Saturday, December 31, 2011

2011: A Year of Reflection & Motivation

I cannot believe that I've had this blog for an entire year now! 2011 has definitely flown by this year - 72 (now 73) posts later, I've learned so much about myself in this year of writing, it has been amazing.

There have been some ups: Helping organize the first annual Great Strides in our town (and huge support from my family, friends, co-workers in raising money), our new apartment, the amazing development of Kalydeco!, we adopted our cat (Archie), celebrating our first wedding anniversary, becoming an aunt for the second time, I became an organ donor, and of course the beginning of a new me: 100% compliance since July 31st (153 days) and the addition of my exercise routine = increased PFTs!

And some downs: Several interviews but no teaching job, lots of doubts/worry about if having a child is the right thing for us - baby w/ CF or not?, and crappy/smoking/nasty neighbors.

But the 'ups' have definitely out-weighed the downs this year, and I cannot complain about that one bit. This has been a wonderful year of reflection and motivation for me and I appreciate all of you reading and commenting on my posts. I can't promise another 70-something posts next year, but I'll try my best. :-)

Goals for 2012:

  • Get my FEV1 into the 90s and keep it there!
  • Complete a 5K
  • Keep forging ahead with our pregnancy discussions                                                                       and maybe become a mommy
  • Find a full-time teaching position
  • Stay as happy and healthy as I am now! :-)

Friday, December 30, 2011

Donate Life

*Note: This post only expresses the views of the author - you may have a different opinion and the author is no way trying to tell you you're wrong - everyone is entitled to their own opinion.*

This is not a topic that I thought I'd be writing about on here, at least not yet, but I was on CysticLife this morning and someone posted how they recently registered to be an organ donor. It made me stop and think about if I checked that little box when I renewed my drivers license? I don't think I did.

http://www.donatelifeillinois.org/
Personally, I think organ donation is a wonderful gift - it's the gift of life! I mean, what are you going to do with your organs and tissues after you die, really?! Why don't you give them to someone who can use them??

In high school, I met someone named Joe who had Cystic Fibrosis. He wasn't always the healthiest, but he was one of the funniest, most positive people I have ever met. When I told my mom about him, she kind of looked at me funny, asked me what his last name was, and when I told her, she knew who he was! Apparently our parents had met when we were both little kids at some CF conference thing, but they didn't keep in touch. When I was in 8th grade my family moved to a new town, and Joe and I ended up going to the same high school. Crazy! Anyway, we became friends, even though we knew we weren't really supposed to be within three feet of each other (CF rule so that we don't spread each others germs/bacteria), we ignored it. He was in and out of the hospital a lot throughout high school and when we graduated, he didn't go off to college because of his health.
Summer 2005 - we were 17 here

We kept in touch when I went to college and in September of 2007, Joe had a double lung transplant. By the time he got his new lungs, one of his lungs was 75% unusable, the other was 50%, and he was on 8 liters of oxygen a day. This double lung transplant came at the perfect time in his life and gave him the chance to live again! Once he recovered, he was like a new person and he was able to walk his dog, Sophie, again (he loved that dog!)! The next fall, Joe went to college in Chicago for video game design. Unfortunately, him and I didn't keep in contact as much as I would have liked. In May of 2010, Joe developed some sort of cancer from his transplant, his body rejected his new lungs, and Joe passed away.

It came as a huge shock to me because I thought he had been doing so well and I didn't talk to him as much as we used to because we were both so busy. He was the first person I personally knew with CF (besides my distant cousins who I hardly ever saw) and it hit me really hard when he was gone. I couldn't believe that someone I went to high school with wasn't alive anymore, he was just too young. But because of his double lung transplant, he was able to get another two and a half years with his family and friends, and be able to go to college and live a wonderful life. If he wasn't given that second chance, he could have died right after graduating high school.

