest

5:00pm- Albuterol & Pep

10:55pm- Albuterol & Vest
11:05pm- Hypertonic Saline(while on Vest)
11:25pm- Pulmozyme
11:35pm- Colistine

Thursday, July 30, 2009

Ipod touch+Vest=HIGH SCORES!

Today I'm taking the time to reply to all the messages and comments sent to me about my blog.

What ever suggestions about my daily routine, or if you have anything you want me to write about on my blog, Feel free to message me!!

I also want to make my blog the best it could be, I want it to be easy to read as well as informing and entertaining, so I try to keep the writing short. On the other hand it wouldn't matter to me if 1 or 1,000,000 people read my blog as long as that 1 person that DOES read it gets inspired to get on track with their medicine schedule, learns to lean on God through the good AND the bad, or just plain gets a better understanding of CF and tries to make the best of it.

While I was on my Vest today I learned that as well as serving a good purpose to my lungs, it can also give me the best high score ever on a game called Tap Of War, kind of like Tug Of War.
Is that cheating? Certainly Not. Right? lol

My high score is 1,695! Can you beat it?

Also, I'm currently working on a Cystic Fibrosis awareness video and I will post it as soon as I get finished, I would appreciate it very much if you guys AND GAL's (wink wink) would watch it.



Egg Sandwich- 250calories
2 apples

Some kind of concoction of Macaroni, chili, and potatoes! (it was gooood!)- 400calories3 ensures- 1,050calories, 39grams of protein

3 ensures- 1,050calories, 39grams of protein
2 Hot Dogs-600calories

6 ensures(milk drip)- 2,100calories 78grams of protein


CURRENT WEIGHT- 129.6 (I actually lost 0.3lbs, YIKES!!)


(a.k.a. the mother of all workouts)
Most of the are 30sec because, come on, ANYONE can do something for 30seconds!

Warm Up- 7min.
Jump Squat- 30sec
Run Stance Squat- 30sec
Airborne Heisman- 30sec
Swing Kick- 1min
Squat Reach Jump- 30sec
Run Stance Squat Switch Pick Up- 30sec
Double Airborne Heisman- 30sec
Circle Run- 1min
Jump Knee Tuck- 30sec
Mary Kathrine Lunges- 30sec
Leap Frog Squat- 30sec
Twist Combo- 1min
Rock Star Hop- 15sec right, 15sec left
Gap Jump- 30sec
Squat Jack- 30sec
Military March- 1min
Run Squat 180 Jump Switch- 30sec
Lateral Leapfrog- 30sec
Monster Truck Tire- 30sec
Hot Foot- 1min
Cool Down

This workout really kicked my butt, I needed a shower BAD!!


1:30pm- Albuterol & Vest
1:40pm- Hypertonic Saline(while on Vest)
2:00pm- Pulmozyme
(still haven't got the sterile water for the colistine)
2:20pm- Flovent

4:00pm- Albuterol & Pep

6:00pm- Albuterol & Vest

10:00pm- Albuterol & Vest
10:10pm- Hypertonic Saline(while on Vest)
10:30pm- Pulmozyme
10:40pm- Colistine (Yay!! Finally got the Sterile water!)

After all that I managed to find one of my old ID's from the 9th grade and I thought I would Compare it to my other ones to see how I've grown, Check it out! (my favorite is the 9th grade one)


Wednesday, July 29, 2009

What do I do?

Today I woke up around 7am, but I didn't get out of bed until 10am. For some reason I felt sick today. Maybe its because I didn't get to bed until 2am this morning. Over the past week I've made some adjustments to my daily schedule, Instead of 2 Vest treatments a day I've been doing 4, Instead of 4500 calories I've been getting around 5600+ calories, and I've been exercising more than ever.

Unfortunately, my body is refusing to cooperate with me. My arms are sore, my chest is sore, and today I had some redness in my mucus. I don't want to push anything, so today I wont be doing any P90x:(

What I want to know from you guys is, what are some things I can do to keep the motivation?

What are some ways that I can keep my progress up?

What order do you guys do your meds, morning routine in?

