Overdue update

Well hello world!  It's been about two years since I've updated ... shame on me!  However, life has been busy, exciting, and I owe you an update.  Let's see if I can recap all that has happened.

Before I get there though: one of the reasons I stopped blogging was for fear of losing my job due to my "public" notices regarding my health.  That can't be any further from the truth at my job.  Not only is the company I work for supportive and caring, but the office I work in makes sure I am taking care of myself so I can continue to do my job to the best of my ability.  It's also a perk that our campus is 100% non-smoking.  No longer concerned!

Pics at the END of the post, some of them semi-graphic/gross blister pics-- just as a warning!!

HEALTH UPDATES:
Let's get the boring health updates out of the way first.  Then we can move on to life!
-Overall, doing well.

-Hospitalized summer of 2013.  Rashes, blisters, the usual.  I remember my dressing having to be changed multiple times, even in one day. Definitely NOT fun.

-Hospitalized late December of 2014, which of course is always no fun, especially around Christmas time.  Instead of the typical PICC, I got a midline to see if that would prevent the itching/blisters (see HERE for what I'm referencing).  I also prepped ahead of time by working with my father-in-law (what?! I'll get there) who was in contact with a 3M rep and got me samples of different dressings/tapes, etc.  A huge THANK YOU to the rep and 3M because what I did use was much nicer on my skin than what the hospital provides.  They also recently (in the last year or so) changed what PICCs are made out of, but I still went with a Midline.  Result: no major rashes and no blisters at all.  We changed a lot of things from the last visit, but it worked.  I can't say I like the Midline over the PICC though.  My line wouldn't draw blood so they had to set another IV very carefully in that arm to draw levels.  The Midline was much easier to put in though.  I'll have to make a decision for next go-around, whenever that may be.

-My CF doc and primary NP level the clinic.  It wasn't anything major political so everyone parted ways on good terms, but I'm sure going to miss them!  I go back to my clinic in Nov. to meet the interim doctor, so we'll see how that goes.

MAJOR LIFE UPDATES:
This is really what you've been waiting for anyways, right?
-11/9/2013: Andrew proposed to me.  It was as low key and sweet as I could have hoped for.  Long story short, we spent the weekend in our college town with some friends to watch a football game and see our bricks in the Alumni Walkway. Sunday morning before we went back home, we went to a park that we took walks in back in college.  He took me to a bench and proposed.  He was so nervous and it was precious.  Little sister Morgan was there to take pictures, of course, creeping from the bushes.  The whole thing was precious and apparently everyone knew ahead of time except me!  My parents were just waiting for me call at home, watching the clock.  I knew I didn't want the wedding to be far away so we called our wedding planner and set a few temporary dates.  Final date was set a few days later when we found out venue availability: March 29, 2014.

-During the short time between proposal and wedding, it's a blur.  An absolute wedding-planning filled blur.  My mom, who was not working at the time, did so much of the leg-work while I was sitting in the office.  There wasn't a single day that went by that wasn't at least partially dedicated to the wedding.  Without my mom, this wedding would not have been as perfect as it was.

-3/29/14: My wedding day!  It was held In the Round and couldn't have been more beautiful and perfect.  It was exactly what I wanted, dreamed about, and we worked to bring it to life.  So many special people helped pull it off (music, flowers, etc.) and we were surrounded by ~300 friends/family to help us celebrate.  It was wonderful. And most importantly.. I'm married to my best friend and better half.

-Soon after that we had a little one... a FLUFFY ONE! We got a Maltese puppy who we named Zoe
and she is a handful.  She was born 3/13/14 and she is a WILD ONE.  Stubborn, smart, and incredibly agile and athletic, she keeps me on my toes.  Couldn't have asked for a funnier pup with a bigger personality though.. she's a mess!

-Andrew and I lived in a rented townhouse for about a year.  He lived there since Oct 2013 and I moved in after our honeymoon cruise.  On February 27, 2015, we closed on a home!

-Current status: Andrew and a friend are remodeling our hall bathroom.  It's very loud, but I'm going back to work tomorrow (Happy Labor Day!) so I won't be here to listen to it.

RANDOM OTHER UPDATES:
Other things I feel like mentioning
-Andrew shot his finger with a nail gun.  I have a pic (see below) and it was a big deal for a little while.  He's got almost full ROM back now thankfully.  When the cold weather picks back up, we'll see if it still hurts him.