I'll admit, I didn't sign up to be an organ donor right then, because honestly I thought my organs couldn't be used because of my CF, but it's made me much more aware of organ donation. Obviously, they're not going to use my lungs, but that's not all people need. They use 'liver, heart, lungs, kidneys, pancreas, small intestines, corneas, bones, saphenous and femoral veins, heart valves and skin'. (http://www.donatelifeillinois.org/donatelife/faq.htm).

I know that this is a personal choice/opinion, but really, what are you going to do with you intestines or heart valves when you die?? You could give someone else the chance to live for another two and a half years, or many more years with their families, kids, spouses, friends, etc. by checking that little box when you renew your license, or registering through your state. Who knows, one day I could be in Joe's shoes where my lungs are barely functioning and I'm just waiting for the right set of lungs to come around to extend my life. I understand that it takes a person to die to donate their organs, and that's not always pleasant to think about, but I feel like it's such an amazing last gift to give someone so that they can live. I am proud to say that I am now officially an organ donor and that I really hope I can impact someone's life when that days comes when my life is over.


Are you an organ donor??

"Congratulations on your decision to help save lives!" - from the Donate Life website after I registered today! :-)

Tuesday, December 27, 2011

Go Me, again! (And Other Things)

I'm sorry, but I have to brag again about my awesome trip to the gym today. I stalled for as long as I could this morning to go because I hadn't been there since last Wednesday, so I thought it was going to be really tough. I stuck to my normal routine - run a mile on the treadmill, then do 10-15 minutes on the elliptical - except this time I ran a mile and a half on the treadmill without stopping!! I know this may not seem like much, but on November 15th, I ran a whole mile straight without stopping, and since then, I've been making myself run a mile each time, but lately I've been wanting to go farther but always chickened out and stopped at exactly a mile.

Today the first 1/2 mile was kind of rough and I almost went to a walk early, but I pushed myself, a mile came and went and my legs weren't even hurting and I was breathing pretty well. I was at about 12:00 minutes of running at this point, so I set a goal to keep running while I finished the song "If I Die Young" by The Band Perry. Well, that song finished and I was still going! I was at about 1.35 miles, so I pushed myself to keep going to 1.5 miles and I did it! (It took me about 17 minutes.) Now that I know I can do it, that will definitely be my goal each time I go back to the gym! My ultimate goal is to be able to participate in a 5K (3.1 miles) sometime in the spring, summer, and/or fall - whenever there's a local one. Today I completed about half of a 5K on the treadmill, so I know that if I keep going, I can do it!

In other news, I am at 149 days of compliance with my Vest and nebs! It was hard to keep up with all of my treatments this weekend with the holidays and so much traveling, but I did it. From Thursday morning to Sunday night, Tim and I put over 700 miles on my car, but it was all very well worth it. We literally drove the entire state of Illinois, from near St. Louis to Chicago but we were able to visit so much family. Tim's oldest sister had her first baby (our second nephew), Isaac, on December 13th, so we were able to visit them on Friday, when he was only 10 days old - adorable!! 






We were also able to spend a lot of time with Tim's other sister, her husband and their son who's now a year and a half old already - also very adorable and funny! We saw everyone on Tim's side of the family Friday and Saturday, then on Sunday (Christmas Day) we traveled up to my parents house where we opened gifts with my parents and two brothers. Then we spent some time with our good friend Chris and his family for a little while, then hit our last party of the weekend with my mom's entire side of family where my cousin's twin boys (a year and a 1/2 old) kept us all entertained.

Luckily Tim and I both had Monday off (I'm off all week) because we literally spent the day being lazy - it was wonderful! This week I'm home doing some cleaning, organizing, rearranging, and unfortunately taking down some of the Christmas decorations. I'm hoping to see a couple of my friends before having to go back to work next week. I'm also hoping to clear out some room for this awesome bench Tim's dad built for us.

Click on the pictures to enlarge them



Thursday, December 22, 2011

Normal

According to my doctor, nurse and today's PFT results, I have normal lung function! WOO HOO! I had my clinic visit today at 11:00am, so I left my house around 9 to make sure I gave myself enough time. It only took me an hour and fifteen minutes to get to the hospital today - I think that's record time - there was no traffic! Of course, then I was 40 minutes early by the time I parked, but that's okay, got a little reading in.