Do you wake up, get a shower, treatments then exercise? or exercise, treatments then shower?

On a lighter note today I got to see LEELAND in concert at chic-fil-a, they were AWESOME! God is working in the hearts of people in Baytown tonight.
I got to get my picture taken with the DRUMMER from Leeland!! Not only is he the drummer of such an awesome band, he is also a good friend of mine and could be seen in our
Jesus Muzik video as Big Milky.

Here is the picture of us after the concert!

That's how my night went tonight, so if you would, please comment and let me know what I can do to improve my daily routine, or some ways you know to keep on schedule and tell my body "no! your not winning!! I will workout!!", There's no other way I can put it..

Thank you and God Bless!

-Casey Jones

Tuesday, July 28, 2009

Something New

As I've been reading more and more, finding out how many CF patients are healthier and feeling better through exercise, for example Ronnie Sharpe, a guy who has CF and RUNS! yes RUNS! miles a day! Along with him there are many other "CFers" who are exercising daily and are benefiting from it.

I wanted to experience this FIRST HAND, so today, I'm trying something new...well almost new.

I've had this set of workout DVD's that are supposed to get you ripped in 90 days, collecting dust(as many things workout related do) for almost a year.

They're called P90x, Power 90 Extreme, and it's packed with tons of cardio and weight lifting routines. I wanted to be the first "CFer" to try it. So starting today and for the next 90 days, I'll track my lung function, weight, as well as write down the workouts for that day.

I'll post pictures of my progress through the weeks. Today was day 1 and I started "Chest and Back"

Here is my day 1 picture



Hash browns- 580calories
Cherry Pancakes- 915calories
3 Ensures- 1,050calories, 39grams of protein

2 Ensures- 700calories, 26grams of protein

Cocoa Puffs- 390calories
6 Ensures(on milk drip)- 2,100 calories, 78grams of protein

Total Calories- 5,735
Total Protein- 143grams



Today I rode my bike 1 mile to warm up for my P90x Chest and Back routine.
Chest and Back

Round 1
Warm Up Stretch
Standard Push Ups- 10
Wide Front Pull Ups- 15(chair assist)
Military Push Ups- 10
Reverse Grip Chin Ups- 15(chair assist)
90 sec rest
Wide Fly Push Ups- 10
Closed Grip Overhand Pull Ups- 15(chair assist)
Decline Push ups- 10
Heavy Pants- 16reps w/15lbs
90 sec rest
Diamond Push Ups- 10
Lawnmower- 15 reps w/35lbs
Dive Bomber Push Ups- 5
Back Flys- 16 reps w/15lbs

After round 1 my little arms got tired so I had to move to my knees on the push ups:(

Round 2 (inverted of round 1)

Wide Front Pull Ups- 15(chair assist)
Standard Push Ups- 10 (knees)
Reverse Grip Chin Ups- 15(chair assist)
Military Push Ups- 10 (knees)
90 sec rest
Closed Grip Overhand Pull Ups- 15(chair assist)
Wide Fly Push Ups- 10 (knees)
Heavy Pants- 16reps w/15lbs
Decline Push ups- 10 (knees)
90 sec rest
Lawnmower- 10 reps w/35lbs
Diamond Push Ups- 10 (knees)
Back Flys- 16 reps w/15lbs
Dive Bomber Push Ups- 5 (knees)

AB Ripper X

In & Out-25
Seated Bicycle- 25 forward, 25 backwards
Seated Crunchy Frog- 25
Crossed Leg/Wide Leg Sit Ups- 25
Fifer Scissors- 25
Hip Rock 'N Raise- 25
Pulse Up (Heels to Heaven)- 25
V-Up Roll Ups- 25
Oblique Roll Ups- 25 on each side
Leg Climbs- 13 on each side
Mason Twists- 25


10:20- Albuterol & Vest
10:30- Hypertonic Saline
10:50- Pulmozyme
(no colistine) I ran out of water to mix it with:(
11:00- Flovent

2:00- Albuterol & Pep

8:00- Albuterol & Vest

10:00- Albuterol & Vest
10:10- Hypertonic Saline
10:30- Pulmozyme
(no colistine)

CF Doesn't Bring Me Down

Even when those dreaded Hospital Stays come around, I still don't let it bother me.