-I'm coaching soccer!  Last year (Oct 14-May 15) I assisted with a U14 girls team through our local soccer club.  They were also RPL (Regional Premier League) so we traveled a good bit.  This year, I'm assisting with a U17 girls team.

-We did a Spartan Race!  It was held in Austin, TX, in early November 2014.  Our team was me, Andrew, both of my brothers, and one of my sis-in-laws.  It was hard work but a lot of fun!  I posted some before/after pics below.

-I went to Vegas in Aug 2013 with little sister Morgan to celebrate her 21st birthday!  Since then she went a grew up on me.  She just completed her Masters Degree in Dublin, Ireland, and has since found a full-time job over there.  I'm incredibly proud, but miss her TONS. She just came back to visit for a bit.. yay!!



I think that's all for today!  Pictures below... sorry for the major gap!

 2013 Hospital Blister pics

 

Weekend of the Proposal!!

 

Spartan Race Nov. 2013

Wedding!!!

Zoe joins the Family!

Midline

Andrew's Injury

New Home/Car

Morgan comes to visit!!

Construction has begun..

 Thanks for catching up with me!

-A

Back to the grind!

Y'all I'm so happy to be back. Actually, that's an understatement. To have my life back means the world to me. While I don't get to really participate in formal recruitment due to missing so much, it's ok because I have my friends and class and my freedom back!! My arm has almost completely healed already, however the blisters left scars and I have the usual "arm button" (like a belly button) from the actual line, which still has a little more healing to go. I'm feeling pretty good too. I'm a little tired from jumping right back into recruitment and school, but I'll have time to come up for air in a few days.

School looks like it's going to murder me this quarter, but I'm really not stressed about it. I really feel like I can handle anything. The summer quarter, flying by so quickly, taught me how to stay focused and work even when I'm really and truly tired of doing homework. That's what is going to get me through this quarter. I'm taking a full load (12 hours for a quarter system; that's 5 classes for me) and it will be chock full of busy work, homework, papers, and tests. But I can do this. That's not to say I won't have moments where I just cry into a kind shoulder about how much I hate school and how tired I am, but I can do this! I've already found that mentality of "school will never end, you have several years left, suck it up and go" so hey! What's another 3-5 years?....

Time to get a little homework done (yes, already) before recruitment this evening!

My "arm button"!

-Annie

PICC Tales- the last full day (Picture heavy)

I promised pictures, and here they are! Time to finish out my PICC tales for this 2 week session.

So since I've been home, I've had my dressing changed twice. Not fun at all. Each dressing change, due to skin complications, sent me to the edge of tears/passing out from pain. One of my stitches has also been bleeding during all this time and that caused a lot of pain when it had to be cleaned too. My home health nurse Bridget changed the dressing on Thursday, because I developed a spot of something underneath my dressing and it needed to be freshened up. By that night and Friday morning, it was completely ruined and needed to be changed again. Turns out my skin had blistered under the dressings and those blisters had popped under dressings #2 and #3 and required a dressing #4 on Friday. Luckily, this last dressing has lasted. My overall rash is completely gone leaving me with rough skin on my arm and my face, so I'm getting the spa treatment tomorrow after my PICC comes out! The only place that still itches is under the dressing where it hasn't had air to heal.

The broncho-spasms have quieted down thankfully and have not been as bad.

One thing I haven't mentioned that some of you know already is that my parents left the country last Saturday and returned this Saturday! They had their 35th wedding anniversary cruise planned out for months and my hospitalization almost made them cancel! Luckily, after lots of discussions, we worked out a deal where I do the IVs myself (see the picture of the extension below) and my sister-in-law and nephew live with me for the week my parents are gone to help get me through. I'm glad my parents didn't cancel their cruise and trust me enough to let me check myself out of the hospital on Monday and take care of my IVs while they were gone. It was a huge step in me being independent (as if I wasn't already lol) and them trusting me with my health even more.

So, I promised you pictures so here they are, with captions and explinations to walk you through kinda what I've been handling and going through.

Warning: I do have pictures of the exposed PICC (well almost exposed) and blistered skin.

My 3rd dressing, ruined thanks to my blisters.

The blistered skin and uncovered PICC (with Biopatch still on)

The 4th and final dressing- layers of folded gauze to protect the skin and the PICC

The line extension- what's made it possible for me to be independent this week!

