Monday, December 26, 2011

Christmas

It's been awhile since I have written anything because things got really busy rather quickly. Christmas was amazing! It was definitely the best one I have had in awhile. I feel so blessed to have such wonderful family and friends to see and spend time with during the holidays! We spent Christmas weekend in Knoxville with family, and it couldn't have been better! I came back home tonight to work tomorrow through Thursday. Then it is back to Knoxville for more time with friends and family! :)

I was kind of dreading coming back to our apartment without my husband and without my pets, but luckily, my sister decided to come with me so I won't get lonely! We have been talking about what our New Year's resolutions are going to be for this year, and I am so excited about the goals I am setting for myself! There are many good things to come in 2012! I will be posting some of my goals on here once the new year comes so that you can help keep me accountable. 2012 is going to be a good year!

Sunday, December 11, 2011

Justice?

I am writing today about something that has nothing to do with my CF. It is something that I feel strongly about, and I feel the need to share it with you all.

Channon Gail Christian, 21, and Hugh Christopher Newsom, Jr., 23, were a couple from Knoxville, Tennessee. They were both raped, tortured and murdered after being kidnapped early on the morning of January 7, 2007. Their vehicle had been carjacked. Five suspects were arrested and charged in the case. The grand jury indicted four of the suspects on counts of murder, robbery, kidnapping, rape and theft. Three of those arrested, Letalvis D. Cobbins, Lemaricus Davidson and George Thomas, have been convicted on multiple charges including several counts of felony murder. After a jury trial Lemaricus Davidson was sentenced to death by lethal injection and Letalvis Cobbins and George Thomas were sentenced to life in prison without the possibility of parole. Vanessa Coleman has been convicted of facilitating the crimes and sentenced to 53 years in prison, and Eric Dewayne Boyd has been convicted of federal charges as accessory after the fact to carjacking and sentenced to 18 years in prison.

On December 1st, 2011, new trials were granted to the defendants due to drug abuse by the presiding Judge.

Chris was my nieces' uncle. I never had the opportunity to meet him, but from what I hear, he was a wonderful person. His life was ended way too soon in a horrific way. What they went through is something that no one should ever have to experience. Their families got justice, and now the justice system is taking that away and making them go through those trials all over again.There is a petition going to try to prevent this retrial. I don't know if it will help, but it can't hurt to try right?

Here is the link to the petition:
http://www.change.org/petitions/governor-of-tennessee-stop-the-retrial-for-murderers-of-channon-christian-and-chris-newsom

Sunday, December 4, 2011

Running/Working out

I bought myself a treadmill with the birthday money I got this year. We finally got it set up tonight, and I put it to work right away. I ran a full mile which is something that I haven't done in years. Mind you, it was the slowest I have ever run a mile, but you have to start somewhere right? After I finished the mile, I walked at an incline for ten minutes just to get my legs extra mad at me. Next, I walked for 5 more minutes just to cool off. It felt pretty good to actually run, but I know there is a lot of room for improvement.

So what's the plan? I am going to use my treadmill everyday. I might not run on it everyday, but I will definitely walk on it. I also plan on continuing with my other workouts which I have been slacking on lately. Picking them back up tomorrow, and I couldn't be more excited! I am super pumped about being able to run a mile nonstop today, and I can't wait to see how far I can push myself. More than that, I can't wait to see what all of my hard work does for my PFT numbers. As you may recall, my goal for my next appointment is to have my FEV1 hit 60%. If you are interested in what my numbers have been in the past, click here. February 1st will be the moment of truth.

In other news, my vest is not working properly anymore. It inflates all the way, and when I push the button to get it to start shaking, it deflates and has very little pressure. That makes it pretty much pointless, and of course, the company is closed on the weekends, so I have to call them tomorrow to find out what are game plan will be. I'm frustrated since I am actually doing what I am supposed to now. Just my luck that it would pick now to mess up. At least I have running to do now so that I am getting some airway clearance. Hopefully, I can get  a new one soon

