Friday, February 25, 2011

This is what your donations are going towards...

This week, the Cystic Fibrosis Foundation made an exciting announcement. A new CF medication has just made it through Phase 3 of research which is the last stage before trying to get it approved by the FDA. The results were very positive, and give all of us hope that there is more of this kind of treatment to come. I should point out that there are many different gene mutations of CF, and the one that this medication is used to treat affects about 4% of those with the disease. I am not one of those 4%, but this still gives me a lot of hope for what is to come. I am very excited for those who will benefit from this particular medication! Our prayers are being answered, and your money is being used wisely! Here is the article from Cystic Fibrosis Foundation:

Phase 3 Study of VX-770 Shows Positive Results

February 23, 2011

The Cystic Fibrosis Foundation and Vertex Pharmaceuticals announced today that VX-770, an oral medicine in development that targets the defective protein that causes cystic fibrosis, showed promising results in a Phase 3 clinical trial.

The trial was designed to evaluate patients age 12 and up who carry at least one copy of a CF mutation called G551D. The study included 161 patients who received at least one dose of VX-770 or placebo.

Patients who took the drug, compared to those on placebo, showed a marked improvement in lung function at 24 weeks, which was sustained for the duration of the 48-week trial.

Patients also showed improvement across all key secondary endpoints in the study, including reduced likelihood of experiencing a pulmonary exacerbation, decreased respiratory symptoms and improved weight gain. Each of these areas is critically important to the health of people with CF.

In addition, average sweat chloride levels of patients on VX-770 dropped toward normal levels, while those on placebo did not change — indicating the drug is impacting the underlying defect in CF. Excessive sweat chloride (salt) is a key clinical indicator of CF.

VX-770 is being developed by Vertex, and was discovered in collaboration with the CF Foundation, which provided substantial support to Vertex throughout the development process, including an approximately $75 million investment.

About four percent of people with CF carry the G551D mutation. More studies are needed to determine whether other CF mutations may benefit from VX-770.

“These results are highly encouraging. They provide scientific evidence that support our long-standing belief that targeting the underlying defect of CF may have a profound effect on the disease,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “We have much more to do to end the suffering caused by this disease, but these data are extremely exciting, especially for people with the G551D mutation and their families. The results also offer significant hope that a similar approach to treatment may help the majority of patients living with CF.”

The Phase 3 data support Vertex’s plan to submit a New Drug Application for VX-770 to the U.S. Food and Drug Administration (FDA) in the second half of 2011. Generally, the FDA takes between 6 and 12 months to review and rule on a drug application.

“The Cystic Fibrosis Foundation has played an instrumental role in our more than 10-year effort to discover and develop potential new CF medicines such as VX-770,” said Matthew W. Emmens, chairman, president and CEO of Vertex. “The data announced today reflect a significant investment of time, dollars and scientific expertise from both Vertex and the CF Foundation, and we look forward to working closely with the Foundation as we seek to bring VX-770 to people with CF.”

Said Preston W. Campbell III, M.D., executive vice president for medical affairs of the Cystic Fibrosis Foundation:  “As a physician who has treated CF patients for many years, the VX-770 results are more than just numbers — they represent hope.” He added, “It’s not surprising that patients felt better on the drug because of the magnitude of lung function improvement and weight gain. These are important clinical outcomes, and the fact they were maintained through 48 weeks is very encouraging.”

For even more information on the trial and VX-770 go to the Cystic Fibrosis Foundation website. They have more links with more resources.

To do your part in finding new treatments, just click here. Thank you so much for all that you do!

Thursday, February 24, 2011

The pressure is on to find a teaching job...

I graduated last May with my degree in teaching grades K-6. I searched and searched all summer long for a teaching job but quickly learned that it is all about who you know. I am not from Murfreesboro originally, so those people who have been here their whole lives scooped up the available positions quickly. Where did that leave me?  With no teaching job and no benefits of a full time job. Now don't get me wrong, I love love love the job that I am at right now. I do ABA therapy with children who have special needs, mainly Autism. The only problem is that because I have Cystic Fibrosis, I am not someone who can just go out and get health insurance thanks to my "preexisting condition." Therefore, I need a job that offers some good benefits including insurance.

