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! :-)

Sunday, November 27, 2011

Christmas Spirit

I hope all of you had a wonderful Thanksgiving and weekend! We did - it was great spending time with all of our family and to be able to relax and enjoy this nice, long weekend! This year, I've really been looking forward to Christmas and I don't know why. I don't really have anything on my Christmas list this year, but I've been in 'Christmas mode' for a while, especially this weekend.

We avoided Black Friday this year because ever since working retail, it hasn't really appealed to me. I worked in a big-box hardware store for three years and saw a lot of crazy people shopping the day after Thanksgiving, it kind of turned me off. I did take advantage of some black Friday deals online though, and I ordered our Christmas cards (which I'll post once I get them) and a gift for someone in the family, so I feel like I did accomplish something Christmas-y that day. Instead of hitting the stores, this year for black Friday & Saturday, Tim and I painted (and Tim re-did some drywall) in his aunt and uncle's two bathrooms in their house. They've been out of town visiting some of their family and will be back tomorrow to see it all completed - I hope they're happy with it. It was a lot of work, but I'm really glad we were able to do it for them. :-)

Sorting through all of our Christmas stuff!
I've been bugging Tim for a while now to get our Christmas tree out of storage so that I could put it up this weekend, so that's what we did today. This is definitely the earliest I've ever put up a Christmas tree, but like I mentioned before, I've been in the Christmas spirit lately! I had the music going, all of the ornaments laid out and the lights on -- it was awesome! Now we've got dinner going in the crock-pot and it just feels like winter/Christmas is coming full force and I'm ready for it (until we start getting snow!). Today, while I was going through all of our Christmas stuff I this awesome ornament which I didn't even know we had! I was very excited when I found it, so of course I had to share it. :-)

In other news, I've been compliant with all of my treatments for 119 days now, been going to the gym twice a week still (oh, I went the gym on Black Friday, too!) and my next CF clinic appointment is December 22nd - a little less than a month away. I'm really looking forward to that appointment, hoping that my PFTs show how awesome I've been feeling lately. :-)  (And from the amount of smiley faces in this post, I'd say I'm feeling really good!)

Wednesday, November 23, 2011

What are you thankful for?

I'm thankful...
  • to be healthy
  • that I have a fun, supportive, awesome husband
  • and lucky to have found someone who loves me for me, despite my chronic lung disease
  • that I have some pretty great friends
  • to have a job
  • to have a job that's really fun and that I love
  • to work with great, helpful co-workers
  • to call some of my co-workers my friends
  • to have a roof over my head
  • to have a working vehicle
  • to have money for all of my medication
  • that I live in a place that allows access to the best medication and medical advancements
  • for insurance (as much as I hate it)
  • for all of my family - my side and my in-laws
  • for the Cystic Fibrosis Foundation 
  • for all of my doctors/nurses who take amazing care of me :-)
  • to anyone who has ever donated to the CFF
  • that I'm able to exercise without getting too short of breath
  • to live across the street from a gym
  • to have such a great relationship with my doctor and nurse
  • to have learned so much about myself through writing this blog
  • to have so many people reading this blog and taking time to provide their feedback
  • to be able to live, laugh, love & breathe everyday!

Tuesday, November 15, 2011

Go Me!

I'm sorry, but I have to brag a little bit about my workout today. I don't think I've sweat this much since we decided to go hiking in over 100 degree heat index in July. :) I ran a whole mile straight for the first time since joining the gym - in about 12ish minutes, ten minutes on the elliptical, and then I went on the treadmill for another ten minutes which included jogging, a sprint, then cool down. I really think the sprint did wonders for my lungs (I'm still coughing!). I was already exhausted by then, but the person next to me was really encouraging and we did a sprint together (I would have never tried that on my own!). I'm going to try to add that into my gym routine each time, I could really feel it - even though it was only for about thirty seconds. I just feel so good, I'm breathing really well right now; I can't wait to see what my PFTs are in another month!