Two of my meds in the compression balls- Tobra (L) and Fortaz (R)

Zyvox- my third antibiotic which had to be hung on the dreaded IV pole

I thought I got to leave this thing at the hospital.... nope. I did learn how to set up an IV bag and line though, which was pretty cool.

This was the cool device that set the mL/hr rate. Very cool.

Mom made me this cake when I had 3 days left!

And on a completely different note, I got my new Vest today!

I decided not to take pictures of the alcohol prep pads, the saline flushes, and the heprin just because it was pretty standard. But those have been very common sites at my house since I flush before, after, and in between each IV dose, clean with the alcohol prep pads in between everything, and hep lock with heprin after each IV session ends and flush the unused port for that day with saline/heprin each morning and night. Since this PICC had duel ports, I had to switch them out each day and replace my extension every 3 days. So much to remember but once it became routine, it was no big deal. However, I am very tired these days but I think once I get back in my normal day routine (you know, the one that DOESN'T involve IVs) I won't be so tired! My PICC pulling appointment is at 10am tomorrow (Thursday) morning and my facial is that afternoon. I'm almost done!

See you on the other side!

-Andrea

No pictures still...

Shame on me! I haven't gotten around to taking pictures yet. Still adjusting to home life.

7 more days and I'm DONE. I am very ready to have this PICC out... it's the been most frustrating PICC yet. It still hurts a week later and has been bleeding today. My home health nurse is checking on it tomorrow. I think it's just the extra stitch in my arm since they messed up the first time.... ugh.

My rash is still just as itchy as every.

I've also developed a bronco-spasm with one/all of my IVs. Great. So now it's hard to breathe when doing my IVs. Again, most frustrating IV case so far.

Thank you to EVERYONE who has brought me food, dropped by, or called/text to see how I'm doing or if I need anything. Yall are the best and I wouldn't be able to do this without you.

Guys, I'm tired. This is exhausting. I don't remember this being so tiring. I guess that's what happens when you get old, right? Yuck. I guess the 5am-11pm thing isn't helping. Oh yeah, I'm starting treatments 30min before my IVs to help manage/prevent the bronco-spasms.

Still no official ruling on the arm allergy, by the way. I don't think I'll ever really know.

I have guests tomorrow and my IV is almost done so I guess I'll call it a night.

-Andrea

Home IVs- Night #1

Hello all! I think I'm doing well keeping up with the blog while I have all this "spare time"! Tonight was my first night home on IVs in right about 2 1/2 years. Learning curve! Luckily it did all come back pretty easily. The only curve ball is that one IV that has to be hung from a bag on an IV pole. Honestly, I feel like a nurse having to set up an IV bag, but it's not really bad. I was nervous doing it the first time, just since it was new, but my home-health nurse wrote out step-by-step on how to do it and my sister-in-law, who learned it with me this afternoon, was walking through it with me. We had no problems and I feel confident now in doing it tomorrow morning. Luckily though, it's not my 5:30 dose!!

I'm doing treatment now, so late, because I spend most of my IV time in the den being social. I'm ok with staying up late to do treatment and getting up early to do IVs/treatment. I figure if I need to, I can grab a nap during one of my 2 breaks. But I did notice something: my motivation to take care of myself was reignited 10-fold during my hospital stay. I was reminded how WORTH IT it is to take care of myself every day so I don't have to go back to the hospital any time soon. It flew by, honestly, and I didn't suffer *too* much, so it wasn't a horrible experience. However, I wanted nothing more than to redeem myself, go home, and take care of myself. And it's a good thing I'm rejuvenated with this because right now, my medicines consume almost the entirety of my time awake during the day. From 5:30am-11pm (plus treatment if I do it after the IVs like I'm doing tonight). But my dear friends, hear me loud and clear...: IT IS 100% WORTH IT. I want to have my health and have my life and if I have to devote some time and pain and discomfort and frustration to GET more years added to my life, then so be it. I was blessed and cursed with this disease and I have to take the bad with the good, suck it up, and handle it with a smile. One of the best parts of my hospital stay was the many times I got to tell a nurse/doctor/RT/anyone how I haven't been in a hospital in over 2 years. Their reaction was motivational to me. I want it so much more than that. I want to boast about 5 years or 10 years. It sounds crazy, but I believe it's doable. But only if I don't get down about myself again.

