Tuesday, January 31, 2012

Amazing, Fantastic, Wonderful CF Drug Advancement Today!!!

Chances are you've already heard/read about the wonderful thing I'm going to post about if you're on CysticLife or you're my Facebook friend, but that's okay! It's too spectacular to not read it again!

This is how I feel right now!!
The FDA approved Kalydeco, the new drug that targets the underlying cause of CF in patients with the G551D mutation (ME!) - about 4% of the CF population!!!!! I'm currently 'too healthy', according to my CF doctor, to receive the drug right now, but that is a-okay with me. :-)

Here's what the Cystic Fibrosis Foundation had to say about it. 

Here's what the FDA had to say about it.

Here's what Vertex (the company who is producing the drug) had to say about it.

It's such an amazing feeling to know that all of the clinical trials/studies have definitely paid off! But it is SO important to keep spreading awareness and raising money so that the other 96% of CF patients can see their new medication come through the pipeline and get FDA approval, too. There are several clinical trials going on right now for a combination drug for those with CF with the most common mutation, Delta F508.

30 Days of Blogging: Day 13

Day 13 - A few of your favorite quotes, mottos, or verses

I previously did an entire post of quotes that I like, so several of these may be repeats from that, but I'll share a few of my favorites.

Obviously one of my favorites is 'Live, Laugh, Love' and I've added 'Breathe' to the end of that for this blog. It's also something I'd like to eventually get a tattoo of, but I'm trying to figure out where to place it on my body that's professional yet where I can still see it. (Any ideas would be appreciated).

"You were given this life because you are strong enough to live it." - Unknown
Sometimes when CF gets tough, or just life in general, I need to remind myself of this quote because I think it is absolutely true!

"Do what makes you happy, 
Be with who makes you smile
Laugh as much as you breathe
And love as long as you live." - Unknown
This one is similar to 'live, laugh, love' but I still really enjoy it. Again, another thing to keep in your mind to keep yourself happy.

'It means no worries for the rest of your days' :-)
"Those who have a reason 'why' to live, can bare with almost any 'how'." - Victor Frankl, author of Man's Search for Meaning - Yes, it's tough living with CF sometimes, but I have many amazing people/opportunities/reasons to live, so I suck it up and make the most out of my life!
This was a book I read in high school and I've always kept this quote in mind. I'd really like to read the book again. I remember I enjoyed it, but I think it might have a different meaning to me several years later.

And finally: ------->

Monday, January 30, 2012

30 Days of Blogging: Day 12

Day 12 - Your current relationship status

Well, as you all know, I am very happily married! :-) We've been married for one year, three months, and three weeks now and it's been great. Tim is a wonderful husband - he's very supportive and he makes me laugh all the time! And because you haven't seen enough wedding photos from my other wedding blogs (here and here), here's one more.

Sunday, January 29, 2012

30 Days of Blogging: Day 11

Day 11 - What's in your make-up bag/purse
Well, I'm not a big make-up person, so everything in there is probably really old and is rarely used. Now my purse, on the other hand, is full of crap all the time! I hate carrying a purse - if I didn't have to carry my enzymes with my everywhere, I would love to never carry a purse. But since I have to have it with me pretty much everywhere I go, I fill it with anything/everything. Yesterday, I went down with some family to Tim's cousin's fifth birthday party, so my purse is even extra full this morning.

  • Wallet
  • Keys
  • Bottle of enzymes
  • Snacks (an apple and cheese & crackers - for the four hour round trip we had yesterday. It's not very unusual for me to have a snack or two in there even if I'm not traveling.)
  • The Girl With the Dragon Tattoo (also for the car ride)
  • $0.20
  • Several receipts 
  • A coupon for Johnsonville Brats
  • Chapstick
  • Little pack of tissues
  • Little notepad
  • A purple pen, a blue pen and a mechanical pencil
  • Hand sanitizer
  • Tweezers
  • My watch

Saturday, January 28, 2012

30 Days of Blogging: Day 10

Day 10 - A photo of your favorite place to eat
Well, as many of you might know, I love to eat! I've always had a huge appetite and I can pretty much eat as much as an adult man...and of course I've always had trouble gaining weight. I know, I know, it's 'not fair' - but there's gotta be at least one positive to CF, right?! I enjoy going out to eat with Tim, friends, family, anyone. One of my favorite places is a place called China House in our town. It's a Chinese buffet and recently they added sushi (which I don't eat) and a Hibachi grill (which is awesome!). It's by no means very fancy, but I've always really enjoyed it.
I'm also a big fan of Chili's. They, of course, added one near my parents house right when I moved to college, so anytime I went back to visit friends, we always went to Chili's. There's also one near the Geneticist's office, so whenever we had to go see him, we'd stop there for dinner. Again, it's not very fancy, but their food is always good, and in my opinion, it's much better than Ruby Tuesdays or Applebees. There are very few places that I won't go to eat at, but these are the two that are sticking out as my favorite places to go.