Friday, November 11, 2011

Things to Consider

I've always imagined that I'd grow up to get married, be a teacher, and a mommy. So far, I've got one of those goals accomplished, about half-way towards the teacher one, and not quite at the mommy stage yet. There are so many things to consider when having a child (more than I could even image as I was growing up): Do we have enough money? Do we have space? Will we be good parents? What will we do with the baby when I go back to work?...this list can go on and on, for a 'normal, healthy' couple. But add a mom with CF in the mix and the questions start looking like: Will our child have CF? How will my body handle a pregnancy? How will I keep myself and the baby healthy if he/she has CF? How far do we want to go to 'prevent' having a child with CF, or do we not mess with fate? Will I be able to go back to work after? Do we make enough money on one income if my health declines? Will our families and friends still be supportive if we have two CFers in the family?
It's a lot to think about. Numbers and probabilities start coming in to play such as 1:50, 1:602, or 1:2. Trying to make sense of it all, and trying to make the "right" decision, whatever that may be, is very difficult. I know I've posted about this before (here and here), but it's constantly on my mind and I wish there was an easy answer, but there's not - at least not right now. Isn't everything supposed to happen for a reason?? So, what's supposed to happen? What's the right choice??
By the way, I'm not looking for answers to my questions - I know that this is our choice, and only our choice but this is my way of 'thinking out loud'. 

Tuesday, November 8, 2011

100 and 5th

Today marks the 100th day in a row that I've done my vest (twice a day) and all of my nebulizers!!! Today also marks the fifth week that I've gone to the gym, two days a week! I am very proud of myself to reach these accomplishments, but I really look forward to continuing and making those numbers larger. I never thought the day would come where I'd say that I've done all of my treatments for over three months straight! I am also looking forward to my next CF clinic appointment which is December 23rd to see where my PFTs are at. My last clinic appointment was in August, and I was at 100% compliance for about three weeks at that point, so my PFTs weren't as great as I wanted them to be - even though they did go up a tad. I really hope that they have skyrocketed by the time I get tested in December.
A year ago, if you would have asked me how I would physically feel after being compliant with my vest/nebs for 100 days, I would have probably said something along the lines of having the best lung function I've had in a long time. Although I do feel great from doing all of my treatments, I don't think I felt much of a difference until I started going to the gym. I really feel like doing all of my treatments AND going to the gym has made me feel even better. I wish it hadn't taken me this long to figure this out!!! I've read it and heard it millions of times, but I was always too lazy to get up and exercise. I'm SO GLAD I finally pushed myself because I really feel like it's paying off with my lung function, and also my overall energy level.

So the moral of the story.... treatments + exercise = happy, healthy me!

 +

=

Wednesday, November 2, 2011

Questions for Tim

For those of you who have voted "yes" on the poll about Tim writing a post (so far there are 8!), can you please leave a comment about some topics you'd be interested in reading from him? I'm sure he's going to say there's nothing to write about so we must leave him with no excuses! :-) Thanks!

Tuesday, November 1, 2011

A Day in the Life of Me

When I first started my blog in January I posted a blog called Day to Day where I talked about what it's like day to day having CF. I recently read a blog where a cyster broke down her daily schedule to show how much she does treatments. I really liked this idea, so I decided to dedicate this post to the same thing. This is what a typical (Monday-Friday) day looks like to me.

  • 6:00am - Wake up (If I'm on my Tobi that month -which is another antibiotic neb- then I get up at 5:45am to each day to fit it into my routine.)
  • 6:05 - 6:50 - Morning Treatments: 

                                      - 30 minutes of Vest (3-ten minute sessions)
                                      - Albuterol nebulizer (~7-8 minutes)
                                      - Hypertonic Saline neb (~10 minutes) -- Both nebs are done during the Vest time
                                      - Clean Albuterol and HTS nebs
                                      - TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
                                      - 1 puff of Advair
                                      - Clean TOBI neb

This is what I look like when I do my treatments. Nebs and
Vest going at the same time.

  • 6:50 - Make lunch for the day
  • 6:55 - Get dressed
  • 7:10 - Take allergy medicine, Zithromycin (MWF anti-biotic), Zyrtec, and 4 enzymes then eat breakfast - which usually is a big bowl of cereal or oatmeal with a glass of milk. 
  • 7:20 - Take the rest of my vitamins (~4-6) I can't take my vitamins before I eat otherwise I'll get nauseous

This is approximately how many pills I take each day. The left
hand has all of my vitamins, anti-biotics, allergy med, and Zyrtec.
My right hand has about the amount of digestive enzymes I take in one day.

