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


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


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


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.