Friday, January 27, 2012

30 Days of Blogging: Day 9

Day 9 - A photo of the item you last purchased - Sorry, this one isn't very exciting.

The last 'item' I purchased was gas for my beautiful little car :-)
Luckily I only drive about 4 1/2 miles to work everyday, so
less than 10 miles a day round trip - definitely
saves on the amount of times I have to go to the gas station.
I love my car! :-)

Gas was $3.39/gallon when I got
it last night after work and I filled 3/4 of my tannk

Thursday, January 26, 2012

30 Days of Blogging: Day 8

Day 8: A Song to Match Your Mood

Well I woke up this morning with Luke Bryan's 'Country Girl (Shake It For Me)' stuck in my head. As soon as I started my treatments, I played it and it just woke me up. So I guess I'd say my mood is peppy and ready for the day. I'm glad it's already Thursday, plus it's spirit week at school and today's PJ day, which is awesome!

Wednesday, January 25, 2012

Lungs, Workouts & Great Strides

I'm a week into my 30 days of blogging and I hope you've been enjoying the different posts. I'm going to keep going with it, but I thought I'd throw in a 'regular' post. There hasn't been too much excitement here really. A few weeks ago I posted about having some lung bleeding problems, so I was put on an oral antibiotic for two weeks. Well about 10 days into it, I started coughing up blood again. It was totally out of the blue, but not as much as the first time. So, I emailed my nurse again to let her know and see what her suggestions were as to why it was happening and what the next step was.

She discussed with my CF doctor, looked at my vitamin K levels, and told me they have no idea why it's happening, and that I have normal vitamin K levels, but they decided to put me on a small amount of vitamin K for a little while to see if that helps. I've been on that for about a week now and I've had no bleeding. I'm finished with the oral antibiotic now, and my mucus seems like it's back to normal.

I returned to the gym last Thursday and completed 3.3 miles (~5K) on the treadmill with a combination of walking and running. It took me about an hour, but I'm so glad I did it. It was tough, but it felt so good know that my body can handle that much exercise at a time. Yesterday, I did my first "Insanity" workout. The PE teacher at our school has them on DVD and instructs the staff through the workouts everyday after work, so along with about 15 other staff members, we suffered (I mean, worked) through a cardio/balance routine. This morning my legs are killing me, but it was nice to switch up my work outs instead of just running all of the time. I'm going to try to do the Insanity workouts on Tuesdays and a 5K on the treadmill on Thursdays, and ultimately, I'd like to get that 5K going outside once the weather warms up to train for a real 5K race.

I've also been focusing a great deal of my time to getting my friends and family pumped up for Great Strides this year (April 14th). I've decided on purple shirts for our team, so now it's finally time to start taking orders. Also, one of my awesome friends from work is starting staff team called "Colleen's Cortland Crew" -- I'm very excited and thankful for that!! I love that I have so much support in my life!! Thanks everyone!!! :-)

30 Days of Blogging: Day 7

Day 7 - Your dream wedding
Today, Tim and I have been married for one year, three months and sixteen days.

This is a tough one because there's not one thing that I would have changed about our wedding, unless someone told us we had an unlimited budget. Sure I would have loved the sunset on a beach thing, or a huge outdoor venue with a fancy dinner and a big DJ -- but that's not us. We're simple, we enjoy the outdoors, good food, good music and a fun time with family and friends and that's exactly how the day was. It wasn't stressful or uptight, it was so relaxed and fun!
Our photographer (Brown Eyes Photography) created this collage
of pictures while she was editing our photos. I absolutely love it
because I think it captures how much fun we had!
*And yes, that's the 'Village People'*

Tuesday, January 24, 2012

30 Days of Blogging: Day 6

Day 6 - A photograph of an animal you'd love to keep as a pet 
Eventually, when we get a house with a yard, I'd love to get a big dog.