  • 7:25 - Brush teeth & hair, make sure I took all of my meds and did my Advair puff
  • 7:30/7:35 - Leave for work - need to be there by 7:45
  • 7:45-3:30 - WORK! (Mondays and Thursdays I stay later at work, so it pushes my evening stuff back)
  • 4:00 - Come home, change clothes, wash hands, empty out lunch box, get PM nebs prepared
  • 4:10 - 5:00 - PM treatments:


                                      - 30 minutes of Vest (3-ten minute sessions)
                                      - Albuterol neb (~7-8 minutes)
                                      - Pulmozyme neb (~7-8 minutes) -- Both nebs are done during the Vest time
                                      - Clean Albuterol and Pulmozyme nebs
                                      - TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
                                      - 1 puff of Advair
                                      - Clean TOBI neb
A = Albuterol, P = Pulmozyme

  • 5:00 - 5:45 on Tuesdays and Thursdays: Go to the Gym for at least 30 minutes of exercise. 
  • 5:45 - EAT (but not without taking my enzymes first!) I eat lunch at 10:30am at work, so by the time I'm done with all of my treatments after work, I'm starving. On days that I go to the gym, I usually eat a granola bar before I go to give myself a little energy boost.
  • Shower - I usually take my showers after dinner (or when I get back from the gym) because I don't want to wake up any earlier in the morning, especially on TOBI months - 5:45 is early enough!


I really have found that if I do my second round of treatments right when I get home from work, I rarely skip them. It also motivates me to get them out of the way at that time, so I can spend the rest of the night hanging out with Tim.
Speaking of Tim, I've been strongly hinting towards him to write a post on his own, of what it's like to live with a wife with CF, or anything really that he can think of. If you'd be interested in reading a post (or two, or three, or however many I can convince him to) written from his perspective, please vote on the top right-hand side of my blog. Maybe if he sees that other people want/care to read it, then he'll do it. If you also have something you'd be interested in reading from his perspective, please feel free to leave a comment on this post and I'll make sure to relay the message to him. Thanks!
It's 5:00 and it's Tuesday = Time to go to the gym! This is my fourth week going and I've been going twice each week, yay!

Sunday, October 23, 2011

Great Strides 2012

Yes, you might think it's a little early to be thinking about Great Strides...well not for me. As soon as our event is over, I'm already thinking about what we can do better/different for the next year. The next Great Strides event I'm participating in will be in DeKalb on April 14th, 2012 - so about six months away - that leaves plenty of time to plan!
This year, I'd really like to get team t-shirts going again for my team Colleen's Friends & Family. I tried to get them going about four years ago, but it didn't turn out as well as I had hoped, so I kind of gave up on the idea, but I'd love to try again. The DeKalb site really means a lot to me (as many of you know), so I would love to have an awesome turn out and awesome team t-shirts to go along with it. A fellow cyster (female with CF) was making team t-shirts for her team from a site, so I used the same site and came up with a few 'rough drafts' to start. I am willing to switch anything around, change colors/fonts, pretty much up for any suggestions to make these shirts something that my team would enjoy wearing every year for Great Strides.
(Click on the pictures to enlarge them)









If you couldn't tell, I really like the "Find A Cure!" for the back, since that's pretty much the whole point of Great Strides = raise awareness and raise funds to support research to find a cure for CF. It's the front that I really have no idea what to do with. I also really like the tye-dye, but I'm up for changing them to any color. I just would love us all to have the same matching (standing-out!) t-shirts to make this 2nd annual DeKalb GS even better than it was last year!

Wednesday, October 19, 2011

KALYDECO!!!!!

