Nov. 14, 2011

Dear readers/glancers/everyone:

I apologize for being absent for about a month and a half. I either never knew what to say or didn't have time to type or just didn't feel like sitting at my computer any longer. I don't even really think I know what to say now, but here I am.

I had my doctor's appointment on Oct. 19. It went alright. My weight was up about 3lbs so that was fantastic. I go in for PFTs and after one blow, the machine breaks. So to be honest, I have no idea what my PFTs are right now. That makes me a little nervous, but since my first try was around my baseline, they didn't fret about numbers and sent me on my way. *whew*.

I think ultimately I will phase the blog out of my life for future employment reasons. I don't want it to negatively affect if/where I get a job. My thoughts and feeling about my health/disease are becoming more solid and detailed and I don't feel like they all need to be posted here. On that same note, I don't feel like my personal life should be available for all to read either, so I don't feel the need to post about it either. It's the same reason my facebook page is more barren than it used to be. Those who need to be informed, or who I feel should be informed, about my life will be. Everyone else will find out through the ever-informative grapevine.

I love my blog, don't get me wrong. I'm actually really proud of it. However, I just don't have the "bug" to keep up with it. I wish I did, but I have so many other things going on that are important to me or are demanding of me that typing up my feelings and thoughts and memories just aren't in the top tier of priorities. I would much rather be spending time with the people who are important to me.

I do have one more thing to write about, and I may be back from time to time, who knows. I wanted to write on the experience of moving in with 3 girls I did not know and trying to slowly introduce them to and explain to them my health "stuff" without being blunt or awkward or weird. It's an art. And while I have no real advice on how I did it, somehow it worked. I think the funniest moment was when one night I was doing the Vest and one of my roommates realized what I was doing. She knocked on my door and I shakily yelled "come in!" While she stood in my doorway she made a comment that made me laugh: "I want to touch you!" She then proceeded to dive onto my bed to feel the Vest and how it shook me. My other roommate then realized what was going on and ran into my room too saying "me too!!" and came to feel the Vest as well. After a few seconds of that, and some time of them begging me to talk while being shaken, they left. Still regularly, that first roommate likes to come in my room while I do the Vest and begs me to talk to her. I think overall my roommates have acclimated to me having multiple machines in my room and a million meds to take quite well, thankfully. I was really nervous at first, but alls well.

It's final week so I may or may not post again soon. I'm really not sure to be honest. We'll see.

-Andrea

First update-

Hospital and IVs are for sure. "When" is the question. Family meeting tonight. I'll let you know when I know when I'm going in for sure.

Thanks for everything dear friends.

-A

30 minutes

30 minutes until my appointment starts. Nerves are getting the best of me.

Here we go.

-A

I had a very frustrating night last night. At 6:45 Saturday morning, I awoke doing my absolute best to ignore "the cough." You know, the cough that means I'm coughing up copious amounts of blood. Maybe, in my delirious state, if I ignore it, it will go away. WRONG. But the real kicker in this situation is that I'm not home. I'm with family in Austin, TX, sleeping on a couch. Waking up scared, sick, and still drowsy, I'm not thinking straight. Not to mention I'm really nauseated from coughing so much/coughing up blood/swallowing more blood because I have no where to spit it out. I start an albuterol and realize that I am going to be sick. Luckily (I think) I wasn't, but and I finally finish my treatment and fall back asleep. However, the most frustrating thing about this situation is that I'm NOT on antibiotics, which in the past has been the only time this hemoptysis has occurred. And I took my Vit. K that day. So now I'm actually clueless as to the cause of this, and that scares me. Now I'm planning ahead though. Along with my nightly glass of water, I'm keeping an empty cup next to me in case this happens again tonight... I really hope not.

My doctor's appointment is in 3 days, and to be perfectly honest, I feel awful. Just terrible. I'm afraid I haven't improved enough to my doctor's satisfaction and I'll be sent to the Hole for the first time in almost 2.5 years. I've actually come to terms with it, really. Worst case, I'm right and I'm not shocked. Best case, I'm wrong and I'm thrilled I don't have to go!! My only real hope is that I'm testing out hypertonic saline for the first time at my appointment so maybe they'll let me slide again, but I think I've slide by long enough. Tuesday will be the test. Obviously, I'll let you know the results.

