Doctor's Appointment update!

Today was my first doctor's appointment of 2011. I am always paranoid that my appointment won't be good, especially when I don't even feel well. I kept my mouth shut this time even though I had accepted a bad report. Here are the stats:

Weight- 114.75 lbs... down from ~116.
FEV1- 72%! Up from 63%
Total capacity- 73%!! Up from 64%

WHAAATT?!! Both lung numbers are up 9%!! Dear friends, I have been preaching the miracle of Cayston without results, but now I have solid results: Cayston WORKS. Are you listening?!! It took me a few doses to get results, but I have results!!! 9%!! I've never had a jump like that before. I was blown away. Absolutely blown away.

Three words: God bless Cayston.

I also saw today JM who recently got his new lungs. He looks good and his mom said that he is doing so much better. That's such great news.

:]

-Andrea

Doctor's Appointment recap

First, I would like to say that I waste a lot of time worrying! And while it is a good thing to listen to your body and see what's wrong with it, sometimes our bodies aren't saying what we think they're saying. That being said...

I had a pretty good report! I gained weight, PFTs were stable, and my freaky lung pain is gone. We guessed that the lung pain was from my very sudden shift from a sedentary lifestyle to a very active one. My throat is hurting because I have a cold. That's all. A simple cold. No need for antibiotics, just to wait it out. AND, I was so worried about clinic taking the usual several hours and me missing my 1pm lab back at college, when this clinic visit only took and hour and a half! Shortest clinic ever! So not only did I make it back in time for my lab, I had time to eat lunch with the boyfriend too. Awesome!

So, here are the numbers:

Weight: 116lbs (up from 115)

FEV1: stable around 68%

I worry too much. lol

Starting Cayston today again.

Alright, time to carry on with my life. :]

-Annie

Post-Doct. Appointment

DONE. Yes! It is always looming, it seems, but one more check-up has come and gone! Report:

Weight: 115 (down)

FEV1: 70% (stable)

Small airways: down just a tad

Today was not a good day health-wise because I hadn't eaten since lunch yesterday because I felt full/sick, another reason my weight was a little down. On the plus side, my daily number of pills was dropped!! I no longer need to take a daily D vitamin (switching to a once-weekly), my E and K vitamins are dropped, I'm down to one mucinex, and not more Zyrtec unless I have symptoms. YAY!!!!!!

I'm trying out some new shakes, even though I love my old ones. These cost less. If I love them too, I'm switching. If not, I'm sticking with the ones I love!

Now that that's over, on to the rest of my life. :]

-Annie

OH! I wore my mask today at clinic!!! Everyone loved it.

What a week!

This really has been one of the worst/longest weeks of this quarter. And I'm so glad it's over.

Monday- A day off and I spent it doing homework.

Tuesday- I did my presentation and took my test. I did fairly well on both of them. I went to my lab, but due to a mix-up, came in late and got yelled at and kicked out. I cried because those lame miscommunications, when concerning school, don't happen to me! Luckily, I contacted my TA and got it all worked out. That night I played some soccer and came out with a bunch of bruises and a limp.

Wednesday- Didn't make it to my 8am (so tired...) but drove in for my doctor's appt. (summary after this). I went by Casey's house to visit her new puppy, which made me really happy! Drove back and went to a self-defense class that night. After that, I studied with a friend for a few hours until around 10pm. I was so tired.

Thursday- Went to my two morning classes and went to the lab right after that (on time!). Right after that, I had a soccer game and then studied until 11pm for a test the next morning.

Friday-8am bio test. Then I went and napped until noon. At 1:30, I did yard/house work to prepare for Sigma Kappa Parents Weekend, until 5pm. I ate dinner at my Big Sis's house and we watched a movie until 9:30. Then I cleaned my apartment until a friend called me to talk faith. We talked for an hour or so and I realized it was 1130 when I got off the phone. I still had to finish cleaning the apartment since the rents were coming at 10am.

Saturday- 10am: Desserts with Mom. 12-3: Bowling with Dad. Then we drove out to my local church so they could meet some of my friends. Then we went by my great-aunt's house here because we haven't seen her in a while. Banquet then from 6-8. I then spent from 9-12am comforting a friend through a hard time. Then Casey spent the night with me.

Sunday- I got up for church at 9. Cooked lunch and went to choir at 3:45-4:45. Meeting at 6. And now, I'm watching the Saints game.

*deep breath*

I'm still really tired.

I'm supposed to go play soccer tonight at 9:30, but I think I'm gonna pass this week. It's been too much and I need some sleep. Some serious sleep.