After I finish college at Texas Bible Institute, I want to go to Texas Art Institute to learn how to make professional videos and movies, I want to make christian based movies, something the whole family can enjoy! And I want to make music videos for Christian Artists, like the ones in my playlist.

I go into the hospital about 3-4 times a year, and even then I try to make the best of it. Everyone with CF will tell you, they are WELL known at the hospital, when I go in, the doctors, the janitors, the lunch lady, even the construction workers know my name, birthday, social security number....just kidding. But they do know my name, and I'm able to make some good videos because of it.

Here are 2 of my favorites, Hope you Enjoy!!

My lips dont line up on some parts of this one, but im told that's sort of my signature! Besides its hard to work with windows movie maker when it gets all freezy on ya!

This is when my friends Chris, Ricky, and (SCARLET) came to visit! That was a fun day!

Monday, July 27, 2009

What Kind of Exercise Do You Like Best?

Today was a great day! I was able to get some good exercise in, eat a lot of food, and over all I feel really good!! I'm exited to see what my results are going to be for my next Doctor's appointment. I've got a really good feeling about it.

I want to share with you some of my views on exercise. There are 3 types of people when it comes to exercise,(well actually 4 when you count those of us who don't exercise at all) but for those of us who actually do exercise, there's 3 types.

The first type is people who like the indoor machines, the Treadmill, Tread climber, Elliptical, etc. You wanna get a good workout, with out getting outdoors, staying comfortable as well occupying your time with some T.V. or music from your favorite playlist.

The second, are the ones who like the out doors, the runners, sprinters, joggers, bike riders, etc.
You like the outdoors and a little bit of sunshine doesn't bother you at all. (this one's my favorite:))

And the third, you've probably already guessed by now are the people who like both outdoors and indoors...
You like being able to have options, if its raining outside you can always jump on the stationary bike or if its a great day outside you can go out there and enjoy your summer day!

I like to spend my exercise time outdoors, I like to feel the wind and just be...outside. One of the things I wanted to bring up is why I don't like using treadmills, stationary bikes, etc. Now don't get me wrong, I do like this equipment and it does help but it does have its weaknesses.

When your on the treadmill or stationary bike, you use one form of gravity, you use your legs to move your body UP and DOWN on the the pedals, or the treadmill. This is great and everything, but after a while your body will get used to it, and you will start to notice a decrease in improvement.
This is when you need to change it up a little bit, Go OUTSIDE! When you run, walk, sprint, ride, etc. OUTSIDE you use another type of gravity that actually PROPELS your body forward. This is great because it builds strength in your legs, stamina, and endurance. When you run on the treadmill you don't get the FORWARD motion that your body needs to build strength, this is something you can't get artificially. You have to go outside and do SOMETHING!

It is important for CFers to exercise daily in order to get the most out of your lungs and improve them. Let's put it this way, If my lung functions are at 70% and I don't exercise, It only takes about 20% to take a breath, so that's 50% that I don't use. After a while, when I try to use that other 50% I'll wonder why I'm so tired. Your lungs have to be used on a daily basis, everyone has their own activity level, and it's important to reach it daily that way you can increase lung function, and build up your energy(activity) level each day.

That's all I wanted to say for tonight, Just kinda give my thoughts on how I think exercise should be. Now all of this is strictly my opinion and how I feel about indoor home gym systems.

Thank you guys for reading, If you have any comments feel free to leave them! Hope you all have a great night! Thank you:)

-Casey Jones



5 Scrambled eggs with ham & honey mustard- 1,370 Calories 56grams of Protein

Home Style Bakes Chicken and Mashed Potatoes- 850 Calories
1 box of butterscotch pudding- 660 Calories

Spaghetti- 650 calories
2 Ensure- 700 calories, 26grams of protien

6 Ensure(milk drip)- 2,100 calories 78grams of protein

Total Calories- 6,250
Total Protein- 160 grams


Today my goal was to go at least 3 miles on the bike, I only had 40 minutes of riding time in order to get back home in time to get my lunch out of the oven, but after about 2 miles, I was like, "this is cake!" and on the third mile I said, "one more" and on the fourth I said, "2 more", by the 5th mile it started raining and I had to go inside:( I wish I would have been able to get in one more!! It felt good today, I felt like my lungs were opening up more and I feel like my lung functions will be high next month if I keep this up!