Friday, November 18, 2011

Birthday Goodness

Wednesday was my birthday, and I am now 24 years old. There was a time when that was almost unheard of for someone who has Cystic Fibrosis. Amazing how times have changed. I have been working extremely hard to make myself as healthy as possible, and I have a lot of room for improvement. I have plans to live a long life and to have a family of my own. Neither of those things will happen if I don't work my butt off to keep my health up, so that is what I'm doing. I am on day 18 of 100% compliance with my treatments and medications. I have missed a few days of P90X, but I haven't quit. I am picking it back up where I left off so that I don't actually miss the workouts. I have also bought myself a treadmill. I figured, if I am really ever going to run daily, I am much more likely to do it if it is in the room down the hall. I will be bringing it home sometime next week, and I plan on  putting it to good use! And once that starts happening, you can be sure that I will be keeping my daily mile updated regularly so that you all can see what I am doing. All this to say.... I want to have a lot more birthdays!!!

My birthday was truly wonderful though. I had to work, but I really enjoy my coworkers and the children we work with which makes it much more enjoyable. I came home from work to my husband with a cake that he baked himself (his first ever). It was so sweet and really tasty. He was so proud of himself! I don't know how I got so lucky as to find someone as sweet and wonderful as Eldon! My day was filled with calls and messages from friends and family. I just feel so blessed to have so many wonderful people in my life! I will be celebrating with my family over Thanksgiving when I go back home to Knoxville. I can't wait to see everybody!

Well, Happy Friday Everybody! Here's to doing treatments, working out, and hopefully many more birthdays! :)

Tuesday, November 15, 2011

Job Interview

After almost 2 years of applying for teaching positions, I had kind of lost hope of ever getting a job. Well, last week, I applied for a job like I always do with no hope of getting it. They called me the next day to set up an appointment for an interview. It was last Friday, and I think it went well, but I guess I will find out. Whether I get the job or not, I realized something really important. I have been applying for every job possible for close to 2 years with nothing... not even an interview. I started being 100% compliant with my treatments and medications October 31st. A little over a week later, I get a call for an interview. Coincidence??? I somehow don't think so. I truly believe that God was just waiting on me to figure out how to take care of myself before He would give me the opportunity to have a teaching job. I have to say that I am thankful for that, because if I had gotten a teaching job right after graduating from college, I can say with 95% certainty that my health would have steadily declined. I finally have my stuff together, so the next step is a job. Then... after that, who knows? Anyways, thoughts and prayers would be greatly appreciated, because this job would be really pretty perfect for me. The interviewing process for this job should be finished by the end of this week. I will keep you all posted when I find something out.

And to go along with this news, I have been compliant for 16 days now! :) One step at a time.

Monday, November 7, 2011

New features on my blog

Some of you may have already noticed, but I have added a few things to my page. If you look at the top, there are now a few tabs and there may be some more added in the near future. There is now a tab for my health stats where I will be keeping track of my pulmonary function test results so that you all can see where my numbers used to be, where they are now, and what progress I am making. The other tab is about 100% compliance. There is a clock on this page that is keeping track of how long it has been since I have missed any treatments or medications. In the past, I would miss a vitamin here or a treatment there, but that is coming to an end now. Both of these ideas were inspired by a fellow Cyster (female with Cystic Fibrosis). She has incorporated these things into her blog, and I thought it was a great idea. I'm looking forward to sharing this process of really trying to better myself and my health with you all. My goal for my next clinic visit is to get my FEV1 up to 60%. That is February 1st, so I have plenty of time to really work on it.  Happy Monday everyone! Hope your week is wonderful!

Monday, October 31, 2011

A Day in the Life

I was looking through my old blogs, and I realized that I have never done a post about what my day looks like with all of my medications and treatments. I feel like it is important to share that with everyone, because for someone who does not have CF and has not really been around someone who has it, Cystic Fibrosis can be a very abstract thing. The amount of work that goes into keeping a CF patient healthy is astronomical, and as you read through my day, you have to realize that there are a lot of people who have to do even more than I do. So, let's jump right in. This is a typical day for me:

7:00 am - 1st breathing treatment of the day :
                            5 blows on the Acapella


                            2 puffs of Albuterol
                            The Vest for 20 minutes


                            Hypertonic Saline about 15 minutes (inhaled saline solution..... makes me cough a lot)
                            Pulmozyme (inhaled medication) about 15 minutes
                            Tobi or Cayston depending on the month. I alternate those 2 every month. Right now I'm
                                    on Tobi. Tobi is inhaled and takes 10-15 minutes. Cayston is also inhaled
                                    but only takes about 5 minutes.
                            1 puff of Advair


          *Total of close to an hour if I'm on Tobi and 40 minutes if I'm on Cayston.