****If you are reading this, and you hear me complain or read about me being down about having to take care of myself, please take this last post and rub it in my face until I remember what these 2 weeks felt like. Thanks!****

I'm also upping my Vest time from once a day for 15min to twice a day for 30min. I really don't like the Vest, so I'm proud of myself for this change. It will take some dedication and a little push from those closest to me, but I know I can stay with it. IT'S WORTH IT IN THE LONG RUN.

While in the hospital, BORED, I stumbled upon a website that sends an email to your future self. I don't remember when mine will be delivered, maybe Nov of 2013, but I told myself how much I hated being stuck in the hospital and how I needed to do everything possible to stay out. Maybe I'll get that email at just the right time in my life...

Allergy update: so we're really still not sure what's causing this, but Sarah and I think it might be a combination somehow of the betadine and one of my medicines. We think this because the rash is almost completely only where the betadine was put on my arm, but it only flares/itches when I have IVs flowing. It's so weird. Either way, I have this prescription topical cream that did wonders for the itching this evening.

I think that's all for tonight. I know I still have yet to get pictures up, but I will soon. Just hang tight!

Thanks for reading, as always.
-Andrea

Hospital Days- Monday

Well!! This post is a lot different than I expected it to be, in a good way! I'm writing this from my couch at home!!!!!!!! (That sentence can't have enough exclamation points on the end of it) Y'all, I'm so excited to be home. So so so excited!!!! I now have my dog home from prison (boarded at the vet) and my afternoon dose of my IV drugs completed. I'm all over this, no problem.

We think I'm actually allergic to the betadine and iodine, not the dressing. But to be sure, we're going to keep using this new dressing and no use betadine/iodine anymore. I have some prescription cream that will help with the rash/itching thankfully.

I will get pictures of my medicines now that I'm home. 2 of them are the imploding balls and one is a bag I have to hang on an IV pole. I also have an extension on the line that allows me to do all of the IVs myself.

Ok I'll keep you updated since I'm just going to just be watching Netflix and playing cards with friends/family all week. Pictures coming soon!

-Andrea

Hospital Stay- Saturday

I have developed a skin allergy to the clear dressing for the PICC line. So as of late last night and now still into Saturday, my eyes are puffy and my left arm (where the PICC is) is covered in red itchy bumps. They gave me benadryl last night and today but it's not helping too much. They also changed the dressing to a more cloth mesh dressing instead of the clear adhesive.


Allergy


New dressing

My tobra levels came back and they were too low. So instead of getting a tobramyacin does every 24 hours, I'm getting a dose every 8 hours. So now I have 8 antibiotic doses each day instead of only 6. They are going to check my levels again after 3 more doses and if they are good, I *might* be home by Monday afternoon, Tuesday for sure. If the levels still aren't good, I have to wait another 3 doses to try again. Each retry is two more needle sticks in my arm.

I'm getting a little homesick.

I was a specimen for the med students today. It's a learning hospital. I don't like that. It was a serious blow to my self-esteem today. After talking to Mom some, and getting a nice shower, I feel a little better.

I'm standing and walking as much as possible today. For instance, I'm standing up while typing this post. I'm so sick of being in that hospital bed. I know that it's not helping me get better, so I'm up and about now. Standing for about 10 minutes has already helped me feel like I can get through this feeling good about everything. I'm fighting.

-Andrea

Hospital Days- with some pictures!

Well these last few days sure have been eventful! Let's recap:

Wednesday, August 17, 2011
I was admitted on Wednesday and immediately had a peripheral IV put in my left arm. I was later started on the doses of my 3 antibiotics: Tobramyacin, Zyvox, and Fortaz (I'm mostly sure on these spellings!!). They are taken every 24 hours, 12 hours, and 8 hours, respectively. (6am, 8am, 2pm, 6pm, 8pm and 10pm) Oh boy am I going to be busy when I get home taking care of all of this! Other than getting moved in and settled, Wednesday was pretty quiet. Oh, I did have a chest X-ray taken too. I mentioned before that one major difference is the care that the RTs take with each patient doing treatment and hand CPT 3 times a day. So I spent my evening treatment being tag-teamed by two RTs beating me, and while I'm not yet again really used to hand CPT, it went well.