From the Cystic Fibrosis Foundation website

Vertex Submits Application to FDA for Approval of VX-770 – First Potential Drug to Target Underlying Cause of Cystic Fibrosis

October 19, 2011

Vertex Pharmaceuticals, Inc., announced today it has submitted an application to the U.S. Food and Drug Administration for a potential new CF therapy, VX-770 — under its new proposed trade name, KALYDECO™.
If approved, it will be the first drug on the market that targets the underlying cause of cystic fibrosis. Therapies available to people with CF to date only treat symptoms of the disease.
The company is seeking approval for the drug in people with cystic fibrosis age 6 and older who carry at least one copy of the G551D mutation of cystic fibrosis. (THAT'S ME!!!)
KALYDECO (kuh-LYE-deh-koh) was discovered in a collaboration between Vertex and the Cystic Fibrosis Foundation, which provided substantial scientific, financial and clinical support throughout the development process.
“The CF Foundation is thrilled that KALYDECO is on track for possible FDA approval in 2012,” said Robert J. Beall, Ph.D., President and CEO of the CF Foundation. “This is a significant step forward in our collaboration with Vertex and is further validation of the CF Foundation’s drug development strategy. We remain committed to accelerating the development of similar targeted medicines that will benefit all people with cystic fibrosis.”
Vertex has asked the FDA for priority review of the potential drug, which, if granted, could shorten the review from 10 to 6 months. The FDA grants priority review status for several reasons, including in situations where a potential drug is considered a major treatment advance. (YAY!!!!!)
Results released earlier this year from Phase 3 clinical trials of KALYDECO in people with the G551D mutation of CF 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 placebo. (YAY AGAIN!!!)
As FDA review of the potential drug gets underway, Vertex has set up a program to provide KALYDECO to people age 6 and older with the G551D mutation who are in critical medical need and could benefit from the treatment prior to potential approval. (Not me, but great idea for those who could benefit!)
The expanded access program is designed for people with CF who have highly limited lung function and meet other criteria. (Information about the program is available at CF Foundation-accredited care centers.)
KALYDECO is currently being evaluated in combination with another oral drug in development, VX-809, in people with the most common mutation of CF, Delta F508. 
Vertex plans to begin the second part of the Phase 2 KALYDECO and VX-809 clinical trial this month and will evaluate the two drugs over a longer period of time.


Frequently asked questions about Kalydeco (this one was my favorite):

What were the results of the VX-770 Phase 3 clinical trial in adults?
The Phase 3 clinical trial tested VX-770 in patients age 12 and older who carry at least one copy of the G551D mutation of the CF gene. Patients who received VX-770, compared to those on placebo, showed a marked improvement in lung function (FEV1).
Those who received the drug gained 10.6 percentage points more on a lung function test after 24 weeks than those getting a placebo, a difference that is statistically highly significant. Patients continued to take either drug or placebo for another 24 weeks and the improvement was sustained. Lung function, the primary endpoint of the trial, was measured by how much a person could exhale in one second, a standard test.
In addition, patients receiving VX-770 gained nearly seven pounds, on average, over the course of the trial. People with CF have a hard time gaining and maintaining weight because the buildup of mucus in the pancreas limits the body’s ability to absorb essential nutrients and vitamins.
Patients also showed improvement in other secondary endpoints of the study, including reduced likelihood of pulmonary exacerbation and decreased respiratory symptoms.
In addition, average sweat chloride dropped toward normal levels in patients on VX-770, compared to those on placebo. Excessive sweat chloride is a key clinical indicator of the disease.
The overall findings are profound because they demonstrate that a chemical compound can improve multiple clinical measures of CF by targeting the basic defect. CF therapies currently on the market address the symptoms of the disease, not the underlying cause.


This is such amazing news for me and everyone in the CF world!! Especially for me and the other 4% of the the CF population with the G551D mutation!!! The results of the clinical trail were outstanding!!! The progress of this drug gives me so much hope for the future. Yes, it may take another year or two before it is available for CF patients, but hey, I've been waiting 23 years for something like this, so what's another two?! I am very excited to share this news with my readers, friends and family. I am also thankful for your love and support over the years. Because of your donations, drugs like this are making significant progress and significant changes in peoples' lives. THANK YOU to anyone/everyone who has donated to the Cystic Fibrosis Foundation because you are making it possible for me to live a wonderful, happy, and healthy life.

I believe that one day this drug will help me achieve my ultimate goal: 
To LIVE, LAUGH, LOVE and BREATHE for a long time!!!!

Monday, October 17, 2011

Hodge-podge

This blog is going to be a little bit about a few of things I have on my mind currently - some will be a little bit of venting (sorry in advance) and some will be a little update on recent events, and whatever else I can think of.