8:30 am - I take a Nexium, vitamin, and Azythromycin

8:40 am - leave for work

5:00 pm - get home from work
                If I'm on Cayston, I do my second does of it now.  5 minutes

6:00 pm - workout (an hour or more depending on the workout)

7:00 pm - 2nd vitamin

9:00 pm -  2nd full breathing treatment of the day:
                            5 blows on the Acapella
                            2 puffs of Albuterol
                            The Vest for 20 minutes
                            Hypertonic Saline 15 minutes
                            Tobi or Cayston - Tobi (10-15 minutes) Cayston (5 minutes)
                            1 puff of Advair
           *Total of close to an hour with Tobi and 40 minutes with Cayston

Before bed - 2 squirts of Flonase in each nostril

Every time I eat, I have to take digestive enzymes as well. I take 6 with meals and 4 with snacks.





 Again, I do not have the biggest and longest regimen of those who have CF. Mine is kind of in the middle, but there have definitely been times where I have struggled with spending all the time necessary to do the treatments. That is always a huge struggle for me, because, there is always something I'd rather be doing. I'm working on that though, and it is slowly starting to pay off as I saw last week at my clinic appointment.(FVC went up to 82% from 70%. FEV1 went from 45% to 54%.)  My goal for the next clinic appointment is to get my FEV1 up to 60%. How do I plan on doing that? 100% compliance with my medicines and treatments..... and keeping up my P90X workouts. I will keep you updated on my progress. :)

Thursday, October 27, 2011

New Update

Today was my clinic day.... As most of you know, I have been working pretty hard at trying to get my lung function up. My biggest motivation for doing it is because one day, I want to have a child, and we have decided that we will only do that if I am healthy enough. I'm not even sure what "healthy enough" looks like, but I know that it is higher numbers than I have right now.

Anyways..... drum roll please....... My numbers are now:
FVC 82% and FEV1 54%

That is up from FVC 70% and FEV1 45%

I will take that improvement any day! My next clinic appointment is February 1st. My goal for that one is to have my FEV1 up to 60%. Is it possible? I really don't know, but we will sure find out! :) I've got a lot of hard work ahead of me, but I think I'm up for the challenge!

Tuesday, October 25, 2011

Top 5

For those of you who are not Facebook friends, I decided to post my top 5 Great Strides Team T-shirts on here. Please let me know which one you like best! I'm looking for all the feedback I can get, because coming up with a design and then picking the one I like the most is way difficult! Thanks in advance for you help! :)






Wednesday, October 19, 2011

Exciting Times

So, not that long ago, I posted an article about the new drug that they have been testing that actually treats the cause of CF. Now, that drug only works for about 4% of the CF population, but it is a huge step in the right direction! Today, we got the amazing news that it has been submitted to the FDA for approval!!!! Here is the article:


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.

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.

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.

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.

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.

This article is from the Cystic Fibrosis Foundation's website. You can find more information here:
Vertex Press Release
FAQ's about KALYDECO
FAQ's about the combination of the 2 medicines

Anyways, thought I would share the very exciting news with you all! And by the way, I have very high hopes for the KALYDECO combination with VX-809 because Delta F508 is the mutation that I have.... So let's keep our fingers crossed and our prayers ongoing! :)

Friday, October 14, 2011

Finally!

For years, I have been saying that I was going to design a t-shirt for my Great Strides team, but I have failed time and time again. Well.... 2012 is the year! I have already started designing the shirts, and I have changed my team name to something a little more catchy. We are now Kayla's Krusaders. Here is the first design idea for our shirts.
 
I even added a little advertisement for my blog. :) I chose lime green for one purpose.... it stands out. You notice a shirt that bright. The ribbon and the rose are purple because in the US, that is the color of the CF Awareness ribbon. The rose on the back has two meanings. It is for the nickname that has been given to CF which is Sixty-five Roses. That came about because Cystic Fibrosis is such a difficult thing to say for young children. The second is that Rose is my maiden name making roses a big symbol in my life! Let me know what you think. 