On a lighter note, I'm getting some good quality time with my family this weekend. I haven't seen this brother/fam since our May crawfish boil so it was long overdue. And my niece is growing so quickly!

OH! I'm done with summer school!!! I couldn't be happier to have two more classes out of the way. And with one of those classes came the idea of a different future career than originally planned, and it's worth looking into! I may be doing grad school instead of PT school! May. I don't know what the future holds yet, obviously, but I like having serious options. We shall see!

My family lately has spent a lot of time watching old home videos. I've been watching videos from when my oldest brother was crawling to when I was around 9 years old and everything in between! Birthdays, holidays, sports, and then just those fun times playing as siblings at the house. It really was fun seeing people/pets who have passed away that I miss dearly and watching the memories I don't have, or times when I wasn't even alive! It really has been fun watching these. Thank goodness for VHS-to-DVD converters!!

I guess I should call it a night here soon. I'll keep you updated on my doctor adventures on Tuesday.

-Andrea

Class in 30

Hi! I have class in 30 minutes but I have enough time to get a post in!

So right now my apartment is just me and one other roommate. We were suppose to have another girl move in on Monday, but she never showed. I guess we scared her off... lol

Summer school ends next Friday! Yay! Then my crucial doctor's appointment the following Tuesday. Cross your fingers people, this one is important.

I'm busy with getting ready for formal recruitment too, on top of school and health. I enjoy it though, so no complaints there. It's just busy! Lots to get done, not enough time it seems.

Going home this weekend for some family time! I can't wait. I love going back home to visit when I'm away.

I have a kines test tomorrow on muscles of the hip joint, knee joint, and ankle joint and then a physics test on Friday on... I'm really not sure what the topic is even called. Stuff. Busy!! Lots of studying, at least 2 tests a week, this week has 3 for 2 classes. And a project due early next week!! Now do you see why I haven't been posting much?!

I got a new laptop!! I forgot to mention that! My old one was toying with me about kicking the bucket so we helped it along with a sale that came to Best Buy! I now have a nice speedy laptop that I love.

The boxer puppy is getting big and strong!! But I love having her around. It's nice to have some canine company.

Ok class in 23 minutes, but I want to do treatment too so adios!

-Andrea

24 days and a funny video!

24 days until my next doctor's appointment?! I feel like I just went! That's kinda how these things work I guess.

My weight is down a little bit, according to the gym scale, due to some stress, but I'm eating lots again and I expect it to jump right back up!

Next week... study study study. 2 tests, 2 quizzes, and a paper due. Oh hi college. I forgot you were there...

Last night my cousin Louis was born!! Another baby in the family, oh boy!! I can't wait to meet him this Easter!

So last week was Greek Week and part of the points your sorority/fraternity gets is from giving blood. On Thursday I went with 4 of my sorority sisters to give blood. I was moral support. I got asked about 10 times by friends who "know" if I was able to give blood. To be honest, I'm not sure. I take an antibiotic MWF for inflammation, but otherwise I don't see why not. This time, I couldn't have given because of my recent tattoo, but other times I've never had a sure answer. When I had asked my mom in the past, we had decided that I shouldn't because 1)some of the meds I'm on, 2)I "donate" plenty to my doctor every year, 3)I have had terrible needle experiences in the past, 4)I just now hit the weight requirement. I've heard some CF patients who give and others who have been turned down, so I haven't tried. The only reason I would is because I'm O+, the universal donor. You can never have enough of my blood! I don't think I'll ever give, but everyone else should! And I'll gladly be there to hold your hand! :]

Time to study. A quick video to make you smile/laugh until you cry (like I did!)
http://comedy.video.yahoo.com/?l=3774740&v=8745428
(Dad, and you thought MY dog has problems!!)
-Annie

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

Annual Blood Draws- my secret weapon

Traditionally, lab work consists of multiple sticks, a few tears, and more than one incompetent phlebotomist (or a trainee). It's a miserable doctor's trip that I dread every winter. But this year was different....