(The peripheral)

Thursday, August 18, 2011
Rise and shine at 4am thanks to a youngin' across the hall very unhappy about something. Did I mention I love being on the ped's floor?? No I really do, but that's the one downside... screaming babies!! Oh well. It's a small price to pay. I slept poorly until 5:30 when a familiar face walks in my door for morning CPT! Remember Gaelin, my friend from middle school, high school, and my freshman year roommate? Her brother-in-law is an RT up at this hospital so he came to visit/beat on me! It was quite a nice surprise and I was glad to see him. Around 9am, I was asked to move rooms! Turns out I was placed in the only available room that day and it has special equipment, so they like to keep that room open when possible. Mom had to work out of town on Thursday, so I thought I was going to be alone most of the day... boy was I wrong! Visitor after visitor after visitor! It was a ton of fun. Bad part of the day? Getting my PICC placed. It was so much simpler at the other hospital that I was spoiled! Here, I was a wreck. And post-PICC placement, I had to have a chest X-Ray again to check the placement. I was sick in that room due to stress, anxiety from the PICC procedure, and not eating enough that day. Luckily, I had one of my best friends waiting for me in my room when I got back. The right visitor will do wonders.... I also had a 3rd year med student drop by, an old friend too! He just happened to be doing his ped's rotation this week.
We were hoping that by my evening antibiotic doses, the radiology department would have been able to review my x-rays and I could have used the PICC, but the server was down (ahh, the digital age...) and so I had to use the peripheral again. It hurt, a lot. My veins were screaming, but with a little help from a friend, I made it through another dose. The late evening brought good news of using the PICC, so they flushed it and pulled my peripheral (YES!). I slept much better last night.


(the PICC)


Friday, August 19, 2011
I was awakened at 5:30 again by my same friend RT for my morning treatment. 6am meant antibiotics, but since I was using the PICC, it didn't hurt very much. Today has been very lazy and quiet, I've actually enjoyed it. After mom and I chatted with the case worker about getting home IVs set up, she went to work. I've spent the afternoon/early evening so far catching up on TV shows, writing this post (which is probably as long as my last several posts put together!), and veggin' out until my aunt gets here with my Buffalo Wild Wings dinner! No hospital food for me!!

My PICC pull date is set for Sept. 1 assuming my Tobra levels are good. They took the trough level at 2 and the peak level will be taken at 9. Prayers for the right numbers so I can go home on Monday! I miss my puppy and my house, even though I'll do there what I've been doing here: nothing. I'd rather do nothing at my house than at a hospital. Although I will say, as hospital experiences have gone, this one has been pretty smooth, and I'm so grateful.

Have any of you had the PICC with the two ports before? What's the point? Everyone I've asked just tells me "It's the exact same as the single one" so why the extra hardware? Just curious.

I'll keep you updated!
-Andrea

"When"

The "when" of my hospitalization has been decided: today! I'm glad to finally have a plan in place, it helps with my stress levels. Also, due to some already set plans, I will be more in charge of my home IVs than ever before. I know I can do this, so I'm not nervous.

I'm going to a different hospital than ever before, and I don't think this one has wifi (booo...) so plan A is not to take my computer with me. If they do have wifi, then Mom will bring it later. Either way, it's time to restart my "No IVs" stats from the 2 1/2 years I went without back to zero. I had a good run and planning this next run to be even longer than the last.

So if there is no wifi in my room, farewell for several days! If not, I'll post tonight probably!

Keep me in your thoughts/prayers if you don't mind. I need all the help I can get!

-Annie

Turkey Day!

Happy Thanksgiving!! Last year, I had a PICC line on Thanksgiving so I didn't eat much at all. The antibiotics just made me feel full and not so great. But this year, I'm PICC free and ready to shovel food!! This year, Thanksgiving Lunch will be eaten with my parents, the middle brother, his wife, new baby Carter!, and my grandmother. My aunt/uncle and the boyfriend will be joining later for cards and games. We may have other family members drop by, but these are the people we know for sure are coming.

Oh, I guess I should mention that my puppy and my brother's puppy are coming over to play with each other. And they're not really little puppies anymore (Coach is over a year and McKenzy is almost a year) but they will always be puppies to me. :]

So I've been withholding information from the blog for people's privacy, but I'm ready to shout it out: I'M GOING TO BE AN AUNT AGAIN!!! My other brother's wife is now pregnant (only a month behind her sister in the pregnancy!) and they told our family this past Saturday. Obviously, I'm really excited. Being an aunt is the fun part. Except when you have to fight "grandma" for baby time. Like yesterday! I was holding Carter and my mom so desperately wanted to hold him!! But he was content and sleeping and I knew if we moved him, he would cry. I didn't want that, so I held him until he actually needed to have his warm clothes on before they left. My argument was that she will have plenty more time to spend with him than me, since I'm about to go back to college. Let's see how many times I can pull that card!