German Shepherd

Border Collie 

Monday, January 23, 2012

30 Days of Blogging: Day 5

Day 5 - Talk about your pets
In May 2011, Tim and I adopted a nearly two year old cat, named Archie, from an animal humane society. We went there with a friend who wanted to get a cat, and of course we ended up finding one that we liked and went back the next day to adopt him (and to this day, our friend still hasn't gotten one). I've never had a cat before, never really been around them until I met Tim and his family, and then I found out that I was allergic to cats. But somehow, in that four years of knowing Tim and being exposed to cats, I think I built up some immunity to them or something because I don't have any allergy problems with Archie. He's a total goofball, but very sweet, and fits in very well with Tim and I. He loves to play and he loves fleece blankets.

Archie's a St. Louis Cardinals fan, just like Tim :-)

Archie sitting in my Vest bag -
he likes to climb up in my chair while
I'm doing my Vest and put his front paws
on my back. Weirdo.
We got this new papasan chair for Christmas and
Archie will not go in it without the fleece blanket.
(I think he has some sensory/texture issues)

Sunday, January 22, 2012

30 Days of Blogging: Day 4

Day 4 - Your favorite photograph of your best friend(s)
It's really hard to come up with only one favorite everything!

My closest friend's name is Catie and I've known her since I was in 8th grade, so for about 10 years now! I met her through mutual friends and we became much closer when we were sophomores or juniors in high school. She probably knows every single thing about me and has been an amazing support for me, especially through high school. Catie was my maid of honor in my wedding, and even though our lives get busy and we may not see each other as much as we'd like to, I still feel like I can tell her anything/everything about what's going on in my life!! Here are some pictures of us through the years (the picture on my blog title under 'laugh' is us at my bachelorette party).

July 2006 - my 18th birthday
Nov. 2007
Our signature face :-)

Oct. 2010 - My wedding day

Saturday, January 21, 2012

30 Days of Blogging: Day 3

Day 3 - Your idea of the perfect first date

Probably not a picture that  you
 would think of to go with this blog
title! :-)
Well, I don't think I'm going to be on another first date again, so I'm going to direct this post a different direction a little bit. Tim and I met when I was a brand new freshman in college - meaning about the third week into my college career. The first time we met was in my door room when my roommate and I invited some people over. We went to a few parties together after that, but our first official date (a double date) was to see the movie Jackass Number Two together - which told us a lot about each others' sense of humor! I don't remember what we did after, I don't think we went to dinner or anything, I think the four of us just all hung out back in a dorm room or something. Since both of us didn't have cars and we were poor college students, a lot of our 'dates' were located in the dorm dining halls! :-)

But the best date that I can remember was definitely our first Valentine's Day! Tim wouldn't tell me where we were going, how fancy/casual to dress or how we were getting there, so I pretty much had no idea what was going on. We had been dating for about four months at this point, so we were still in that beginning getting-to-know-you stage so I had no idea what he was planning. So on the night of Valentine's day I was in my dorm room trying to figure out what to wear - didn't want to overdress if we were going somewhere casual, didn't want to under-dress if we were going somewhere fancy (I don't think he realized how much I was stressing over what to wear!!). So finally he calls me and says that he's downstairs in the lobby waiting for me. I go downstairs and there he is with his black pants, gray tucked in shirt, and black tie carrying red roses for me! It was the sweetest thing ever! We went outside and his friend Torry decided to be awesome that night, (and his two friends were in the car, too, which at first I thought was weird) and drive us to the other side of town to the cutest little Italian restaurant where Tim and I had dinner. While we were at dinner, Torry and the two guys drove around until we called her and said we were done. They came and picked us up and then the five of us went to Steak 'n Shake to have milkshakes together.

It was so much fun, and so sweet at the same time. So I guess my idea of the perfect date would be a little surprise, a little romance, and a little fun/friends all mixed together. (And flowers - I love getting flowers - hint, hint Tim) :-)

Friday, January 20, 2012

30 Days of Blogging: Day 2

Day 2 - Your Favorite Movie

Oh man, here we go again - I don't know if I can just pick one! I'm a big fan of chick flicks, comedies and the occasional action movie. I don't/can't do horror movies, I'm a huge chicken! I've never been huge into movies, so there aren't a ton of movies that I absolutely love, but here are some of my favorites:

  • A Walk to Remember
  • I Love You, Man (story of my life)
  • Dan In Real Life
  • Big Daddy
  • 27 Dresses
  • Toy Story (the first one is definitely the best)
  • Harry Potter (all) The books are much better, but I do really enjoy the movies

Thursday, January 19, 2012

30 Days of Blogging: Day 1

I saw this on another blog that I read, and since I haven't been posting very much this month, I thought I'd give this a try. I figured it's a nice break from everything always being about me and my CF, instead this will just be about me! :-) I will try my hardest to post one everyday, no guarantees, but I will get them all done eventually.

