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! :)
Friday, November 18, 2011
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.
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. :)
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!
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! :)
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! :)
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