The boyfriend came back yesterday from visiting his sister. It was really great to see him. I really did miss him! He dropped by my house for a minute (which is all I asked for) before going all the way home so I could see him. I ended up going to his house later, which was a lot of fun. I hadn't seen his family in a while since I don't go over there as often anymore. It was nice to see them all again.

Tomorrow is Black Friday, the craziest shopping day of the year. What do I do? Hide. I don't leave my house. Tomorrow will be my day to sit and study for the Chem 100 credit exam. I'll probably go out on Saturday to do some Christmas shopping, but not Friday.... *shivers*

Lunch is an hour and a half away!!! Time to get ready for the day. :]

Don't forget what you're thankful for!!

-Annie

HOME! HOME!

Yes! Finally, a blog post from my own desk! I'm home!!!

As far as the medical junk goes, PFTs were down, weight is down, but pneumonia is starting to clear up. BUT I still got to have my PICC line pulled so my arm is free once again. But man, it HURT to have this one pulled. It didn't help that while my sweet nurse was trying to cut my stitches, she had someone standing over her saying "oh no no. Not like that!" That did not help anything. However, once she cut both stictches, the only pain left was just the "after-throb."

Glad to be home,
Andrea

Hello, setback.

QUOTE FROM LAST BLOG ENTRY:
"Parents and doctors both worried that I would catch pneumonia from just lying there all the time."

Dun dun duuuuuuuuun. Is that foreshadowing or WHAT? Guess who did end up getting pneumonia? Yep. Me.

Last Friday, the day after posting about how great I was feeling, seriously, 12 hours after I had posted that, I returned all the food I had eaten on Thursday to the porcelain shrine. It was a bad, bad day.

I spent from 9..ish until 4ish in the bed, crying, miserable, nauseated (or throwing up) with no relief. We even got some medicine for nausea, but it didn't work. Around 4 we realized I needed help so my parents rushed me up to the ER at Schumpert, where they had assured us there would be no wait. They lied. I sat in a chair for a good 15 or 20 minutes feeling like I was about to die. I was also denied at the children's ER, which had no wait. Once I was finally seen, it was discovered they my heart rate was 171, my blood pressure on the floor, I was EXTREMELY dehydrated, and I had a fever. Hmmm... thanks for making me sit and wait. I get wheelchaired to the triage where they were surprised to see I had a PICC line. "I was here 2 days ago, on peds." The nurses were glad to not have to try to find a vein on me!

After a few nurses come by and they got some fluids running through me, we finally see a familiar face: a guy we know from church is one of the ER doctors. He was as shocked as we were.

Five hours later, we are admitted into a hospital room. I had gotten an armband that said "511" so I knew I was going to be back on the pediatric floor again. YES. As I'm being wheeled away, someone asked what room I was going to. "511" "Oh no you're not. You're too old. 688 for you." What?! 2 days later I'm too old for the pedatric floor where I just WAS?? So I can't get continual care from the people who just took care of me? K.........

6th floor medical tower is no where near as comforting as the peds floor. But I guess that's more incentive to NOT return.... lol

As a side-note, a nurse on the peds floor is also the mom of a teammate, and one of my biggest fans. She printed out the "policy" on age limits for the peds floor. I am allowed to stay through my "entire eighteenth year." So technically, I really should have been on peds again..... but "change is hard, isn't it?" (rude receptionist told that to my mom on this floor)

I've enjoyed my company ranging from family members, to friends, to 4 grown men in tiaras and tulle skirts rapping to me, one of whom I'm proud to say is my father. :]

I just went and did PFTs (pulmonary function tests) and if they are stable still, and my chest X-ray shows improvement, I'm having my PICC line pulled and being shipped home tomorrow morning!!!! I hope that's the case because I'm really, really, REALLY tired of being here. Sad to say, but I'd rather be at school.

That's all for now. Signing off.

Recovery

Wow. Surgery Friday and here it is the Thursday after. Seeing as I slept most of this week away, I don't remember much. And what I do remember, mostly isn't pleasant. Thursday night, my arm was hurting from the PICC line so I took some Dilaudid. Little did I know I was allergic. Worst night of my life but glad I found out then instead of after surgery when they would have given me a much greater dose!!