First of all is my little (might be bigger than expected) venting session. Now, if you're a fairly new reader you might not be caught up on my hatred for smoking, so if you'd like to read about it you can go here. We have also faced a similar situation to which I'm about to explain and you can read about that here which makes me even more annoyed that I'm having to deal with this AGAIN, that was the whole reason we moved in the first place! Today I got home from school (work) and it smelled like not cigarette smoke in our apartment - it was the first thing I noticed. Now, I HATE the smell of cigarette smoke and I HATE even more the hate of this kind of smoke!! I kind of had a rough day at work, then I had to stay late (which was fine), then I had to go run a couple errands after work, so I was already kind of annoyed and tired, then I got home and smelled this and I was furious. (Sorry, Tim! He had to listen to all of my complaining.) I immediately went downstairs to talk to our neighbors.
For those of you who don't know, we live in the upstairs of a house and there are two guys that live on the main level. They've been fine so far (although I have smelled this before, but not this bad, and I've let it slide because we've always had the windows open), very nice and quiet. But now that we have the heat on and the windows closed, the smell was very strong. I knocked on their back door and a few seconds later one of the guys answered the door and I said, "If you're going to smoke, you need to do it outside." He said, "Okay." And then I said, "Because I can smell it coming up through our heat and it's going to be a major problem." He nodded his head and said okay. I went upstairs and opened the windows and turned off the heat to try to get rid of the smell. It doesn't seem too bad anymore, but I can't tell if I'm just used to it, or if it's going away. Hopefully I won't smell like it tomorrow when I leave the house - I don't think it was that strong for long enough to make everything smell bad. But, if I do smell it again, I will be calling the landlord (a good friend of mine's mom) to have her do something about it. They're lucky I'm not a b***h - I really could have called the police on them for something like that, but I wouldn't do that. I'm assuming they won't do it anymore. If they do, I'll tell them about my CF and why it's so important to do that OUTSIDE (or really not at all, but I'll keep that part to myself), but today I was too annoyed to tell them about it (plus I think he was in la-la land when I was talking to him). Now that I have that 'off my chest' I'll try not to be so crabby tonight.

Another thing I wanted to write about was the wonderful weekend we had! It was Tim's sister's baby shower this weekend, so myself, Tim, and Tim's aunt & uncle drove down about 4 1/2 hours to spend the weekend with her and our family. She's due in December with their first child, a little boy, who they'll be naming Isaac David. I'm very excited that we're going to have a second nephew! :-) She got lots of cool stuff for baby and we're all anxiously awaiting his arrival. I also got several comments about how when Tim and I have kids, we need to have a girl because there are too many boys in the family right now. :-)

Speaking of babies, I have to say CONGRATULATIONS to my fellow fibro (male w/ CF) Ronnie and his wife on their beautiful baby girl born this morning! I follow his blog which you can read here, and he also is the creator of my other favorite site CysticLife. Their daughter was born a couple weeks early, so she was a surprise to all of us on CysticLife who have been anticipating her arrival soon!

And finally, I wanted to clarify about my compliance lately with my treatments. Don't worry, I'm still at my record of 10 weeks, but it's been about 97.5% compliance. I have completed 100% of my Vest treatments and all nebulizers since July 31st. I have, unfortunately, missed a few puffs of my Advair and two or three days of vitamins. I know it may not sound like much missed, and it's really not, but I would love to be able to say that I haven't missed/forgotten anything since the end of July, but I am still very proud of myself for what I have accomplished. I was very tempted to skip my nighttime treatment on Saturday because I was so exhausted from our day's activities and we were staying in a hotel, but I forced myself to do it. I wasn't going to throw away 10 weeks of hard work and dedication to get to bed just a little earlier, especially when I dragged all of my crap along anyway. It is still possible to do treatments in a hotel:




Darn it!!! I just realized that I missed the first 30 minutes of my new favorite show, The Sing Off. And I said to Tim, "UGH, this is the worst day ever!!" It's really not, I'm being overly dramatic and I'm extremely hungry (which means crabby). I just need to eat and go to bed!

Ahhh....It's just one of those days...

Wednesday, October 12, 2011

Go Me!