And now there is a new one in the mix that my husband just designed. It has a nice UT feel, and I'm kind of liking it a lot. Decisions, decisions, decisions.

Happy Friday everyone!

Tuesday, October 11, 2011

The Countdown Is On

As you all know, I have been working pretty hard to see some improvement in my lung function. Well, my next opportunity to see if there is any difference in my numbers is October 26th at 1:30. I'm nervous but excited to see how much progress, if any, I am making. That's 14 days from now.

So what is the game plan for the next 2 weeks? I am going to keep up with my workouts, (Plyometrics is tonight after I finish writing this post) and I am going to be 100% compliant with all of my treatments. It has been quite the growing experience committing to these crazy workouts, but hopefully, it will all pay off soon.

On a fun note, here is a fun video from Ellen. It is hilarious! Enjoy! I hope everyone is having a great day!

Tuesday, October 4, 2011

Upcoming CF Fundraisers

Here are a couple of fundraisers in Knoxville that are coming up soon. :) They sound like fun!

Wine on the Water

UT vs. Georgia Tailgate

Thursday, September 29, 2011

Workouts and Outrun CF

Hello all! Wow... it has been a pretty great couple of weeks. I am notorious for saying I'm going to complete some really great workout plan/ running plan, but then I just fizzle out after a few days. Well, last week, I started doing P90X, and I purposely didn't post anything about it because I have tried this workout before. Both times, I made it a few days, and then just decided that I didn't really have time for it. Now, I am almost done with my second week and still going strong. I have learned how to work it into my schedule and still have time for breathing treatments, work, and other things. That is a pretty big challenge, because each workout is at least an hour long. The trick is that I have to do the workout right when I get home from work. Then there is no time to sit and think about how much I do not want to work out. I will say this about the program..... it is kicking my butt, and I love it! I can't wait to see if I can tell the difference in my lung function on October 26!

In other news, Outrun CF is this Saturday! I've got my t-shirt which is orange... Go Vols! :) And I am ready to run. I will be posting pictures from Saturday. It's not too late to join in! Here is a refresher on what it's all about:

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!

Runnersworld.com—Get inspired, find training programs.

So let's raise some awareness for Cystic Fibrosis! 

Friday, September 23, 2011

Motivation

I just wanted to take a few minutes to share a couple of videos of some truly inspiring people. One is a CF patient, and the other is a man who has CF who received a double lung transplant. Watch, and feel inspired! :)





Visit msnbc.com for breaking news, world news, and news about the econo
I'm inspired... How about you? It just proves that you can do anything as long as you put your everything into it. I'm not going to go out and do a triathalon, but I will be putting everything into my workouts and breathing treatments. :) So my message to you today is get out there and do something. Happy Friday everybody!


Sunday, September 11, 2011

Labor Day Weekend and Such...

This is a little late, but better late than never. :) For Labor Day weekend, Eldon and I went back to Knoxville to spend some much needed time with friends and family. We met up with friends both Friday and Saturday and listened to the Tennessee game on the radio with my family. (We don't believe in Pay Per View for a football game.... too expensive. The radio is free!)

On Sunday, Knoxville puts on a huge fireworks show called Boomsday, and it is always awesome! Eldon and I go every year with his family, but this year was a little different due to the weather. We met up for dinner and spent some time with them, but then we went to sit in the rain to watch the show without them. A few friends and my sister sat with us, and it turned out to be a great night even with the rain. Here's a little video of the fireworks set to one of my favorites!

video
Speaking of the weather, it has been really hard on me lately. The drastic change from 100 degree weather and weeks of no rain to 60-70 degree weather and a solid 3 days of rain sent my sinuses into turmoil. I lost my voice and have been going through tissues like nobody's business. Now that the weather has calmed down a little bit, my nose is slowing down, but it has been a week long process. So if it all continues to improve, I am hopefully going to start working out again tomorrow. My next CF clinic appointment is at the end of October, and I have high hopes for my lung function. I've got to keep working at it, or I'm going to be let down. I would love to see 60, but we'll see. I was at 50 in July, so I have set a pretty hefty goal. Wish me luck! :)