Today was my annual lab work and x-rays. As usual, I've been nervous all day! But, this time I had a secret weapon... my RN. Last time I visited the doctor, I commented on how nervous I was about having my lab work done before the next visit. My RN casually mentioned how good she was at drawing blood and how she would be glad to do it for me.

I have no idea if she was serious, but I took it to heart.

So I called her yesterday asking if she was still up for doing my lab work and if she would be available as soon as the following day. Within an hour, she had gotten everything scheduled for me!

So today, I drove to the Children's Sub-Specialty clinic and meet my RN there. She signed me in, takes me back to a room, and prepares the 7 vials, 2 with foil and one with ice. Before she left to meet me, my other RN warned her how difficult (me and) my veins can be. Luckily, she was up for the challenge.

She prepares my arm as all past nurses have: alcohol wipes to clean it off, rubber tourniquet, and slaps the crook of my arm a few times. She finds a vein (amazingly!!), opens the needle, and slides it in. It was as painless as it could be. She pulls 7 vials of blood in record time, removes the needle, and presses the gauze down. Done.

It was record time and record painlessness. I have NEVER had lab work done so well before. Rarely in one stick and never without difficulty. Until today. I asked my RN if she could possibly do it for me every year! She has a gift.

Finding someone who can pull blood from me without difficult and with little pain is finding a needle in a haystack... and I found her. :]

X-Rays were easy of course as was the sputum culture. Actually, it was all easy today. So unusual! Official doctor's appointment on Tuesday at 9am. As usual, a full report after that.

-Andrea

Doctor's Appointment recap!

PFTs: same as my appointment last month

Weight: same as my appointment last month

Amount of blood I'm coughing up each time it happens: less than the time before

My doctor did not see that any action needed to be taken! That whatever the problem was, it was being fixed already. I will stay on the upped dose of Vit. K until the end of the year.

This is fantastic news!!!! Everybody was very confident in me (including myself) that I would get a great report and ta-da! I did!

Thank you for your concerns/prayers/thoughts everyone. I needed to go in to see my doctor and I'm glad I did.

:]

-Andrea

Birthday weekend

I had a fantastic birthday weekend! It started off with the Sigma Fall Party (on my actual birthday!) where they sang to me and I got a cake! Then I went home the next day and spent the day with friends and family before having to drive back to college that night. For Sunday was initiation for our new girls! They are official members of Sigma Kappa now! What an exciting time for everyone.

Doc appointment on Tuesday. I shall update again after that.

So far no more blood (yay!!) and we'll see how Tuesday goes.

Until then,

-Annie

Hemoptysis update #2

Alright guys, unknown cystic called me out. I've been MIA about my health updates.

I called my clinic and talked to my doctor. She was glad to hear I put myself back on Vit. K because she would have put me back on it too. She upped my dosage to once a day while I'm on the bactrum (and I still have several days left). I got the ultimatum that if, in 24 hours, I was still coughing up blood, I was to drive home and go see my nurse practitioner (because the rest of my clinic was at the conference!) and get checked out. I was to not exercise or do the Vest, or do anything to stimulate coughing, aside from just my normal day-to-day cough. Otherwise, nothing else was changed.

I prayed hard and waiting for the 24 hours to pass: no blood! I think my lungs got the message that bleeding is not ok and stopped. :] I just started back on the Vest last night, since the hemoptysis had stopped, but I'm being cautious with it. I don't want to start it back up again.

My doctor said it was either just the antibiotics or I actually had a bug of some sort. If I had any bug, I'm guessing the bactrum and Cayston took care of it. But really, I think it was just my lack of Vit. K in my body.

Hooray! Coughing up blood is NOT fun. Glad that's over.

Sorry for the late update, Unknown Cystic. I've been insanely busy with Sigma stuff and finishing catching up on homework from when I missed.

-Annie

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

My lungs...