Up until the last day or so, I've been dru.gged up on pain meds and nausea meds trying to manage both. I hardly ate, moved, or enjoyed my day. Basically, recovery was 100000x harder than I thought it would be. Because of all the meds, I didn't eat. Because I didn't eat, I felt sick. Because I felt sick, I wouldn't move nor eat. Etc etc etc. Parents and doctors both worried that I would catch pneumonia from just lying there all the time. But I would be very dizzy when I sat up, so I felt discouraged to move. It was a HORRIBLE recovery filled with pain, sickness, dizziness, overheating, and night sweats. One evening I even spiked a fever but sweated it out by the next hour.

But now I'm home after a week in the hospital. Here, I'm more inclined to walk around and eat, which in-turn quickens my recovery. I go back to the doctor on Monday to get the PICC taken out and then for my surgeon to "finish the job"...... Oh boy.

So far, the only difference I've noticed is my lack of tolerance for spicy foods. :[ That was my claim to fame! I won't feel 100% better until I go see my ENT again on Monday. I'll let ya know how that one goes...

Today I ate my first FULL meal since last Thursday (before surgery). YAY!

I'll keep updating as exciting things happen.

-Andrea

Life as of Late

I got a "complaint" from a fellow blogger that I don't update enough! Whoops!

All I've been blogging about as of late has been soccer, seeing as my life was almost completely overtaken by it (no complaints there). However that has ended and life has moved on. But to what?

School is obviously still a major part of my daily life. Not my choice, but certainly still there. BUT! The countdown is counting down and the days are numbered. I think the school day count is 33 or something. YEAAHH!!!

But however my life is kinda stressing me out right now. Next Wednesday I go see my ENT. Next Thursday I go into the hospital and get a PICC line. Next Friday I have sinus surgery. Not fun. I've never done it before but I've talked to a lot of people, including my physician, and I feel very comfortable with the whole thing. Well, as comfortable as someone can get about a surgery that's a week away. We'll see closer to time how I'm holding up.

In the Biology 2 class tomorrow (Friday) I get to be show-and-tell. I get to stand at the front of the class and basically explain what life is REALLY like with CF. More than what the books can teach. We'll see how that goes. I have no presentation prepared. I'm just going to wing it. Haha! This could be really funny.

Oh I went to the zoo the other day with the boyfriend. We had fun. :] (see picture at top with my used-to-be-rainbow-but-is-now-brown snowcone!)

Ok. That's my update (BETSY... lol)

-Andrea

So far, so good

So, like I said before, I got the line out Monday. How's life been since?

FAN-freaking-TASTIC. Except for making up loads of school work (*sigh*), I'm glad to be back playing soccer, back in school, and back in my life! My arm is healing up nicely and I'm feeling somewhat better. Somewhat.

Nothing else really to report. Just glad to be back!!

-Andrea

PICC free!

This is probably the best feeling in the world. I love being PICC free! My skin is ra.w and tired, but I don't care!! And I have a gaping hole in my arm from the line itself... it's pretty gross too. I'm really proud of it though! Battle scars from my fight with CF!

I'm back playing soccer and feeling pretty good. They told me at clinic today that these antibiotics are sometimes appetite suppressants. So I lost a few pounds. In 2 weeks, I lost almost 2 pounds. I think there are a million people on this planet who wish they could, but I don't want to! As easily as people gain weight, I lose it. But in reverse, as hard as it is for people to lose weight, that's how hard it is for me to gain weight! So it goes.

That's my update! PICC free and lovin' it.

LEAH- you're next. :]

-Andrea

Thanksgiving and such

Piles and piles of food: turkey, dressing, cranberry sauce, pumpkin pie, peas, rolls, green bean casserole, corn, sweet tea and I don't even remember what else! Food galore! And yet, I ate almost nothing.

The worst part of Thanksgiving is when you can't have any. My appetite went out the door that day. I munched on some food, forced more food down my throat, and told my mom that if I ate anymore, I would be sick. And just like that, my Thanksgiving meal was over. I was more frustrated than you can imagine. Thankfully, I still got to enjoy the time being with my family, which is ultimately more important than the food.

Since Wednesday, I have not left the house. Is it just me or are the rooms getting smaller??

But now! I'm leaving to go to Joanne's to buy fabric. :] Yay!