Sunday, August 21, 2011

Alone Time

Well, my husband has been gone for a week, and he won't be back until Friday night. Now, I will be the first to tell you that Eldon helps out around the house a ton, but that has never been so obvious as it is now. Normally, first thing in the morning, he will take our dog out and feed the animals while I go through my morning routine to get ready for work. With him not here, I have had to get up earlier in order to fit it all in. I wake up, take Belle out, feed the animals, do my breathing treatment, eat breakfast, get ready for work, pack a lunch, and leave for work. Man am I ready for a helping hand again!

Some goodness has come out of me being alone. I got the urge to start painting and doing other crafty things again. I have always loved doing those things, but I never really made the time for them. Now I have a whole list of projects that I want to do, so I'm pretty excited! Yesterday, I spent 5 hours painting a canvas for one of my best friend's birthday. It was so calming, and I'm ready to go out and get some more canvases to do some more painting! I'll put a picture of the painting up once I have given it to her.... can't ruin the surprise! :)

The point of this post is that even though some good came from Eldon being gone, I am more than ready for him to come home. I miss him a lot, and Friday cannot come soon enough! Happy Sunday everyone!

Friday, August 12, 2011

Out Run CF

This is such a great idea for a way to get those who have Cystic Fibrosis and those who know someone with it to be active and to raise some more awareness! I missed the first Out Run CF, but I have already registered for this one. I couldn't be more excited! I invite all of you to join in! Here is the information that I got off Cysticlife.

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!

Runnersworld.com—Get inspired, find training programs.

Wednesday, August 10, 2011

I Couldn't Resist

So I just couldn't resist putting up a few of the professional pictures from our wedding! We were blessed with such an amazing and perfect day! Who knows... there might be more posted later. All of these pictures were taken by Watson-Studios, and they are fantastic!!!

For starters, we decided to see each other before the wedding. It was such a special moment to be with Eldon and talk about how we were doing and how excited we were. I was emotional, of course, and I ended up crying! :)

Here are a few pictures of our wonderful wedding party!






Some of the pictures we took together before the wedding. 




And now, the ceremony!


And now to the reception! Lots of dancing and fun!






So, I love our pictures, and I love to share them. You will just have to bare with me! :)

Monday, August 8, 2011

Terrible CF Weather

The weather here has been pretty terrible lately. It has been hot and miserable with a lot of air quality alerts which means that when I go outside, I get out of breath walking to the car. Needless to say, working out has not been a priority for me. Now the weather is cooling down, and the air doesn't feel as thick. So the next step is to get back into exercising slowly. I'm thinking my Zumba for Wii may be the first step for me to get back into it. It is good cardio and gets me coughing every time I use it. I'm ready to make sure the next doctor's appointment has even higher numbers than this last one. I have until October 26th to make some progress. Wish me luck!

Sunday, July 31, 2011

Long Overdue

Wow... I guess it has been awhile since I last posted on my blog. Things have been really busy lately. I got married, we moved, and the job search has continued. We are finally getting settled into our new place, and things are starting to slow down. I had a doctor's appointment on Wednesday, and I really didn't have high hopes for my lung function numbers. The weather in Tennessee has been awful lately. The air is hot, humid, and thick making it very difficult to do anything outside. We have hit above 100 degrees multiple times in the last few weeks, and we have had quite a few air quality alerts. Taking all of that into account, I figured my numbers would be down slightly, but they were actually up a tiny bit! I'll take it! :) I'm hoping the weather gets better and more bearable soon so that I can begin working out again. I'll keep you posted on how that goes.

I have a theory that our beach trip the week before had something to do with those numbers being decent. Being in the salty air feels great, and it helps move things around in my lungs. We went with some of Eldon's family, and it was wonderful! The break was much needed.




In other news, I have been really struggling lately with missing my friends. I love all the time I get to spend with Eldon, because he is my best friend and favorite person to hang out with. It has been difficult because most of my close girl friends are not living in the same city as me anymore. I have one in Denver, one moving to Louisiana, one moving to Memphis, one in Kentucky, and one in Knoxville.Oh and I have one that is going to Uganda for a year! I still have a few here, but the numbers are dwindling, so it's been kind of hard to find time to hang out with girls. Right now, it's just a lot of change, but I will get used to being long distance friends. It is just hard right now.