11:35- Albuterol & Vest
11:45- Hypertonic Saline(while on vest)
12:05- Pulmozyme
12:15- Colistine
12:35- Flovent

2:20- Albuterol(inhaler) & Pep

6:00- Albuterol & Vest

9:00- Albuterol & Vest
9:10- Hypertonic Saline(on vest)
9:30- Pulmozyme
9:40- Colistine


Sunday, July 26, 2009


It is important to have a good schedule. Something to keep you on track and focused on getting yourself, or your child, as healthy as possible. Here are some things to keep in mind as well as things that I do to get myself healthy. I hope they help:)

Come up with a good system that will help you remember to take your pills and do your treatments.
One of the things my mom would do as a kid is rubber band my Enzymes to the fridge,

I love to eat and she knew every time I would reach for the fridge those enzymes would be right there on the handle, and I would remember to take them. It helps to leave little hints for yourself throughout the day also, If you don’t always remember to take your enzymes, tie a rubber band around your wrist that says enzymes. Or if it’s your treatments you forget, write the names of your treatments down on strips of paper and tack them to a bulletin board or keep them in your pocket.

Organization is key, you should have a place, whether it be your bedroom, living room, office, or whatever, for you to do your treatments at. This place should be entertaining for you so that you don’t get bored for the 30 minutes to an hour your on your treatments. My treatment area is in my bedroom(so I can shut the door, mostly because I’m a loud cougher). I have a computer desk set up with my Vest, Nebulizer, laptop and Tv. When I do my treatments I entertain myself by blogging, Twitter or Myspace. And if that’s not entertaining me that day, I usually watch some Tv.

I keep a trash can near by because I'm a big cougher.

I keep my pills throughout the week in mini Ziploc bags thumb tacked on a bulletin board, and each day I just take the pills out and throw the bag away. I put new bags with a new set of pills about mid-week. As far as treatments go, I just do as I said before, I cut strips of paper with the treatments name and place them in the bags.


It is important to have long-term goals, but it is equaly important to have short term goals. Whether they are monthly, weekly, or daily, short term goals give you sort of a boost of accomplishment that keep you going on to the next goal. Daily goals are the best for me. You can start off slow by saying, today I’m going to Eat this many calories, or I’m going to pray for 30mins before bed, or I’m gonna finish all my treatments for the day by 9pm so I can get some good sleep. Whatever your goal may be, set it. And work as hard as you can to accomplish it. You’ll find that the little goals you set today get easier and easier, then you move on to bigger ones like, I’m going to gain 10lbs and 10% lung function before my next appointment, or I’m going 5 miles on my bike at full speed. When you set daily goals your not only giving yourself motivation throughout the day, your also improving your own physical health and mentality. If you have a kid with CF, my mom used to make BETS with me, “I bet you cant eat 2 hamburgers and a hotdog!” You know? Or “I bet you can’t set up your pump before the next commercial goes off.” Whatever you gotta do to motivate your kid, DO IT!

It takes 21 times of doing something to make it a habit. If you can make doing treatments and taking pills fun for 21 days you can make it a habit for your child or yourself. Put on your favorite T.V. show, DVD, if you run a business from the Web, or just like being on the computer, get on the computer! If your little girl likes to play dolls, play dolls with them! If the boy likes trucks, play trucks! Once you make your treatment time and taking your pills a habit, is when its more than what you HAVE to do, it becomes what you WANT to do. Sooner or later your child will say “let’s play dolls!” or “let’s play trucks”, they will WANT to do their treatments! If you have CF and you WANT to get on the computer, train yourself so that when you get on the computer, you get on your treatments, then you will WANT to get your treatments so that you can check your e-mail, or updates on Twitter.