Day 1 - Your Favorite Song
Day 2 - Your Favorite Movie
Day 3 - Your idea of the perfect first date
Day 4 - Your favorite photograph of your best friend(s)
Day 5 - Talk about your pets
Day 6 - A photo of an animal you'd love to keep as a pet
Day 7 - Your dream wedding
Day 8 - A song to match your mood
Day 9 - A photo of the item you last purchased
Day 10 - A photo of your favorite place to eat
Day 11 - What's in your make-up bag/purse
Day 12 - Your current relationship status
Day 13 - A few of your favorite quotes, mottos, or versus
Day 14 - TV show (or shows) you're currently addicted to
Day 15 - Something you don't leave the house without
Day 16 - Describe a passion you have
Day 17 - How you hope your future will be like
Day 18 - Five things that irritate you
Day 19 - Your reflection in the mirror
Day 20 - The meaning behind your blog name
Day 21 - A photo of something that makes you happy
Day 22 - A letter to someone who has hurt you OR made you happy recently
Day 23 - 15 Facts about you
Day 24 - A photo of something that  means a lot to you
Day 25 - 5 of your favorite movies/books
Day 26 - A photo of somewhere you want to go
Day 27 - What kind of person attracts you?
Day 28 - In this past month, what have you learned?
Day 29 - Something you could never get tired of doing
Day 30 - A photo of yourself plus 3 good things that have happened within the last 30 days

Day 1: Your Favorite Song
It would be very hard for me to just put one song on here as my favorite because I'm always loving different songs and it definitely depends on my mood. The last year or two, I've really been into country music, so I really enjoy a lot of those songs. I would have to say one of my absolute favorite song has to be "The Day Before You" by Rascal Flatts. Here's my favorite part of the lyrics:
Now you're here and everything's changing
Suddenly life means so much
I can't wait to wake up tomorrow
to find out this promise is true
I will never go back to 
The day before you 

Other favorites that I have include: "If I Die Young" by The Band Perry, "I Won't Let Go" and "I'm Moving On" by Rascal Flatts, "Lose Yourself" by Eminem (I know it's definitely not country, but I've always loved this song), "RESPECT" by Aretha Franklin, "Only the Good Die Young" by Billy Joel, "All You Need Is Love" The Beatles, "Ballroom Blitz" by Sweet (a classic rock song that I loved in high school!),  "Mama's Song' by Carrie Underwood, "Born This Way" by Lady Gaga, and "F*ckin' Perfect" by Pink.
Again, I could go on and on listing songs that I love - I'm a huge sucker for adorable/sweet/moving/meaningful lyrics. 

Tuesday, January 10, 2012


I have been going back and forth for a while now on whether or not to have Tim get tested to see if he's a carrier of CF. I didn't want to because, honestly, I was afraid of a positive result. I didn't know if I could handle being a CF parent to a CF child, even though I knew Tim was on board with anything and everything (what an awesome husband I have!).

After many discussions on our own, we decided to go see a Genetic counselor to help us (me) make a decision. We had a wonderful, long discussion where he informed us that if we tried to get pregnant without getting Tim tested, based on Tim's family history/ethnicity, we would have a 1/50 (2%) chance of having a child with CF. I thought I was comfortable with that....then he told us that if we decided to get Tim tested and he was positive (a CF carrier), then we would have a 1/2 (50%) chance of having a child with CF...that sounded a little too risky for me. If we decided to get Tim tested and he was not a CF carrier, then we would have a 1/602 (<1%) chance of having a child with CF, but they would 100% be a carrier of CF.

1/602 sounded a LOT better to me than 1/50, or 1/2, but I knew that 1/2 was a possibility if we decided to get Tim tested. I still couldn't make up my mind, mostly out of fear for that positive result, so we left the genetics office without getting Tim tested. A few weeks and discussions later, Tim and I decided it was the right thing for us to do to get him tested. We went in about a week later and did two cheek swabs at the genetics office and mailed them out to the lab. We were told it would take about a week or so to get the results back. Two weeks after not hearing anything (and the geneticist was amazing, so I knew he wouldn't just forget), I contacted the geneticist to see what was going on. He contacted the lab the same day (told ya he was awesome) and they told him there was an unusually low amount of DNA from the cheek swabs, but they'd still be able to get a result. Well, a week later, they decided that there wasn't enough DNA to get a result, so the test failed.

