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

I spoke too soon.. Vertex update

http://www.xconomy.com/boston/2013/04/18/vertex-pharmaceuticals-booms-on-cystic-fibrosis-combo-drug-study/

This is a great article.  It explains things relatively simply (maybe only mildly because I understand the lingo) and touches on everything from the stock jump to the study results.

I'm pleased. Yes, just pleased.  I'm petrified.  But ecstatic.

Did you watch Zero Dark Thirty?  At the end of the movie, when the red haired lady was in the plane and had accomplished her goal that it took most of her career to do, what did she do?  She cried.  The thought running through her head is "Now what?"  That's the best way to describe finding a cure.  Now what?  Everyone is always saying "be excited! Live your life! You have a cure, or something so close to it!" And that's more amazing than I could ever describe in words, but I've literally wanted a cure since I was old enough to understand what was going on... so then what?  It's ok if you don't get it.  You don't have to.  But I do.

However don't mistake this feeling for disappointment or unhappiness because it is the total opposite.  I couldn't be happier.  But I'm terrified.  Just know that.

-A

Long time, I see.

In reference to the post below, I still haven't seen the results.  It's been almost a year.  I still remember that day-- I curled up on the floor of my apartment and cried.  I should have remembered that science takes forever.  Not their fault, I understand that.  I just should have known to not count those chickens just yet.

Hello world! I don't post much for a few reasons but primarily because I grew tired of it.  Occasionally, like today, I'll decide the posting isn't sure a tough thing to do.  It's nice to be heard every so often.  I do have a second "blog" for my personal thoughts and feelings. Things that don't need to be shared with the world around me.

I also don't post as often because a lot has changed in 10 months (shocking, right??).  I moved home in June of 2012 and finished out college commuting back to my college town.  I also took a few classes from home and held an internship at a local gym for the final two quarters of college.  Then, on Nov. 17, 2012, I graduated college early by two quarters.  *high fives all around*  Backing that time-table up about a month, I also started a "big girl job" in mid-October.  After I graduated, I went on a graduation cruise with my mom, and began working full time (8-5, M-F) the Monday I came back from my cruise.  Very exciting, very busy.

I also shifted away from the blogging world with my new job because, like a fellow blogger (Unknown Cystic), I don't want to put my career in jeopardy just because of my health.  The internet is an incredible thing, but has the potential to ruin lives.

I also recently turned down the chance to be a local "face of CF" as a part of a really great fundraiser locally.  I've supported and attended the gala they host when I'm able to, but this would have made me the key speaker and face in the media.  I was all for it until I was employed.  I'm sorry, but I just can't.  I was a recent speaker with my mom on the Mother/Daughter Perspective of CF for local CF families hosted by my clinic.  It was a great event and we had fun doing it.  It's on YouTube.

Speaking of YouTube, my work did a Harlem Shake video.  We're the first in our industry to do one and the other companies got called out by observers.  It was tons of fun.

Ironically, after noting that I would like to keep my job despite my genes, I'm home sick today.  It's the first full day I've taken off for feeling UGH.  Remember all that belly pain I've had since late elementary school? It still haunts me.  I actually had a recent colonoscopy to see what was wrong.  Verdict? "You have a normal colon. Nothing is wrong with you."  WRONG.  Just because we can't see or determine the problem does not mean nothing is wrong.  The highly respected doctor who performed the colonoscopy suggested it might be my diet.  I mentioned this to my CF doctor who scoffed.  "Doubtful."  Still back on square one, in pain and still "nothing wrong."

For the record, I cried before my colonoscopy many times.  Was I afraid? Was I in a lot of pain? No and no. I was HUNGRY.  I was waiting for them to put me to sleep and tears are running down my cheeks.  The nurses were great and worked to console me letting me know that there is nothing to fear and it will all be over soon.  I just looked at them through my teary eyes and said "I'm not afraid, I'm hungry.  I just really want to eat."  I'm not sure they quite knew what to do with me.

Think about it! I couldn't eat for 24 hours.  ME.  Or drink Dr. Pepper.  ME!! I had a lot of juices to choke down the solution to "clear me out."  I got so physically sick of sweet drinks that I started sucking on the cajun sweet pickles that my mom makes at Christmas time for some spice.  Sad, I know.