Today was day number two for going to the gym! I know it's only day two, but I'm still proud of myself. I was exhausted after work today, but I made myself go because I knew that I wouldn't be able to go any other day this week because of plans/gym times. I found that the 30 minutes went by pretty quickly today while I was there and that I am pretty good at pushing myself to go a little bit further. For instance, I was running (more like jogging) on the treadmill and I set a goal to run for two minutes. Well, two minutes came around and I decided to keep going for another minute. I made it to three minutes and pushed myself to three minutes and thirty seconds. Now that might not sound like too much, but I was sweating my butt off and for it being my second day at the gym, I think that's pretty darn good!

I also noticed that while I'm there for the half hour, I really don't think about anything. It's a wonderful way to clear my head of the stressful (sometimes) day at work, and just focus on pushing myself and focus on my breathing. Yesterday I did my treatments before I went to the gym, and today since the gym was only open til 4:45, I went to the gym first, came home and took a shower, and I'm doing my treatments now. I felt like I was able to breathe a lot better and deeper yesterday when doing my treatments first. I was also able to cough and get everything out before exercising yesterday which I liked a lot better than today. Today while I was there, I had to cough a couple times, but I had no where to spit and I really hate when that happens. I'm glad that I tried both options (treatments first, then gym, and vice versa) because now I know which one feels a lot better to me.

This weekend's going to be pretty busy, so my main focus is going to be making sure that I don't skip any treatments to keep my streak alive. I'm at 9 1/2 weeks!!! GO ME!!!

Tuesday, October 11, 2011

Finally!

When Tim and I moved into our new place in April, I noticed that we were now across the street from a park district gym. Last week I finally went in there to see if they had open gym hours and what I needed to do to join. I was very surprised that it cost me only $10 for an entire year since I live in the community. The hours are a little weird and the gym is small, but I can't complain. It has several ellipticals and treadmills (among other things) which is all I need. 
So today after work, I came home and did my treatments right away like I always do. Afterwards, I went straight to the gym and worked out for 35 minutes. I was very proud of myself for finally going. I really hope that I can keep this up just like I have with being compliant with my treatments. Right now, my goal is to twice a week, for at least 30 minutes for a few weeks, and then I will step it up if I can keep that up. It felt good to push myself today. It really felt good to be able to work for that long and still be able to breathe deep - no coughing fits or anything! I really hope to keep this up because I know it's good for me. Today I totaled about 2 miles in about 30 minutes, so I'm hoping to increase my mileage in that amount of time eventually. I added a 'goals' page to my blog this morning and one of them is to complete a 5k (not walking). I'm going to try to keep that in my mind as motivation to keep going to the gym. I'm also hoping that eventually after going to the gym for a while, it'll increase my PFTs, too. 

Sunday, October 9, 2011

The Best Five Years

This weekend marks the fifth year that Tim and I have been together total, and our first wedding anniversary. Below there is a picture for each year and a little bit about our story.


Tim and I met my freshman year of college and his junior year at NIU. My roommate briefly dated his roommate and that's how we met. It was only a few weeks into the school year when we met, and we have been together ever since. This was one of our first pictures taken together in November of 2006.

This was our second Christmas together and our first Christmas tree. Yes, we strung all of that popcorn one night! This picture was taken December of 2007.


This was taken at Tim's graduation in December of 2008. I was in the middle of my junior year here and Tim  was graduating. This was the last year I spent in the dorms before we moved in together. 


On July 4, 2009 Tim proposed in Wisconsin Dells, WI. A month later we moved into our first apartment together and I started my senior year of college, which included a semester of student teaching. This was one of our many engagement pictures taken by my cousin, Melissa, in September 2009.


On October 9, 2010 we got married at Hopkins Park. (You can read all about the day of here). We had a gorgeous, stress-free day, and we had so much fun! 


 Today we had some friends over to hang out and grill and they brought over this lovely, delicious cookie! (Thanks Kristen & Ryan!) It's hard to believe it's been an entire year already. People say that the first year of marriage is the hardest - if this was the hardest year of our marriage, I'm definitely a happy lady and looking forward to many more years! 

Saturday, October 1, 2011

Out Run CF Success!