Friday, June 10, 2011

More Exciting News

There is more exciting news for the CF world this week! As I have posted before, there have been some exciting developments when it comes to the way cystic fibrosis is being treated. They have come up with a way to treat the underlying problem in one of the specific genetic mutations of CF that affects about 4% of the CF community.

Now, there is a trial going on involving 2 different medicines including the one mentioned above together to treat those with the Delta F508 gene. (That includes me!) Here is the article that was posted on cff.org.

Phase 2 Study of Two Potential CF Therapies — VX-770 and VX-809 — Shows Promising Results in Patients with Most Common Mutation

June 9, 2011

Vertex Pharmaceuticals Incorporated and the Cystic Fibrosis Foundation today announced promising results from an ongoing Phase 2 study evaluating combinations of VX-770 and VX-809, potential medicines designed to treat the defective protein that causes cystic fibrosis.

The study enrolled 62 people with two copies of the most common CF mutation, known as Delta F508. The trial lasted three weeks. Participants took VX-809 for two weeks, and VX-809 and VX-770 together for a third week.

Patients who took the drug regimen showed a positive change in sweat chloride levels. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The findings suggest that VX-809 and VX-770 together improve function of the defective CF protein, known as CFTR.

“The results of this study represent a milestone in our efforts to expand the use of small molecules to attack the root cause of cystic fibrosis in those with the most common defect,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “These data, while early, provide important new information that validates our approach and supports continued study of a combination-therapy approach to treating the basic defect of cystic fibrosis.”

The CF Foundation worked with Vertex to discover VX-770 and VX-809, and has provided substantial scientific, financial and clinical support throughout the development process, including an approximately $75 million investment.

These positive results support further testing of VX-770 and VX-809 as a combination therapy. Vertex plans to initiate the second part of this Phase 2 study in the fourth quarter of 2011.

In people with the Delta F508 mutation, the defective protein does not move to its proper place at the cell surface. VX-809 is designed to help the protein reach the cell surface, while VX-770 aims to help the protein function more normally once it is at the cell surface.

The defective protein creates a cascade of symptoms, including a buildup of mucus in the airways and other complications that lead to lung damage and ultimately premature death.

The CF Foundation has fueled dramatic improvements in research and care that have significantly changed the prognosis for people with CF. In the 1950s, children with CF usually died before reaching elementary school. Today, people with CF live into their 30s and beyond.

That just proves that all of those donations are being put to use! I am excited about what is to come with the new developments and I am so thankful for those who have donated and made this possible!

Tuesday, June 7, 2011

I'm Married!

Well, it's been awhile! Sorry about that, but it's been a busy couple of weeks. I got married on May 28th to my very best friend, Eldon! The day could not have been more perfect! People kept telling me that I wouldn't remember anything about the wedding; that it would just be a blur, but I have to say that I do remember it! I made it my goal to not get stressed out about anything when it came to the wedding, and I think I did pretty well with that.


We had a groomsman drop out the day before the wedding, and I got some nice, big, purple berry stains on my dress right before the wedding. Those were the biggest mishaps of the day, and I didn't let it get to me. (By the way, baby wipes and Tide-to-go are great at getting stains out of wedding dresses!) Anyways, here are a few pictures from the happiest day of my life.





For the honeymoon, we went to Navarre, Florida which is absolutely beautiful! We had a great time, and we went parasailing which was so fun!


Monday, May 16, 2011

Days 12-16 and Wedding


Honestly, I have a cracking point quite often. There are times that I just need to cry, because I am constantly reminded of how difficult life can be. When I do start feeling sorry for myself, I tend to feel guilty for feeling that way anyways! So, long story short, there is no single cracking point for me. It just happens from time to time. I snap out of it and get back to living and enjoying the life that I have been blessed with. I just have to remember that I have been dealt these cards for a reason, and there are a lot of people who deal with a lot worse. 