Recent doctor visit revealed that I would benefit from some IV antibiotics, but it wasn't an emergency.  I made a deal that she let me wait 6 weeks and be reevaluated because I was beginning playing soccer again and running once more.  I was making a serious effort to improve my cardiorespiratory health and I wanted to see if that would help before we made any decision to send me to the hospital.  I've been running every day since.

My running partner, aka the boyfriend, has been great.  When our work schedules allow us to run together, he meets me at the gym closest to me and we run.  He gives me the push to keep going without pushing me to a breaking point.  I've also lost several pounds over the last few months and he's declared that I'm going to eat as much as he does, if not more.  We'll see how that works out!

Speaking of the boyfriend, all is well in that department.  ("well" is the understatement of the century, actually.)  We're extremely happy and things just make sense.  It's nice when your best friend is also your boyfriend. :)

Speaking of friends, one of them (aka Emmons) is turning 21 in August and someone in her family got the great idea to have a serious celebration... IN VEGAS.  Come late August I will be flying out with her family for a 21st birthday party in Sin City.  I'm sure there's nothing that can go wrong.. haha!

Two of my other close friends are getting married in November.. on the same day... in different cities! Bummer! I'm very excited for them both and can't wait to celebrate with them!

On that note, I think that's all the updates I've got so far.  Well, I'm sure there are plenty more, but that's all I've got for today. One more reason I don't blog, before I forget: I spend all day at work at a computer.  I really don't want to get on my home computer once I leave.  It's just not appealing to me.

Ciao.

VX-809

"Dear Friend,

We have encouraging news to share with you. This morning, Vertex Pharmaceuticals announced promising interim results from a Phase 2 combination study of Kalydeco™ and a potential CF drug called VX-809. 

Both therapies are designed to treat the underlying cause of CF and were tested in people who have the most common CF mutation, Delta F508. People with two copies of the Delta F508 mutation who took both drugs in the Phase 2 study showed significant improvements in lung function. 

The trial is ongoing and complete results, including data from patients with one copy of the Delta F508 mutation (heterozygous Delta F508), are expected this summer. 

These interim findings are important because they show that our approach to target the underlying cause of CF is on the right track. Vertex plans to begin a pivotal trial of Kalydeco and VX-809 in people with two copies of the Delta F508 mutation, pending final study results.

We are pleased that Vertex is accelerating its plans for a pivotal study of the combination treatment in those with two copies of Delta F508. The CF Foundation played a key role in the development of Kalydeco and VX-809, providing significant scientific, clinical and financial support. 

We still have much to do, but today’s news is a significant step in our work to defeat cystic fibrosis.  

We will not rest until we find a cure.

Thank you for all you do.
Sincerely,
Robert J. Beall, Ph.D."

The part in red APPLIES TO ME.  

The rest of it applies to over 90% of CF patients.

The CF world holds its breath... I know I am.  

This could be it.

The "cure" of my lifetime.  

I'm nauseated.

I'm excited.

I'm terrified.

I'm speechless.

If results are very positive, I will cry.  If results are not as good as they had hoped, then so be it.  Life goes on as expected.  But if this thing is for real and I get to be put on it, I will cry.  Probably every day.  For a long time.  Oh look, I'm crying now.  Most of you will never go through this experience.  Where the thing you've wanted more than anything else in the entire world was never even in sight and suddenly it may not be far away at all... and then may be soon in my hand for me to take in pill form.... I don't know what I'll do if/when the results are good and I have my prescription in hand.  I will fall on the floor crying, praising the Lord for this miracle.  

This might actually happen.

Soon.

Hold your breath...

-Andrea

Graduation

Graduation date: Nov. 17.  28 weeks and 6 days away.  (After this quarter) 5 classes, 1 practicum, and 1 internship away.  And not a clue of what I'll be doing Nov. 18 and on.

It's gonna be a bumpy ride these next two quarters.  And the end of this quarter.  Time to hold on tight because, like last quarter, it's eat or be eaten.

Moving home, sorta, starting late May.  Commuting a lot and living in my college town some too until my lease expires on July 1.  Lots to do... lots to do....

*deep breath*
Here we go.