Today, Tim and I participated in Out Run CF to raise awareness about Cystic Fibrosis. I haven't been exercising as much as I'd like to since being back at work, so we decided to just walk this morning. We walked 1.2 miles total, to the bank and stopped to get Tim some coffee on the way back. I felt so good on the walk because it was pretty cool outside (about 45 degrees), and it was nice and sunny, and I was breathing so well since I did my treatments right before we left. 
I'm hoping that next time for this event I can get some more friends/family to participate with me. But I know that I have several friends participating on their own today and I look forward to seeing their pictures. 




Sunday, September 25, 2011

Never In A Million Years

Never in a million years did I think I would be posting about something like this and posting pictures. But it's something that I've had to deal with my whole life, especially more so over the past few years as I've gained weight. Don't get me wrong, as a CFer, I'm supposed to have a healthy weight, so gaining weight is encouraged, but it's hard when I don't like the way it looks. What am I talking about? My lovely CF belly! If you know me, you know what I'm talking about and I'm sure you've seen it. I thought it was just the way I was built until I joined CysticLife and realized it's a CF thing....awesome, thanks CF.

I was always underweight in high school and before, but when I went to college, I started steadily gaining weight. For CFers, it's hard for us to absorb fats/nutrients from our food, so it's hard to gain/maintain our weight. When I started gaining, my doctors were very pleased, but I was not. It was hard as a college student to start gaining weight, and noticing it physically, but I knew I had to do it to be healthy. I'm now at a healthy weight that both the doctors and I are pleased with, but it's still always in the back of my mind that my belly sticks out. Plus, I have three scars on my stomach from a surgery when I was born, so I feel like it gives a look of rolls...even better. It also doesn't help that I've got skinny little arms and legs, so I feel like it sticks out even more. Doesn't matter how much I've eaten, or not eaten, if I'm bloated or not, it's always there. In fact, last week at school I had a student ask me if I was pregnant -- not something I was happy to hear about, but oh well, gotta laugh it off. I can't wait to actually be pregnant so I have a reason to have a belly! I'm not posting all of this to say how I feel bad about myself, it's just another 'joy' of CF. So, without further ado...here are a couple lovely pictures of the infamous CF belly:
July 2010 - Lovely, huh? Doesn't help that I'm about
to eat an enormous amount of my birthday cake!

October 2010 - I hate that I have this picture because
it's from my wedding day, but that's what it looks like
when I'm relaxed. Plus I was at my heaviest
weight here (4 pounds more than today)

July 2011 - Taking a break from hiking
I want to thank Inhaling Hope (another CF blog I follow) for giving me the courage to create a post about this - read her blog about her CF belly here....see I'm not the only one! :-)

Kinder Quotes

It's a guarantee that I will laugh at something that one of the students says everyday! Here's what I have so far for this school year...
*First full day of school, a little kinder (not from my class) gets off the bus and tells me, "I'm going to go look for where I have to put my backpack. My mom says that I have to try....(hesitation) but if I can't find it, I'm going to come find you!" A few minutes later she comes running to me with a huge grin on her face saying, "I found it, I found it!"

*Again, the first full day of school - A little girl in my class says to me, "I'm good at school, I listen."

*We were just lining up the Kinders from recess and it started sprinkling and lots of the kids shouted, "oh no, it's raining!" And another little kid shouted, "How are we going to get home??"

*This happened in another class and was told to me by another assistant: The class was talking about their favorite restaurants and little girl raised her hand and said, "Stinkin' Wendy's." The teacher didn't understand what she said, so she asked, "Did you say Steak & Shake?" And the girl replied, "No, stinkin' Wendys. That's what my mom and grandma say when they're getting ready for work - they don't want to go to stinkin' Wendy's!!"

*We were talking as a whole class about how to sneeze and cough into your elbow so that you don't spread germs and a student said to his neighbor, "I just bless you-ed in my arm!"

I know it wasn't very many this time, but I promise there will be more to come throughout the school year. :-)

Wednesday, September 21, 2011

CRAZY!

Sometimes this is how I feel!
This is the word I have used over and over to describe the past few weeks! My schedule has changed probably at least ten times and when it finally feels like we're getting into a routine of things, something else comes up! I never realized how much goes into setting a routine for a child, a classroom, and especially for a whole school. For those of you who don't work in the education field and have children in school, please be understanding and patient with teachers, at least, through the first month because it's crazy the amount of work that they do!