Ok. Doctor's appointment. I lost 3lbs (grrr) but my PFTs were up! My FEV1 was 71% (Up from 64%) and another thing... (the FFV? Or something?) was 94% (up from 70%). The peak flow results are up from always around ~510 to 540 EU. It's always good when, as the CF Dr. looks over my results, she smiles. They are letting the slight drop in weight slide this time, but they just don't want to see it continue. She is so proud of me because of the life-choices I'm making and the good head I have sitting on my shoulders. She gave my mother and me high-fives and asked if she could clone me and have a whole clinic of me because "it's refreshing to see CF patients getting out from Mama's wing and still taking care of themselves because THEY want to and they know they NEED to."

So last week was rough, but this week will be better. And thank goodness. I need it.

-Annie

Dr.'s Appt

Not in much of a talking/typing/blogging mood, but I said I would post after my next doctor's appointment with updates:

FEV1 is a little low, but nothing to be alarmed with yet. ~64% of predicted.
The peak flow meter was high though! 505
And my weight was up ~4 1/2 pounds. Almost a third of the way to gaining the freshman 15.

They didn't talk about my PFT results too much because they were excited about the weight and my lower scores aren't yet a red flag. My reasons for the lower FEV1 are: less exercise and exposed to more smoke on a weekly basis.

I've had a really really long day, so hitting the sack pretty soon here.

Night !

Daily Life and Background

Daily life for me is in the middle of readjusting to living in a new city for college, but that doesn't change my CF routine. And why doesn't it change my CF routine? Because that routine is such a small part of my life that it takes a lot to be affected.

Whatever time my alarm goes off (or whenever I wake up), the first thing I do it get my morning treatment ready. I'm on auto-pilot during these times, especially those mornings I get up in the 5 am time frame. I do TOBI on the 28 days on/28 days off regimen so when I'm on TOBI it's Albuterol and TOBI, otherwise it's just Albuterol. After I'm ready for school/church/the day, it's breakfast time!! With breakfast I take those morning meds: 5 Pancrease MT20 Enzymes, Oscal Ultra with 600mg of Calcium (and no Iron), Align probiotic, Vitamin E, Vitamin K (every other day), Mucinex, Milk of Magnesia, Zyrtec, and Zitromax (MWF). Come lunch time, I pop 5 more of those Enzymes. If I'm kinda sick or just feeling in need of some better breathing, I do an extra Albuterol treatment whenever I can fit it in in the afternoon. "After school" hours means another meal! And 5 more Enzymes! Dinner brings more of the same and a few more pills: Oscal Utlra again, Prilosec OTC, Milk of Magnesia, and another Mucinex. Sometime before I go to sleep, I do my evening treatment: Albuterol, Pulmozyme, (TOBI when I'm on it), and ~13 minutes of my Vest on pressure 6 and frequency of 11.

To assist with the weight gain, I also drink ScandiShakes (chocolate!). They are fantastic.

I don't have the specifics on my FEV1 but it's usually in the high 60s low 70s with the %. Next appointment, which is late October, I'll try to remember to write it down. I'm 5'4" and ~119lbs.

Hospitalizations: I stayed in the hospital from the time I was born (Oct. 29) until Dec. 10. During that time, I was diagnosed with CF, treated, and had meconium ileus. Because of that, I had surgery to fix it (and they removed my appendix). Sometime when I was 3, I went back due to obstruction and they reopened the same scar from surgery #1 and fixed it. So now I have a sweet 6-inch scar across my stomach just above my belly button. Swimsuit season used to be a curse for me, but now I wear my scar proudly. 7th grade, I went in for my first IV antibiotics because I was so sick. 4 days in the hospital and 2 weeks total on IVs. This was before PICC lines. So I had a needle in my arm. Fun.... not. I've been back in the hospital 3 more times for antibiotics (with PICC lines): once during the end of 11th grade, during Thanksgiving of senior year, and during March of senior year. The March of senior year was for a short course to prepare me for sinus surgery, my first ever. Post-surgery, the day after I was sent home, I fell ill to pneumonia. So back to the hospital I go for more antibiotics and more Vest usages. Of the combined surgery and pneumonia stays, I was there 12 days. That was too long for me.

Genes: I have the DeltaF508 and some rare one that I can't remember the name of it. They just figured out what it was a few years ago. Last I hear, they considered it a "null gene."

Diet: Anything goes. High calorie, high protein, high sodium, high fat, high carb....

Oh, the reason for the milk of magnesia in my diet is because in 5th grade, I had been waking up every morning with severe pain in my abdomen but no doctor ever found anything wrong. Finally, after drinking barium and having a barium anema done, they learned I have a stricture in my colon (narrowing of the colon) and need M.O.M. to help my digestive process.

Family: I have 2 older brothers. Neither have CF. One has been tested so far and he is not a carrier. My other brother will get checked soon. I'm the only known person in my family to have/have had CF.

Not sure what else to tell you! Any questions? My email is at the top of this blog at all times.

-Andrea