The geneticist kept us up to speed with everything that was going on, and told us that we can either do another cheek swab test, or Tim could have his blood drawn which would definitely lead to a result. We decided to have Tim get his blood drawn this time to ensure a result. So last Tuesday night, we went back to the genetics office, filled out the paperwork (again) and Tim got his blood drawn. It felt kind of funny being in the waiting room, but not going back to get my blood drawn - usually that's always me - it was weird being on the other side of that for once! :) Again, we were told the results would take about a week.

One week later, today, we got the results back. Tim is not a CF carrier!!!

What does that mean exactly?
*It does not mean that our children will not have CF; there is a tiny chance that they still could get CF if for some reason Tim has some rare mutation that they could not detect from the screening, but there's less than a 1% chance of that happening.

*It also means that our children will be CF carriers. Since I have two mutated genes, and Tim has none, our children will get one mutated copy from me and one non-mutated copy from Tim which will make them carriers.

Saturday, January 7, 2012

Not Off to the Best Start

I've debated for a couple days whether to write about what's been going on with me the past couple days because I didn't want to freak people out (I know a lot of my family reads this), but I figured if I'm going to have a blog about how I live with CF, it has to be the good, the bad and the ugly.

Our new years was pretty uneventful, Tim and I just hung out that weekend and it was back to work on Monday for me. The kids were a little tired, but as the week went on they got a little crazier. Luckily it warmed up to be about 50 degrees (in JANUARY, in northern Illinois = not normal, but welcomed!) on Thursday and Friday so the kids got lots of outside time! Thursday morning I was at work, the kids had just arrived, and my breathing started feeling funny - I felt kind of crackly, but really thin crackles: aka: not going to be mucus when I coughed, it was going to be blood. Now, I've coughed up blood (hemoptysis) before, where it's been mixed in with my mucus (streaking), but only maybe once or twice ever in my life has it been straight blood. This time, it was straight blood and it wasn't staying down. I was trying my hardest not to cough as I'm helping my two little guys write in their journals. Since there were several adults in the room, I excused myself to the staff bathroom and got out what I could. It was pretty scary for me because I've never had this happen like this, let alone at work.

I didn't want to tell anyone at work because I think that would totally freak them out. Luckily, about 30 minutes later and several productive coughs, it subsided, and it just turned into streaking. I knew I had to contact my doctor to let her know what happened because that is not typical CF for me. At work, my lunch is at 10:30 (so about an hour and a half after all of this happened), so I emailed my doctor from my phone (YAY for having a smartphone!). I stayed at work, kept my phone on me and emailed my nurse back and forth a couple times during the day to hash out a plan.

My nurse, Penny, told me to back off of my treatments to once a day for two days (to give my lungs a break), then bump it up to twice a day for two days, then 3-4 times a day if I can (to get it all out). I also started an oral antibiotic, Cipro, for 14 days. So Thursday and Friday I just completed one AM treatment, and as I'm writing this, I'm completing my first treatment of the day today. I usually do my HTS (hypertonic saline - nebulizer med - salt water, pretty much) with my AM treatment, but I opted to do my Pulmozyme yesterday morning as to not irritate my lungs even more. I just finished my first treatment of the day today including HTS, and it went okay. There's still a tiny bit of blood in my mucus, but I think it's starting to get better.

The thing that gets me, is that I've been feeling great lately, and this literally came out of no where! I was sitting at a table, helping my students when I just started randomly coughing up blood - kind of scary. Today, I'm feeling just fine, I don't have any increased cough (not more than usual) or any 'sick' symptoms, so I feel weird having to go on antibiotics and mess around with my treatments, but I know it was definitely a smart move to contact my nurse. I also decided to back off of my exercise for this week, to give my lungs a break, but I'm hoping to pick it up again next week. In the meantime, I need to figure out how I'm going to try to fit in an extra treatment or two starting on Monday. I work til 5:30, so my second treatment isn't going to get done until 6:00, so I guess I'll have to do another one right before I go to bed.

Tim's been giving me crap that I have to start my 100% count all over again because I only did one treatment a day for two days! Haha, yeah right! I'm going to keep it up there because I told him I was just following doctor's orders! :-)

I hoping that within the next week, this will all go away and maybe I'll be feeling even better than I do now with that round of Cipro. I hope I didn't scare anyone - really, I'm fine. :-)