I have never felt pain like this. It's not that it's unbearable, but it's just that it's never happened to me before. I've been absent-mindedly trying to pull my sternum forward with my hands. Literally. I will not think about, but catch myself trying to grab my sternum. I feel like my ribs and my sternum and pressing down on my lungs and it's making it hurt when I cough, swallow, and sometimes breathe. I really don't know what's going on, but since I go to the doctor in a few days, I'm sure they can tell me. This whole thing started this morning. I felt terrible, but I thought maybe it was just the start of a cold. However, I never got a cold. Just this pain in my lungs. NOT COOL.

I'm really becoming more anxious that I'll be sent to The Hole (aka hospital). I can tell I've lost weight because rings don't fit right and my jeans are too loose. And now my cough is getting worse, I got winded walking up one flight of stairs in the cold this evening, and now lung pain. I'm done for. There is no way I'm getting out of this Hole sentence. However, and I say this with emphasis: I DO NOT HAVE TIME RIGHT NOW TO STOP MY LIFE FOR A PICC LINE. I'm on step-show, I have a heart sis and then soon is Big sis/Lil sis week, and Homecoming week is coming up (which is super busy!), and an English midterm, and classes in general that are hard to do outside of the class itself (like anatomy LAB).... and oh yeah, MY 20th BIRTHDAY. I really really can't stop everything right now. The CF Great Strides walk is this weekend and since I'm the one that rallied everyone together I figure I should probably be there to walk it with them. Official verdict will be in 2 days. Pray pray PRAY this is an easy, non-hospitable, fix. Needless to say, I'm freaking out. No tears yet, but they will come. Either when they sentence me to The Hole or when they let me squeak by. I'll cry either way.

I have happier news, and those who are FB friends with me have seen it, but I don't want to dampen that news with my lung pain and fears. So it's another post for another day.

-Annie

My life is always busy....

....and I wouldn't have it any other way! But that's why I'm slow to update. Current status: my hair is wet from my quick shower and I have step-show practice in 25 minutes.

I slept for 15 hours last night. That's insane. My body literally shut off at 7pm last night. I couldn't keep my eyes open. I crawled into bed and the battle was over. Gracious.

Doctor's appointment this Tuesday. *anxious*

Ummm I can't think what else to type at the moment. Super busy with the new Sigmas but really enjoying my time hanging with them and my other sisters.

Morgan (real life fake sister) and her friend Celeste came and toured the campus and then hung out with me after I got out of class. Morgan cooked for me (again). :] Then I passed out. Maybe she drugged me or something....... just kidding.

Ok, I need to get ready for practice.

Bye!

-Annie

ps. Lots of people from Sigma have signed up to be with me for the Great Strides walk this next weekend. :]

A little of this... a little of that...

My mind has been going 1000 different ways at once all week. I still don't have much of anything to post about to take up a whole post, so I'll carry on about a few different things. I'll even number them for pure entertainment.

1. Guys rush is over!! No more late nights cooking food in mass quantities. Thank goodness.
2. I found out I cook a mean sheep dip. Don't google "sheep dip" because what I cooked is not what you will find. What sheep dip is in my family = meaty cheese dip in everyone else's. No one is completely sure where our term for it came, but it still stands.
3. I'm tired of people pointing out that I cough. Thanks, but I'm pretty well aware of it. Mind your own business.
4. Tonight is Sunday Night Soccer again! My legs hurt just thinking about it. It's gonna be fun, but I still won't be able to hang with the guys for very long. I get so winded...
5. Doctor's appointment quickly approaching... really nervous about that. I know I always say I have a bad feeling about the PFT results, but I do this time too. aaaahhhhhhhh!
6. I studied way too long for a test I didn't do nearly as good on as I had hoped. *frustrated*
7. Went back to my college-town church today and was reminded of how much I love it!
8. Great Strides is Oct. 9. This evening at meeting I'm going to get up the courage to ask my sorority to walk it with me. I'm terrified.

That's all for now.