I got in right away, they weighed me (same weight, yay!) then put me in a room, took my blood pressure (fine), oxygen levels (99%), and asked me a million questions about my medications and how I'm feeling (wonderful!). Finally, it was time for my PFTs. My goal for today was to get my FEV1 into the 90% range. The first test I did, I got an FEV1 of 88% - not bad, up from last time. I told the respiratory therapist (lady administering the test) that I was really shooting for 90s, so she was really encouraging and she said, "Okay, this time you'll get it." I tried again - same thing, 88%. Tried one final time (they always have me do at least three to get the average) and it was the exact same thing again, so I had to face  the fact that I wasn't getting into the 90s this time. The RT was still very encouraging telling me how 88% is still great, but I was still kind of bummed. When my nurse and doctor both saw my results, they were very pleased and pretty much just told me to keep up the good work!

I know I shouldn't be disappointed, but I kind of am. I have been really trying hard at keeping myself healthy - I was hoping the PFTs would reflect how I'm feeling. I'm at 144 days of compliance with my Vest and nebs, and I've been going to the gym twice a week for two or three months now. I feel much more than just 2% better. I'm definitely not going to stop anything I'm doing because I know it's working because I feel fantastic no matter what the PFTs say. I was glad to see an increase, rather than just maintaining, so I'm just going to keep pushing myself to keep going to the gym because I think that's what really making the difference. It also feels really good to be able to say that I have the lung function of a 'normal' person!

Tim and I have a very busy, travel-filled weekend ahead of us, starting as soon as Tim gets home from work tonight. I'm determined to keep my compliance streak alive even with all of our traveling, so as soon as I finish my PM treatment today, I'm packing up my Vest, nebulizer and accessories into the trunk to come with us on our little road trip across the entire state of Illinois. It'll be tough fitting in all of my treatments, but I can't let 144 days go to waste.

I hope everyone has a very Merry Christmas and I'll be sure to fill you in on all of our activities next week (adorable pictures included).

Thursday, December 15, 2011


Ok, so I'm finally getting around to answering some questions. Colleen has been waiting patiently, and I'm sure the rest of you have as well.
Jwags: Colleen and I frequently go out individually as well as together, so spending a random night alone is nothing new to either of us. I know it's a little easier for me to be alone than her and is just a difference in our personalities, but she is understanding and it usually doesn't effect my decision on whether or not to go out.
-- I have gained some weight in the past year or two. It's most likely from being out of school and having a set work schedule with free evenings (which allows me to snack all night...a really bad habit.) While I was in school I had classes, studying, work, stress, and more athletic activity to occupy my time. Now not so much, but I'm looking forward to joining the gym and exercising more which Colleen has inspired me to do.
I will continue answers to all of your questions soon!

Kalydeco Update

The Cystic Fibrosis Foundation posted this update on their website today:

FDA Grants Six-Month Priority Review of Kalydeco (VX-770) — First Potential Drug to Target Underlying Cause of Cystic Fibrosis
December 15, 2011
Vertex Pharmaceuticals, Inc., announced today that the U.S. Food and Drug Administration (FDA) has granted a request for a six-month priority review of a potential new CF therapy, Kalydeco™ (VX-770).

The company is seeking approval of the drug for people ages 6 and older with the G551D mutation of CF.

The expedited review sets a target date of April 18, 2012, for the FDA’s approval decision, four months earlier than the standard review time of 10 months.

If approved, Kalydeco (kuh-LYE-deh-koh) will be the first drug available that targets the underlying cause of CF. The FDA grants priority review for several reasons, including situations where a potential drug offers a major advance in treatment.

Kalydeco was discovered in a collaboration between Vertex and the Cystic Fibrosis Foundation, which provided substantial scientific, financial and clinical support throughout the development process.