While I'm on my treatments I go ahead and set up my pump!

I use 6 cans of Ensure Plus, 350calories and 13grams of protien EACH!!

Keep track of what you do during the day, so that the next day you know what you did and you can know what to do the next day. Write down what you ate, what time you did your treatments, and the exercise you did, much like my NO EXCUSES blogs. If your wondering why your not gaining weight, or why your PFT’s haven’t gone up, keep a log or a book you can write everything down in, that way you can look back at it and you’ll know if you need to increase your treatments or eat more during the day. Writing it down is also a good way you can tell your doctor what you are doing and he/she can make adjustments on whatever your doing. I kept a log of what I was eating for a full month and kept track of my weight 3 times a day, In one month I gained 20lbs, my doctor was impressed and said I should tell all the Cfers I know, and here I am. So try it!

These are just a few things that I hope will help you out in getting healthy. Please take the time to try these things, they haven’t failed me yet. If theres anything I might have missed or didn’t go over, or if you have any suggestions on how I can improve my routine, feel free to message me at caseyjones343@yahoo.com

Thank You and God Bless!

-Casey Jones

2 Ensures
Cinamon Roll
Shells and Alfredo with ham
3 bbq Ribs
1 Boneless chicken breast
Potato Salad
6 Ensures(on milkdrip)
Today my goal was to ride at least 1 mile on my bike, I knew that I would be at church all day, jumping around so I set a goal lower than usual, unfortunatley as soon as I got home today, I slept. I slept from 2 to 4 o'clock, and had to leave for night service. Once I got home I exercised by running in place for about 15 mins. and did my stretch routine.
7:15- Vest, Albuterol
7:25- Hypertonic Saline(while on vest)
7:45- Pulmozyme
8:00- Colistine
12:45- Albuterol and Pep
4:00- Albuterol and Vest
10:00- Albuterol and Vest
10:10- Hypertonic Saline(while on vest)
10:30- Pulomozyme
10:45- Colistine
11:05- Flovent


Saturday, July 25, 2009

I got to sing the National Antem at the Astros Game!!!

Hey Everyone!!!
Tonight, unfortunately I wont be able to do the post I intended on doing, however I will leave you with a video of me getting to sing the National Anthem at the Astros game last night. We had a blast and I will be able to post more pictures and videos from the game sooon! But I am kind of tired , right now I am doing my nightly meds before bed, and I have to wake up at 7AM to do my morning ones before church!

Thanks everyone for the comments and for following me, I will try my best to keep you guys informed and entertained, and I hope you enjoy this video:



16oz Glass of Milk-
2 Ensures- 700 calories, 26g of protein
Hamburger rice medley(SOS) over 2 open slices of bread-400 calories, unknown protein
Banana- unknown calories, unknown protein
Shells and Alfredo with Ham- 400 calories, unknown protein
3lbs of Watermelon- 0 calories, 0 protein
4 Sloppy Joe sandwiches, and 2 Ensures-1,775 calories, 26+ grams of protein
6 Ensures (through milk drip)- 2,100 calories, 78g of protein
(All with Enzymes!)

Total Calories- 5,575+

Total Protein- 128+ grams

Goal Weight- 150lbs

Current Weight- 125.3lbs


Today my goal was to ride the bike for at least 3 miles, do my huff cough routine and then go inside, I ended up going a total of 3.2 miles, .2 being the cool down part of the ride and getting back home. So I met my goal for today!! (hoooray!)
And after I finished I got right into my routine and did my treatments, during my treatments I breathed in deeper than normal and felt a lot better throughout the day.


1:30pm- Albuterol and Vest
1:40pm- Hypertonic Saline(during Vest)
2:00pm- Pulmozyme
2:10pm- Colistine

5:00pm- Albuterol and Vest

9:30pm- Albuterol and Vest
9:40pm- Hypertonic Saline(during Vest)
10:00pm- Pulmozyme
10:10pm- Colistine

(NOTICE: My treatments do not start at 1:30pm, I woke up at 1 today, that's why they are so late because I didn't go to bed until 4am from the excitement from the Stros game!)