-Annie

Everything huuurrrttsss

Central location of pain ATM: my right shin. Playing soccer at night with no lights with college guys and without shin guards, yet not backing down from any tackle because that's not my style results in a skin colliding VERY hard with a knee or foot or whatever that was. Thought I broke it at first, but apparently I just can't break my own bones (knock on wood!) so thankfully it's just a big ol' bruise. But, because it's never fair, you can't see my big ol' bruise! It's hidden, but hurts like crazy!!

Whoa, rewind. Yeah, that's right. I played soccer tonight. It was so much fun. As one of the few girls playing, I have to earn my respect. Working on it.

Seriously? About 2 weeks until my next doctor appointment? Didn't I just go?! Awesome...

I'm so tired. It's time for bed. Gnight.

I feel terrible.

-Annie

Oh, hang on. Graffiti party was epic. 100000x better than last year, and I loved it last year. I got there around 10:30 (started at 10) and the place was already packed out. I was there from 10:30 until 1 when the cops shut it down for noise. I mean, 800+ people, of course it's going to be noisy. So much fun. I bloodied up my foot though, but it's ok. It started hurting again about an hour into the soccer tonight. Happens. My shin welp still isn't visible but it hurts and it's really hot. Weird. NOW it's time to go to sleep.

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.

Dr. Appointment

Tomorrow is my next doctor appointment. Wish me luck... I'm really nervous, as usual. Mostly because of all the trips I've been on, I have not done as great a job of taking care of myself as I should have. Crossing my fingers that it doesn't come back to bite me with a PICC line and a sentencing to the hospital. We'll see. Report when I return, of course.

I thought for a while and realized that there wasn't much about camp I needed to post here. This is not the place. If you know me IRL, we've probably already talked about it because I have either talked about camp or the VBS I'm working this week with my 20 4-5 year olds.

I'm trying to do my Vest, but having trouble. I feel so sick. I keep having to pause it and let the nausea die down before starting up again. *sigh* 3 more minutes!

The Chili's CF Benefit went well! I know I handed out a lot of coupons (and left some with my server/management) and a lot of people I knew showed up with coupons they printed out. And that was only between 6:00-8:30 at one Chili's!! I can't wait to hear the total. I'll post it, of course!

2 minutes.

I have paper bags to cut (the big ones) and make into vests for the kids at VBS. I'm half way done.

1 minute!

lalalalala..... not sure what else to type. I'm pretty tired, but not ready for 1pm tomorrow.....

Go Vest, go! Hurry!

Aaaaaannnndd... we're done! G'night!

-Annie

Home Home HOME!!

Oh my GOSH. I can't even try to explain how happy I am to be home. I am EXHAUSTED and in PAIN right now, so I will not be giving an official update right now about how camp went and how I'm feeling since I have a doctor's appt in a few days. I will soon though. I'm just so tired. As an overview, camp is over and I'm not doing the second week. I can't. It was a very very very long week. I'm glad I did the camp, it was a great experience, but it's not something I'm capable of doing a second time.

The pain is mostly in my feet from doing a ton of walking and the pain finally hit when I woke up from my nap this afternoon (first thing I did when I got home). My thighs hurt from yoga, dancing, and other physical activities I did this week. My calves hurt from a 1.5 mile run I did (in not bad time). My back/shoulders/neck hurt from the stress of the camp. So right now, I'm trying to recover. I loved the campers I was in charge of, I hope they keep in contact, especially if they need to talk to someone. I made some awesome friends, the other counselors. I don't think I've ever bonded so quickly with a group of people I didn't know. As a group, we bonded so quickly because we had to! That was the only way to keep sane. I'm really going to miss our meetings and after-meeting meetings!

Ok. Time to veg out. I need my brain to shut down again. It's been waaaay too busy this week. This update was a little longer than expected, but hey- it's ok.

-Annie

"Time just flies by, doesn't it?"

I had a very nice lunch with Dr. M., who cared for me when I was only an infant. She is still caring for premies/sick babies today. To sum up my lunch, here are two pictures:

Dr. M. and me THEN (I was out of the hospital by this point, obviously)

and NOW

-Annie