Vertex’s application for approval of Kalydeco, submitted to the FDA in October 2011, included results from Phase 3 clinical trials of the drug in people ages 6 and older with the G551D mutation of CF. The results showed that those receiving the drug had remarkable and sustained improvements in lung function and other key symptoms of the disease, compared with those on the placebo.


This is fantastic news! I'm not sure exactly when it'll be released/sold to patients, and how much it'll even cost, but it's moving along quicker than expected - can't complain about that.

Monday, December 5, 2011

I LOVE MUSIC!!!

I don't know what I would do if I didn't have music in my life daily. It absolutely can turn my bad day around, it's an ultimate pick-me-up, can motivate me (especially while running), and sometimes it's good to just calm me down. I really enjoying learning song lyrics too. Not only is music fun to dance and sing along to, but I love when songs have great messages/lyrics to just soak up and listen to. I could make a list 100 songs long that I could call my 'favorites' and still feel like I haven't captured them all. Here's a list of some of my favorite songs: (if you click on the title of the song, it'll bring you to a youtube video so you can hear it! :-) )

  • Michael BublĂ©Sway; I love this song because it makes me want to learn how to swing dance! I absolutely love Michael BublĂ©'s voice, I could listen to it any day, anytime - makes me so happy.
  • Rascal Flatts is my all time favorite group and I pretty much love all of their songs!! Here are a few of my absolute favorites of theirs: Day Before You; Unstoppable; I Won't Let Go; Fallin' Upside Down; The first three have very special, moving lyrics to me - the fourth one is just fun!
  • Taylor Swift is another one of my favorites! I'd Lie; The Best Day; Long Live - I could listen to her ALL day long!
  • Keith Urban just has a beautiful voice: Somebody Like You; This is definitely my favorite song by him!
  • Jason Mraz: We Sing. We Dance. We Steal Things.; This is probably one of my favorite whole albums - I think it's the most played in my iTunes, yes, even over Rascal Flatts. I could listen to this album entirely without skipping any song and loving each one - highly recommend it!
  • Jack Johnson has a very soothing and comforting voice. He's great to just listen to when you want to relax. I really like Banana Pancakes, Good People and Better Together - that was our wedding song. :-)
  • 'N sync/Justin Timberlake: 'N sync was the first group that I was obsessed with - I had all of their CDs (still do!) and I saw them in concert in seventh grade! I also really enjoy Justin Timberlake's more recent solo stuff. I Drive Myself Crazy; LoveStoned/I Think She Knows
  • The past few years I've really come to love country music. It has amazing lyrics and really fun songs - here are some of my favorite country people and one of their songs that I enjoy: Carrie Underwood (Mama's Song), The Band Perry (If I Die Young), Zac Brown Band (Whatever It Is), Josh Turner (Would You Go With Me), Lady Antebellum (American Honey)
  • Lucky Boys ConfusionHey Driver; This is a local band from the Chicagoland area. Tim and I and some of our friends have seen them a couple times play at a bar in town. They really put on a good show - and it's not country!
  • Maroon 5: I believe I've previously expressed my thoughts in a different post on Adam Levine and his sexy voice, but this is my favorite song from them, by far! The Way You Look Tonight
  • Savage Garden: Truly, Madly, DeeplyHeard this song in 4th grade and have loved it since :-)
  • Dave Matthews BandAnts Marching; I'm not a huge Dave Matthews fan, but I really like this song.
  • Pentatonix: This is the group that won season 3 of the Sing-Off. I really enjoyed their interesting style of acapella singing! Video Killed the Radio Star
  • Steve Miller Band (and random classic rock/oldies): The Joker; Some Kinda Wonderful - adorable lyrics (Grand Funk Railroad), Ballroom Blitz (Sweet)
  • Aretha Franklin: RESPECT; This is my jam!! Just ask anyone who attended our wedding!
This seems like a lot, but I could keep going on, and on, and on -- this is so hard to stop! I absolutely love music, I cannot go a day without it! I hope you enjoy the playlist I provided for you! :-)