Wakey wakey eggs and.....Hamburger Meat??

Today a particular point was made to me, and it couldn't have been anymore clearer what I have to do.

When you have CF your gonna get sick, your gonna go into the hospital, your gonna go through tough times that many people may not ever understand.
But when you have all the tools necessary to prevent a problem and you still overlook them(meaning the tools) every day, and then one day you have a doctors appointment and your PFT's aren't as good as they should be, so you have to come in(meaning a hospital stay). So you get teary eyed, you start thinking "why me?" "my birthdays coming up next week and now I have to spend it in the hospital!" "why does everything bad have to happen to me?"

You wanna know why? You had the equipment needed to avoid these hospital stays and you know what you can do to prevent this from happening, yet you've ignored it for so long that it's too late.

When I realized this particular answer to a, what can seem like a hard question, I knew that, here I am coming up with solutions, and ways to help people with CF get rid of mucus, remember to take they're meds, and I'm the main one who IGNORES my medicines, "forgets" to do my treatments, and even ignores my own reasoning.

Now it's time to turn things around. From here on out I commit to doing my treatments when and how they are supposed to be done, No shortcuts! I know how some CFers(including me) like to try and pour out the last bit of Tobi, just so they can be done with it quicker. The road to hell as well as the road to sickness and disease is paved with SHORTCUTS!
Matthew 7:13-14 (The Message)
"Don't look for shortcuts to God. The market is flooded with surefire, easygoing formulas for a successful life that can be practiced in your spare time. Don't fall for that stuff, even though crowds of people do. The way to life—to God!—is vigorous and requires total attention.
I commit to not only this but to do my pills and get on my milk drip when I'm supposed to, NO EXCUSES!

Now, don't get me wrong I'm not saying, just because I will put in the time and effort needed to do all my treatments, pills, etc. on time doesn't mean that I will no longer get sick or never go into the hospital, It just means that I wont be at fault anymore, CF will.

By doing this I will post a daily Calorie counter which will tell everything I've eaten, the calories it has, the protein, my daily exercise, and the times I did my treatments...There will be an extended post at the bottom of each of my posts labeled NO EXCUSES, and this will track all my "to do's" of the day.

As well as provide my own personal information, I will also elaborate more on my scheduling system that I have configured over the years that really keeps me healthy and makes my PFT's go through the roof!(on my pft scale)

Friday, July 24, 2009

Would I Ever "Undo" Having CF?

Here's a Video Response to http://www.runsickboyrun.com/ 's Question:
If You Could Make A Choice Of CF or No CF What Would It Be?

(you may wanna turn your speakers up, I have a very bass voice!)

Check out my VEINS!?!?

DISCLAIMER: This video may not be suitable for people with weak stomachs, watch with caution.

These are what my veins look like after working out with P90x! Ha, and the nurses said I didn't have any....

Why cant they pop out like that when I need them to? Like at doctors appointments...

Thursday, July 23, 2009

My CF "firsts"

We all have our "firsts" in life that we go through, for example our first car, a first girlfriend, first kiss, first bike, etc. But when you have Cystic Fibrosis, growing up our "firsts" are....well, a little different.

Some of the "firsts" a CFer may go through, are some firsts that maybe someone without CF won't experience until they are a lot older, or sometimes not at all!

Here are some of my CF "firsts"


Cough- At Birth (August 15, 1990)

Shot- 5 hours old

Sugery- 6 hours old

Antibiotic- (see first shot)

Halloween Costume (in hospital)- 2 months old

First Hickups- 3 months old

Diagnosis- 3 months old

CF Doctor- 3 months old (Dr. Sielhiemer) she's been in the business for 25+ years!

