Thursday, April 21, 2011

Too hopeful????

All of my CF life... since I was 6, I have heard the word cure thrown around, but I never truly thought there would be one. I mean, Cystic Fibrosis is a huge part of my life, and researchers just keep piling on the medicines and treatments I have to do in order to keep myself as healthy as possible. We raise money to find a cure, but in my mind, I have only ever pictured the new treatments that come from the donations. I have never thought that I would see a cure. I did think that if they did find one, it would be long past my time here. I think that by keeping my hopes in check, I was saving myself the disappointment of not seeing a cure.

Now, there is all of this news about the research that is going on, and against my wishes, my hope has sky rocketed. They are saying that they know what my faulty gene does, and they have an idea how to make it work properly. What does that really mean? I don't know. It gives me a lot of hope that maybe I will get to see a cure. It's difficult, because I am excited about what the future holds for those of us with this disease, but then again, I don't want to be let down! And before I got into blogging and CysticLife, I wasn't exposed to all of the new information  as much. Now, I see it everyday, and I can't help but jump for joy anytime good news and my genotype are mentioned in the same sentence. I guess you could say that I have some major mixed feelings on the whole thing. I'm just praying that I will get the privilege to experience what it is like to have a cure.

On the same line of thinking, it makes me want to go crazy raising money for the Cystic Fibrosis Foundation. I made my goal for fundraising $1000. I have raised $785, and I would greatly appreciate it if you made a donation no matter how small! Help me meet my goal! :) Help researchers find a cure or even more treatments! If you would like to donate, just click here. Thank you so much! If you are not in a position to make a donation, prayers are welcome as well! We definitely need them. You can also help just by passing on my story and the link to my donation page. Any help whatsoever is helpful.

Wednesday, April 20, 2011

Could have been worse... could definitely be better

Well, today was the doctor's appointment. I could tell as soon as I started doing my Pulmonary Function Test that it wasn't going as well as I hoped it would. My numbers were slightly down from January. That being said, my doctor was not really worried about it. She said it might be because of the weather and allergies... got to love Tennessee weather. Needless to say, I am disappointed, and I will be working even harder now to get those numbers up.

To explain PFT numbers in very simple terms, I have a predicted amount of air that should be moved when I do the tests. The FVC (Forced Vital Capacity) is the amount of air you can exhale with force after you inhale deeply. FEV1 (Forced Expiratory Volume) is the amount of air you can exhale with force in one breath. The percentages are the percentage of the predicted volume that I could actually move. I have included a history of some of my more recent percentages, so you can kind of see my trend.... Hopefully, we will start seeing some higher numbers.

4/20/2011    FVC: 75%   FEV1: 47%
1/19/2011    FVC: 80%   FEV1: 54%
12/15/2010  FVC: 67%   FEV1: 47%
10/29/2010  FVC: 79%   FEV1: 57%
8/30/2010    FVC: 57%   FEV1: 34%
3/23/2010    FVC: 66%   FEV1: 42%
12/23/2008  FVC: 74%   FEV1: 58%
8/18/2008    FVC: 90%   FEV1: 73%
7/8/2008      FVC: 80%   FEV1: 63%
12/31/2007  FVC: 90%   FEV1: 73%

If you look closely, you will notice that the lowest numbers came around on August 30, 2010. That is the day, that my doctor in Knoxville told me that I would be needing a lung transplant soon. You will also notice that even though my numbers are lower than I would like them to be right now, and they have been bouncing around a bit, they are definitely higher than they were at that point. My goal is to keep it that way as long as I possibly can. My next appointment is July 27th, and I will keep you all posted as to what my numbers are at that time. Thanks for caring about my journey and giving me a reason to share all of this information!

Questions? Email me

Monday, April 18, 2011

A little update

My 3 month checkup at the Cystic Fibrosis Clinic is on Wednesday, and I am already starting to feel a little nervous. I always get worked up before a doctor's appointment. I really want my numbers to be higher this time than they were in January, but I am not sure if they will be. For me, it's like a competition between what my numbers were last time and what they are now. I always want them to be higher! :) We'll see if I can beat my last ones.... I hope so!  I will keep you posted on what they are. Prayers are definitely welcome, because the higher my numbers, the easier life is... no extra medicine or IV antibiotics. I'm all for easy... at least until after the wedding.

Speaking of the wedding... it is only 6 weeks away! Eldon and I are going to figure out what we will be doing for the programs tomorrow! The flowers are finalized. I am setting up a meeting to decide on a cake design. I'm thinking something like this:
Obviously, the colors and the monogram will be different, but I like the overall look of this cake. We are just waiting for more RSVP's to come in so that we can give the caterer a good idea of how much food we need and so I can go ahead and rent some tables and chairs.