Right now, I am okay insurance wise, because I am still on my parents', and I get to continue that coverage until I'm 26 whether I am married or not. The only problem is that the insurance comes through Dad's job which is once again in jeopardy. Long story short, if the family business goes down, we lose the insurance. So, the pressure is on to find a teaching job for next fall. Any advice on how to snatch one up? Because clearly, my techniques are not that effective. 

Monday, February 21, 2011

I am so blessed!

Wow! I feel so blessed right now. As most of you know, I started fund raising for the Great Strides walkathon last month. I sent out a message to all of my friends on Facebook including people who I haven't talked to since elementary school. I did not really expect a huge response, but my friends came to my aid with flying colors! I made my goal $1000, and I was not even sure that I would be able to get that much. It has only been a month since I asked for donations, and I am already very close to hitting my goal! Through my Great Strides website, I have received $660! I also have two checks that were sent to me; one for $100 and one for $50! That brings my total to $810!!! That is absolutely incredible!

To those of you who have donated, thank you so much! I cannot tell you how much I appreciate your help. Also, be expecting a thank you note with a total amount that my team raised in May! I am blown away by my friends' generosity!

If you are interested in making a donation, just click here. Thank you so much for your help, and please know that no amount is too small! Almost 90 cents from every dollar go straight to funding the research that will find new treatments and maybe one day, a cure.

Saturday, February 19, 2011

Video About CF and What It Is

This video might seem boring, but it does a good job of explaining exactly what Cystic Fibrosis does in a way that is easy to understand. So if you are interested in learning a little more about it, enjoy!

Friday, February 18, 2011

Immature Choices

I mentioned in one of my earlier posts that during college, I slacked off when it came to taking care of myself and taking my medications. I think that "slacked off" might be the light way of putting things. The truth is, there were many times that I did nothing at all--no treatments and very little exercise (just enough to walk from class to class). The question quickly arises--Why? Why would I want to screw up the good health that I had?

I was full of reasons for what I was doing, but as I sit here and write this, I see how silly some were. Here is a list of reasons/excuses for not taking care of myself:

1. Lack of motivation- It is really difficult to motivate yourself to constantly work at something and see what you think is no result. It is hard to wrap your mind around no improvement being a good thing. When I work at something, I want to improve... kind of like, practice makes perfect.

2. Lack of time- I was in college, and my time was already spoken for. I was a Young Life Leader, I had school and work, and I had friends to hang out with. Who wants to sit at home when your friends are taking a 2 1/2 - 3 hour drive to Jackson, TN just to get some sushi? I know I didn't! (That was my freshman year of college.)

3. Control- I was still in the mindset that if I want to live life without Cystic Fibrosis controlling me, I have to ignore it. If I am constantly missing out on things because of my treatments, I am letting them control me.

4. Hiding- I was still hiding my CF from a lot of the people that I knew. I thought that it would scare people away, and I wanted to find a group of friends so badly that I was not willing to take the chance. If I was always in my dorm room doing treatments, my new friends would start to notice. At the time, it didn't seem like it would be worth the trouble.

5. Independence- This was my first time away from my parents, and while my parents are great and supportive, I had gotten a little sick of them telling me to do my treatments and checking to make sure I actually did them. This was my form of rebellion. I never got into partying and drinking.... just stopped taking care of myself like I should.

There are probably others that I haven't even thought about, but just from those you can see that I was very emotionally driven in my choices. I was immature, and I acted without thinking about the consequences.

Do I regret my choices? Yes and no. I do because of the major hit my health took during my college years. Lung transplant scares really put things into perspective. I don't regret it because if I had not done that, I might not have ever learned the real importance of keeping up with my treatments. Also, when someone with Cystic Fibrosis who is in high school or college asks me advice about treatments and having a life, I can offer some pretty good reasons to stick with it no matter how awful it seems. Plus, now I see more than ever the reasons to be compliant with my treatments! Like I said, it's all about perspective.