Case of Pneumonia- 4 months old (due to asperation)

Breathing Treatment- 4 months old

Day Home- 5 months, 1 week, and 2 days old

Check Up- 3 days after my first day home

PFT- 8 months old

Haircut- 1 year old

Dose of Pulmozyme- 2 years

Sibling- 3 years old (april 30, 1993)

Day of School- 5 years old (August 22, 1995)

Hospital Stay During the School Year- (August 29, 1995)

Graduation- 5 years old (delayed due to surgery)

Real Friend- Morgan Williams (1st Grade) '96

Dose of Tobi-8 years old (it was still in clinical trial stage)

Nasal Surgery- 11 years old

Vest Treatment- 12 years old

Make a Wish Trip- 18 years old (March 16, 2009)

Longest Hospital Stay- 18 years old (40 days)

CF walk- 18 years (may 16, 2009)

These are just a few of my "firsts" and if you have CF your "firsts" may look similar to this, and I would love to hear about them just leave me a comment and tell me what you think or if theres anything else I might have missed and I would be glad to post it up!

Heres a picture you might enjoy,

Its me when I was in the hospital April 30, 2009

Sometimes a hospital stay will bring out your crazy side;)



Welcome to my blog! Let me tell you a little bit about myself before I go on,
My name is Casey Mcphail, but I go by Casey Jones (like the guy from the Ninja Turtles). The nickname was given to me in the third grade after passing out Ninja Turtle Valentines Day cards and from then on it stuck.
I'm 18 years old, and I live in Texas. I just graduated from Crosby High School and I start college September 12.
I am a proud believer in Jesus Christ and I attend church almost every day of the week. My church is Fountain of Faith Fellowship Church which is an Assembly of God Church in Baytown, TX. The website is http://www.thebaytownchurch.com/
The college that I will be attending is Texas Bible Institute(TBI) located in Columbus, TX. Its a two year college and I will be living on campus for the first nine months. Living on campus is something that I would definitely have to get used to.
When I was three months old I was diagnosed with Cystic Fibrosis, Cystic Fibrosis is a disease that is passed on when both parents have the defective CF gene. Many people have it and don't even show symptoms of it. Cystic Fibrosis is often described as a lung and digestive disorder that causes mucus to build up in the lungs to a point where your body has to fight everyday to get it out, and that is simply not the case.
My goal is to tell you all about what CF is to me before you "Google it". Something I've learned from one of my CF buddies, Ronnie Sharpe,
(You can follow his story at http://www.runsickboyrun.com/ and to see the email
exchange where I found alot of this out click on This LINK)
When someone googles CF they will get a bunch of facts and statistics that will leave you wandering why I'm still alive...so we won't go there! I'll tell you one thing right now, with the right attitude and support you will go a long way and me as well as many other "CFers" will tell you, Statistics do not apply to me!
The doctors described CF like this;
The CF gene is actually backwards, Instead of having two genes, one that produces mucus and one that gets rid of it, you have two genes that produce it. So in turn you have to do things to get rid of it yourself. Some examples of this include:
  • Breathing Treatments
  • Pills
  • Exercise
  • Chest Physical Therapy
  • Vest
  • Hand Clap
  • Pep
  • Flutter
  • Huff Cough
CF also effects the digestive system. The pancreas is responsible for producing pancreatic enzymes which are necessary to deliver nutrients to the blood stream, giving healthy nutrition to the body. This often poses a problem when mucus builds up in the pancreas blocking, or in some cases, completely stops enzyme production. Things us CFers can do to help treat this are:
  • Take enzymes provided by the doctor EVERY time we eat!
  • Cough up and SPIT OUT(do not swallow) mucus as much as possible.
I've lived my whole life on the upper hand of Cystic Fibrosis(for the most part). And I know that God has always been there for me and for my family through the good and the bad, (thanks to him more good than bad). I have had many hospital stays, about 3-4 a year 14-21 days at a time, I have had many surgeries including 2 Imbolization and a Cardio pulmonary infusion this past year, and with all that I still do my treatments and pills everyday.
I never let CF hold me back, or get in the way, or put me down. I'm always the guy who is making everybody laugh when you first walk into a room. I live my life day to day and keep a positive attitude about everything I do.
I created this blog to provide information as well as hope for many CF patients and parents out there so that they can learn and share similar situations CFers will go through, plus its always good to have someone you can talk to who knows what your going through. Feel free to send me a message anytime and I hope to hear from all of you soon!
-Casey Jones