Everyone keeps asking me if I am stressed yet, and the answer is not at all. Eldon and I are just so ready to be married. We have been engaged since July 15, 2008. That is way too long to be engaged, and I am just ready to be Kayla Rose English! :)

We did have our first shower at Eldon's family's church a couple of weeks ago. It was fantastic! It was a tool shower, and we got a ton of stuff that we really needed! We are very thankful for all of the people who came and celebrated with us.

Anyways, I hope everyone is having a wonderful day, and hopefully, Wednesday, I will have some good news to post on here!

Thursday, April 7, 2011

New Research Announcement

A couple of months ago, I posted about the new CF treatment that would benefit 4% of the patients with Cystic Fibrosis. Well, the Cystic Fibrosis Foundation just made another exciting announcement. They have now signed on with the same company to make treatments for the Delta F508 gene mutation which is the most common CF mutation (I am one of those). This type of news give me hope that life really might get a little easier for those of us with CF someday. Anyway, here is the article:

CF Foundation Announces Investment to Speed Development of Additional Drugs to Treat the Most Common CF Mutation

April 7, 2011

Today the Cystic Fibrosis Foundation announced the expansion of its collaboration with Vertex Pharmaceuticals for the discovery and development of additional drugs aimed at treating the underlying cause of cystic fibrosis.

The new program will support development of a potential new drug called VX-661, designed to treat people with the most common genetic defect in CF, the Delta F508 mutation. Nearly 90 percent of people with CF in the United States have at least one copy of this mutation.

VX-661 is known as a “corrector” and aims to move the defective CF protein to its proper place at the cell surface. Another corrector, known as VX-809, is already in clinical trials. By developing multiple correctors, the Foundation increases the chances of bringing new therapies to the CF community as quickly as possible.
“This new agreement will further leverage the successful collaboration with Vertex to accelerate the discovery and development of new drugs to treat a wide variety of CF patients,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “Given the recent announcement of promising data of other compounds in the CF pipeline, we’re optimistic that the CF Foundation is on the right path to fundamentally change the treatment of CF by targeting the cause of the disease.”

The Foundation’s investment, which will be up to $75 million over five years, will also expedite the discovery and early development of other new correctors.

“The CF Foundation is widely recognized by doctors, nurses, scientists and those with CF as a driving force in the search for new CF medicines, and we are pleased to further expand our strong collaboration with them,” said Matthew Emmens, chairman, president and chief executive officer of Vertex. “The collaboration announced today underscores our commitment to CF and accelerates our efforts to develop new medicines as quickly as possible for people with the most common type of this disease.”

With the Foundation’s expanded support, Vertex plans to begin a Phase 2 study of VX-661 by the end of 2011 and expects to enroll people with CF who have the Delta F508 mutation.

A Phase 2 clinical trial is underway to test combinations of VX-770 and VX-809 in individuals with two copies of Delta F508 mutation. Data from the first part of this trial is expected in the middle of 2011.

Read the Vertex Pharmaceuticals press release about the announcement.

As always, you can go to the Cystic Fibrosis Foundation website for more information.

To make a contribution to my Great Strides team, just click here. Every little bit is greatly appreciated, and over 90 cents of ever dollar go straight to research. It's worth every penny! :)

Tuesday, April 5, 2011

53 more days left....

Apparently, I have let the updating the blog slip a little bit. I have been crazy busy with going home almost every weekend doing stuff for my wedding. So, instead of doing a post about CF today, I thought I would update you all on how the wedding planning is going! For those of you who don't know, I have been engaged to Eldon since July 15, 2008... 2 years and 4 months. That is a long time to be waiting for a wedding to roll around, and I don't suggest anyone else to do that. Eldon and I are in this awesome place filled with a ton of excitement! It is finally almost here, and we just cannot wait!

So, I have been slowly planning stuff from the beginning. The first thing I bought, was my dress which I am still in love with! Sorry, I won't post a picture of it yet! :) That's a surprise. My wonderful bridesmaids will be wearing light blue dresses. The color is called pool, and it is almost like a Tiffany blue. The flowers are going to be orange. My bouquet will have calla lilies with something extra to add some flair! The bridesmaid bouquets will have orange mini roses and gerbera daisies.

Right now, we are in the process of picking the music ceremony. That is really hard to do, so if anyone has any suggestions for some good Christian music to use in the ceremony, let me know. We are not going to traditional with the music.

The invitations went out on Saturday, and that finally made this whole thing feel real! Hopefully, it will be beautiful and fun, but if it's not, that is okay. I will be married, and that is all that matters to me at this point! Sorry this post was kind of pointless, but wedding stuff is all I have been thinking about lately. So, I thought I would share.