Tuesday, February 15, 2011

Boomer Esiason Foundation Video

Here is a video that Boomer shared with parents, doctors, and loved ones of those with Cystic Fibrosis at the CF Family Day on Saturday. Unfortunately, because of the risk of spreading illnesses, people who have Cystic Fibrosis were not able to attend. Jerry Cahill, the man I mentioned in my earlier post about the Valentines Day fundraiser also spoke at this event. This video makes me cry when I watch it, because it inspires me to keep living without letting CF take my dreams away from me. I know it is kind of long, but I promise it's worth it.

Boomer Esiason Wants You to Take GREAT STRIDES for Cystic Fibrosis

Monday, February 14, 2011

Valentine's Day Cystic Fibrosis Benefit

Saturday night, I got the privilege to attend a dinner that is put on every year to raise money for Cystic Fibrosis. It is always beautiful and fancy, and this time was no exception. The evening opened up with hors d'oeurves and a silent auction. The amount of items up for auction was amazing, and they ranged from kids toys to hammocks. Boomer Esiason and Jerry Cahill were the guest speakers. Many of you know who Boomer is, but for those of you who don't, he is an ex-football player. He was a quarterback for the Cincinnati Bengals, the New York Jets, and the Arizona Cardinals. His son, Gunnar was diagnosed with Cystic Fibrosis the same year I was diagnosed. Jerry Cahill is a 54 year old Cystic Fibrosis patient. He has not had a lung transplant yet, and he is a runner...very impressive and inspirational. Unfortunately, Jerry was not able to speak, because he wasn't feeling well. Boomer was a fantastic speaker, and he told a couple of stories about his son and how they deal with CF. I also got to meet Boomer, and he signed the Sports Illustrated article about him and his son that I had.
He's also really tall! ha! He got the name Boomer because he is big and loud! :)

This is a picture of the man who was my Cystic Fibrosis doctor from the time that I was 6 years old until 21 years old, Dr. Rogers.
 Overall, it was a great night, and they raised a lot of money. After all of the talking was over, they had a live auction. The first dance with Boomer went for $1700!!! That is great, and obviously, I was not the one who got that... I'm way too broke! It was a blessing to see people giving so generously and to hear how CF has affected other people.

Monday, February 7, 2011

Lung Transplant Scare

Back on August 30, 2010, I had an appointment with my CF doctor. My Pulmonary Function Test (PFT) showed that my lung function was down to 32% which is a number that told my doctor I would be needing a lung transplant sooner rather than later. That day, the future I thought I wouldn't need to worry about for years all of the sudden came crashing into view. UT set us up with Vanderbilt's transplant center for me to have the first stage of the lung transplant evaluation. Only problem was the appointment wasn't until October 28. That was a long time filled with me fearing for my life.

I was terrified about what was to come. First of all, it meant that Eldon and I would almost definitely not be able to ever have a child of our own. My plan for the future became much shorter... I didn't know how much time I would have left. Eldon and I had quite a few serious conversations during that time. In one of those conversations, I gave Eldon an out. This was our first real picture of what our future holds, and it is going to be difficult to say the least. Eldon did not take my out. He said that he was in this, and he was not going to leave. (I love him! ) So, I began to work... I did extra breathing treatments and began working out again. I was determined not to need a transplant yet.

October 28 finally rolled around, and as we walked into the waiting room at Vanderbilt, I was literally shaking. When they took my heart rate, I think it was somewhere around 120. I was so nervous because I didn't know if my all my work was going to pay off or make any difference at all. I did my PFT, and my percentage went up to 59%! I felt as if I were dreaming! It was an amazing moment when later in the appointment, the doctor told me that my numbers were way to high to even be evaluated for a transplant!

Since then, my numbers have been hovering in the 50% range, but I have set a pretty high goal for myself. I know that if I have any hope of having a child with Eldon, I really need to be in the best physical condition possible. So, I'm starting to get to work on that right now. I have no idea if my goal is physically possible, but by my next appointment (April 20), I want my lung function to hit 70%. I know that is a really high bar, but I need that in order to motivate myself to keep working at it. We'll see how high I can get my numbers.... and keep them. (I'll keep you posted)