-Andrea

PICC vs. Pliers

Wow. Scary and funny at the same time. So at the end of the PICC line is a screw-like apparatus where a syringe or antibiotic dispenser are able to screw on to it. This is a normal thing. What's NOT normal is not being able to UNSCREW it after the antibiotic dosage is over... and that's what just happened here.

My mom hooked on the antibiotic tubing at 10:30. 11:30 rolls around and the antibiotic is done. I'm sitting in the spare bedroom working an online crossword puzzle. "Mom, what's a 3-letter word for 'Ill-mannered irresponsible man'?" "'Man'?" "Tried it, no. Guess again..." While I was thinking, she's trying to unhook the tubing from my arm, without much luck. This is not really that unusual seeing as my mom has arthritis troubles and has sore hands and wrists sometimes. So I try. Nope. Hmm... we keep trying but still no luck. Time to wake the man of the family, but even HE can't unscrew it. "That means it's time to get out the pliers." EXCUSE ME?! Pliers twisting on a piece of plastic that is attached to tubing going into my artery? Haha good one Dad....."

Not a joke. He comes back with those shiny, metal pliers and my eyes widen. I foresaw horrific images of awful tugs and my PICC line coming out. But Dad was very careful and got it off successfully. WHEW....

So that was my excitement that I could have gone without. And that explains my adrenaline rush and the reason I'm still up at 12:11 on Thanksgiving morning.

Yum Turkey-Day! Let's hope I have an appetite later today and can actually eat something. I do love Thanksgiving...

But for now, sleep.

-Andrea

P.S.: The word on the crossword puzzle was "cad." *shrugs*

Oh the Irony

I go into the hospital feeling fine. I leave feeling like crap. Ooooh the irony. Is this something I picked up from the hospital? There were very ill children in the rooms surrounding me. All it took was one germ crawling across the hall, under my door, and onto ANYTHING that I drank, ate, or took via IVs. Or is this something I picked up from the boyfriend? He's been sick too. Or did he get it from me? Or did HE get it from the hospital when he visited me? OR is it my sinus infection gone bad? The world may never know.

Regardless, the end result: I'm sick. How can someone on IV antibiotics get sick?? Not sure, but I did. lol. Naturally. :P

Stuffy nose, hacky and chesty cough, tired, and dizzy on occasions. Everyone says that sleep is the key but with these IVs, sleep is still inevitable. Sure, I get more sleep at home than I did in the hospital, seeing as no one is checking my vitals every hour, but sleep is still interrupted. And I'm REALLY tired of being couped up in the house, which isn't helping anything. Getting anxious. asdkjhgakldkjf.

I know it sounds like I'm complaining, but I'm not trying to. More of just commenting to myself on my blog. Keeping a personal record of my health and noting the inevitability and irony of my staying sick until my IV comes out. But, to make things EVEN more interesting, if my PFTs are worse than before I got the PICC put in, then the PICC stays in. That would not be optimum in my personal opinion. We shall see.

We shall see.

-Andrea

This was the PICC when I had it put in. It look a little different now but the same idea.

Reason #581 I'm not going to Med School

So I've got the PICC line in and they have to change the dressing (bandages) on it every week. Today was the day. Did I mention the tape is *extremely* painful to take off? And it makes me really nervous when the nurse peels it back because it's so close to the LINE GOING INTO MY ARTERY? I thought I was going to be sick today when she changed it. Pain + fear = revisiting lunch. This nurse is fantastic, don't get me wrong, but my stomach has been less than iron these past few days. Luckily, lunch kept it's natural route south and I was ok. The same thing happened sophomore year when having my annual blo.od work done. They pull an INSANE amount of blo.od from my arm. Plus it hurts and I'm anxious... and I remember that there were 3 prisoners in the room because one of them was pregnant... that didn't help my situation.

Anyway. Med school. Not for me. Noooo siree. If I could even make it through med school, the only field I would have any desire to work in, I can't. So no thanks!

However, I do have VERY preliminary, yet nevertheless exciting news. I'm in contact with the director of fundraising in the East Texas/NW LA for the CF foundation and I'm coordinating a meet with her to talk about what the Magnet soccer teams can do to raise money for research! I'm *BEYOND* excited. I had always wanted to do something but always found options out of my reach. Then dearest Alissa told me that she wants to help out and we're going to get the soccer team, and school clubs, to organize and work a walk/run or something. I can't wait to see what this team can do, on and off the field!!! :]

That's the brief update for today.

-Andrea