The class I'm in is made up of 28 students so it gets kind of hectic. Luckily the classroom teacher has years of experience and so much patience, and there are four assistants in the classroom to help also. All help is needed sometimes, but I think we're making progress. I know that I would definitely be struggling with this class if I was their teacher - especially first year! (I'm going to wait until the end of this week to see if I can get a few more 'kinder quotes', and then I'll post what I've got so far.)

As far as my health goes, I'm finally getting over my cold that I talked about a few posts ago. I decided not to go on antibiotics because I've been keeping up with my treatments so well, I think that helped me get it out on my own. Oh, and speaking of treatments, I have to brag a little bit here. This past weekend, we went camping with Tim's whole family, (I forgot my camera!!!) which we do every year and is always so fun, and this year I am very proud to say that I did all of my treatments while we were there - I only missed one puff of Advair! I'm really hoping that if I keep up with everything that I can maintain the lung function I had at my doctor appointment a month ago - I'm hoping I didn't decline after this little chest cold.

One thing I have definitely been having trouble with recently is exercising. I brought this up in my post a couple weeks ago also, and someone made a comment about how much I move around at work which I never thought about. I am constantly up and down off of the floor with the kids, crouching down to help them at their seats, chasing after them when they try to leave the playground or classroom (yes, this has happened a couple times), playing with them in PE and just walking with them in the hall wherever they go. I'm thinking about getting a pedometer to see how many steps I'm taking during the day because I know I'm definitely getting a work out when I'm at work, too. I would still like to keep up jogging/walking/Zumba whenever I get my energy back, but I'm so exhausted when I get home the past couple weeks, that I do my treatments, eat dinner, then just lay around for the most part until it's time for bed. I really wanted to be able to jog a mile without stopping for Out Run CF next weekend, but I haven't been running in over a week, so I'll just try my best. If anyone has suggestions about how to get back into it, I'm all ears. I'm going to try to get Tim to go on walks with me a couple times a week again to at least get some extra movement in the evenings.

Sunday, September 18, 2011

Out Run CF

Just want to send out a reminder to all of my readers about Out Run CF which is coming up in less than two weeks, on October 1st! It's not too late to register using the link below(although, you'll get your t-shirt after Oct 1st) and join in on the easiest 'race' for CF!  



The first Out Run CF Virtual Race was a huge success. Runners and walkers from all over the world came together with one thing in mind, to Out Run Cystic Fibrosis! This fall, on October 1, 2011, we plan to do it again. The Rock CF Foundation and CysticLife are joining forces, once again, to bring you another Out Run CF Virtual Race.


In case you missed out last time, or need a refresher, here is how it works. Anyone and everyone is invited to participate: Fibros, Cysters, parents, spouses, friends, extended family, you name it! Participants will find a route near their house. Then on October 1, 2011, EVERYONE will lace up their sneakers and hit the pavement in their Out Run CF shirt (Each registrant will receive a t-shirt unique to this fall’s race from us in the mail).
No distance is too long, or too short. YOU pick YOUR mileage. 1 mile? 5K? 10K? 10 miles? Half Marathon? Marathon? It’s up to you! Nothing is too fast or too slow YOU pick YOUR speed. We just want to get the entire CF community out of their houses and into their running shoes on the same day, for the same cause.
Registrants can blog about their training, ask questions, and share tips on CysticLife.org. We want the entire site to be plastered with talk of exercise, running, and encouragement. On race day, we want people to post their times and their experiences. Let’s make this Virtual Race even BIGGER than the first one! Let’s make it the biggest race the community, and the world, has ever seen!!
So here again are the hard facts:

Who: Everyone
What: Outrun CF Virtual Race held by Rock CF Foundation and CysticLife
When: October 1, 2011
Where: Anywhere
Why: Because anyone can run—whether it’s for a minute or a marathon! Together we can Out Run CF.
How : Register at http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-fall-edition-2011

Helpful sites to get you started:

CysticLife.org—Blog about your progress, ask questions about training to the community, post Airwaves with your daily run updates, connect with others to encourage them and be encouraged

Dailymile.com—Make and account and join the Rock CF/CysticLife group to track your miles and keep track of others!

Facebook.com—Join the Out Run CF group to see how many people are outrunning CF and connect with them!