Cystic Fibrosis involves way too many big words. Most of those are words I don't even know anything about yet. I tend to only research things as I need to. If I sit around and think about all the bugs I can catch and how sick I might get in the future, I will just get depressed and worried. I don't see the point in all of that. I can tell you that Cystic Fibrosis is a difficult thing for a lot of kids to say which is why a lot of times, you will hear it called 65 Roses. Tobramycin is an antibiotic used to fight infections. Pulmozyme is one that I have mentioned before, and it is one of my inhaled medications. The list of big words could go on, but let's face it, big words are boring! :)

This one doesn't really fit me... so we'll just move on to day 15.

Eldon will be happy to tell you about how many weird things I say or do when I am beyond tired. I can't think of any good examples right now.

Luckily, I haven't had to be admitted to the hospital since 2009! That's awesome, and kind of unheard of in the CF world at my age. I am thankful for it, because the last time I was in the hospital, they had to take blood cultures. For whatever reason, they have to do that in 2 different sticks. Because I had pneumonia, I was dehydrated, and they had a very difficult time even getting any blood from me at all. After poking and digging for what seemed like forever, she finally finished. She turned to put the containers in their places and dropped one shattering the glass and spilling it all over the floor. Oops.... guess we have to try again. I looked like I had been beat with all of my bruises up and down my arms.

The pharmacy is a huge problem for me. First of all, they never have my medications in stock, so I have to make sure that I order them with plenty of time to spare. Lately, the issue has been all of my medications being on back order. So even though I call them in a week or so before I actually need them, I still don't actually get them in time.


On another note, the wedding is in 12 days!!! So many exciting things going on the next couple of weeks. But here is a picture I haven't shared yet. This is what Eldon's groom cake will look like. You can tell that it's definitely his cake. :)




Sunday, May 15, 2011

Days 9, 10, and 11


Well... here is me playing catch up once again. My biggest milestone or challenge go with the same story. When my doctor told me I would need a lung transplant soon, I watched my future slip away from me. I know that if you get a lung transplant, you have a second chance at life, but it is risky and difficult to say the least. I have a lot of plans and goals for my life, and when I thought I was around the corner from being on my death bed, I did not see how I could ever make those things happen. I then decided to turn my life around and push back the need for a transplant. That was my biggest challenge that I am still facing today. Turning around from doing nothing and trying to do all of my treatments was/is really hard. My lung function ended up raising by 20%, and that is my greatest milestone so far! Hopefully, some of those goals I have set for myself will become even bigger and better milestones. We'll see!


I think the cons speak for themselves, but here are a few. Cystic Fibrosis shortens lives. It is shortening mine. CF makes it hard to breathe. I don't know what it is like to take a real breath of air. On hot, humid days like today, it is more difficult for me to go out and do things. The air feels thick in my lungs, and I get out of breath much easier. Because of this disease, I have a pretty terrifying future ahead of me.

Enough about the bad things though. There are so many good things that have come about because of my having CF. The picture says it so well. I really have met a lot of amazing people. I have joined a website filled with people dealing with CF, and I am constantly blown away by the stories of courage and strength. God gave me this challenge for a reason, and I believe that a big part of that is this blog. I have the ability to spread awareness of this disease that affects about 30,000 people in the US and 70,000  worldwide. I have gotten to see the generosity of people in my life. I probably would never notice that side of people without this disease.


I'll be honest about this one... I don't even know what some of those P words are or what they mean, but I can tell you about the ones I do have experience with. Pancreatic enzymes are a huge part of my life. Because of the effect that CF has on the pancreas, my pancreas is unable to release the digestive enzymes that allow your body to digest your food. I take pancreatic enzymes to do that job. I have to take 6 with every meal, and if I don't, let's just say, it's not pretty. It cause a lot of stomach issues for me the next day. Pulmozyme is one of my inhaled medicines. I do it once a day, and it takes about 10-15 minutes to complete. I have been on it since I got diagnosed. Pseudomonas is a bug that many people with Cystic Fibrosis have growing in their lungs. Fortunately, I do not have that right now.

I guess that's all for today. Maybe I'll stay on schedule for the rest of the month with the posts, but my guess is no. :) I hope everyone is having a fantastic day, and again if you have any questions at all for me, feel free to email me HERE.