I'm sure people wonder why I would start a blog about life with Cystic Fibrosis, and I have touched a little bit on some of my reasons in earlier posts. In reality, there quite a few reasons to start this. I was talking with my mom the other day, and one of those reasons that I hadn't really thought about before became extremely clear. Through talking with people and hearing the questions that are asked about the disease, I have noticed that the information presented to those who are not affected by CF is very limited and often times, flawed. My mom is a dental hygienist, and she talks to her patients about my sister and I all the time. It is truly amazing how many people ask her how I am doing with my CF, and then follow up with a statement like, "Oh, I'm sure she will get over it soon," or "She will grow out of it." This, of course, is not in any way them being insensitive. It is just an honest lack of understanding of what Cystic Fibrosis truly is. I have also had people ask when I caught CF. There have been times when people were scared that they would catch the disease if they were around a person with it. That isn't common now, but I'm sure it is still out there.
I want my blog to serve as a place to find real life information about Cystic Fibrosis. Most of the stuff on my blog is not about science, but it actually paints a picture of what life is like with CF. I have found that a lot of times, when I tell someone that I have CF, they want to know what it is, but they really want to know what it means to have it. What kinds of medications do I have to use? What worries does having the disease cause? The big question: How long will you live? (Obviously, I don't have the answer to that question, but I know it runs through people's minds.) I have made it my goal to answer those questions and any others that people may have about Cystic Fibrosis, because people need honest answers especially when so many resources portray it inaccurately.
The first example of this that comes to mind is the Grey's Anatomy episode which I wrote about earlier. That is a very popular show that has a lot of influence over it's viewers. The least they could do, was research the material and make it educational as well as entertaining. I found one really surprising inaccurate portrayal of CF in my honors biology text book freshman year of high school. There wasn't much about it, but it did have a little section about the controversy that supposedly surrounds giving CF patients new lungs. The author reported that some people think that it is wrong to give those patients healthy lungs when the lungs will just clog right back up with mucus. Now, I am definitely not an expert on lung transplants, because I have not done a ton of research on it, but it is my understanding that once you get new lungs, they stay clear. The issues and worries come with rejection and catching illnesses. (Please correct me if I am wrong, and add anything that I haven't mentioned if you have anything else.) I was horrified when I read it, because back then, I knew even less about the topic than I do now. I was upset, because I didn't like the idea of going through a transplant, and then just getting right back to how I was. If I was fooled by the information being presented, it is a pretty safe bet that every student who read that section was. I find it very disturbing and sad to know that there were (I'm not sure if those books are still being used) educational text books spreading untrue things about CF to students.
So basically, I want to start to change all of that. I want to offer information to people so that misconceptions are less, and my friends and family can really understand what it is that I live with. If you have any questions or comments, or just want to talk to me about issues with CF, please feel free to email me by clicking here!
Sunday, March 27, 2011
Monday, March 21, 2011
1st Run/Walk
Well, I did it! I did my first run which was mostly walking, but that doesn't matter to me! I actually got up and did it which is a huge step for me! I have added a widget where I will keep you posted on how far I run, how long I run, and how often it takes me. Hopefully, we will see a lot of improvement as I go along. I know there sure is room for some! Thanks for keeping me accountable! :)
Sunday, March 20, 2011
Running
I've been going back and forth for awhile trying to figure out the best form of exercise for me and my health. Obviously, strength training is an important aspect for me, but the most important thing for my lungs is cardio. So what kind of cardio would be best? After reading many other CFers' blogs and comments about working out, I have come to the conclusion that I need to start running. It is one of the most beneficial forms of working out for your lungs, but that raises a few questions. How do I start running? What kind of shoes do I need to get? When will I run? Where will I run? I have found a program that I think will be good for me, but now I just need to find the motivation to start.
That's a difficult thing for me, because I have tried to run in the past. It is painful and challenging, and I usually just give up. My health is at the point now that I cannot give up this time. I need to stick with it and make it work. I plan on starting this week since I only have half days of work which takes away the excuse of not having time to run. I decided to write about it, because if I need to keep you all informed on my progress, it will keep me accountable for actually going out and doing it. Tomorrow will be my first day. We'll see how this goes. Wish me luck!
That's a difficult thing for me, because I have tried to run in the past. It is painful and challenging, and I usually just give up. My health is at the point now that I cannot give up this time. I need to stick with it and make it work. I plan on starting this week since I only have half days of work which takes away the excuse of not having time to run. I decided to write about it, because if I need to keep you all informed on my progress, it will keep me accountable for actually going out and doing it. Tomorrow will be my first day. We'll see how this goes. Wish me luck!
Thursday, March 17, 2011
My Biggest CF Frustration
This post doesn't have much to it, but it is something that has been weighing on my heart and dragging me down lately. Ever since I made the decision to really start fighting Cystic Fibrosis, I have been looking more towards the future and what God might have in store for me. Now, normally, this is an uplifting, inspiring thing for me. I envision teaching in my own classroom, having a child with Eldon, and living life to the fullest. It makes me want to fight even more for those high PFT numbers that seem so out of reach right now.
The problem comes when I start seeing the negative side of the fight. (Before you get too worried, this is not a post about dying. I'm not feeling that blue at the moment.) My greatest frustration caused by Cystic Fibrosis (at least right now) is the fact that no matter how hard I fight, I can never stop fighting. When I make it to my goal, there is no break. I have to keep fighting non-stop or my lung function will go right back down. Then, that takes away what I was working for in the first place. What's more? Even if I keep fighting without faltering even a tiny bit, my numbers will go down eventually. That's the nature of the beast, and it is one of the worst parts of the disease for me. It's times like these that it is hard to motivate myself to continue the fight when I see I'm on the losing side.
It's also times like these that I appreciate everything that I have so much more. I look at my life and see the reasons to continue fighting. I am marrying my best friend in 72 days! I have amazing family and friends, and all of those people make my life worth fighting for!
Just look at all of those people, and there are so many more important people in my life! God has really blessed me with the perfect team to help me fight as long and as hard as I can!
The problem comes when I start seeing the negative side of the fight. (Before you get too worried, this is not a post about dying. I'm not feeling that blue at the moment.) My greatest frustration caused by Cystic Fibrosis (at least right now) is the fact that no matter how hard I fight, I can never stop fighting. When I make it to my goal, there is no break. I have to keep fighting non-stop or my lung function will go right back down. Then, that takes away what I was working for in the first place. What's more? Even if I keep fighting without faltering even a tiny bit, my numbers will go down eventually. That's the nature of the beast, and it is one of the worst parts of the disease for me. It's times like these that it is hard to motivate myself to continue the fight when I see I'm on the losing side.
It's also times like these that I appreciate everything that I have so much more. I look at my life and see the reasons to continue fighting. I am marrying my best friend in 72 days! I have amazing family and friends, and all of those people make my life worth fighting for!
Monday, March 7, 2011
Cystic Fibrosis Loneliness
Cystic Fibrosis is a very lonely disease. Up until a couple of months ago, I only knew a few people who have it. They used to have camps that CF patients could go to where you could meet other kids going through the same thing and enjoy each other's company. I never got the chance to experience one of those camps, because they got rid of them before I was even diagnosed. Why? Due to our thicker, stickier mucus, people with CF are much more likely to get "bugs" or bacteria growing in the lungs. Those bugs can make anyone sick, but to a CFer, they can be deadly. Doctors decided that CF camps were too risky, because if one person had a bad bacteria, it could spread like wildfire, making a lot of people sick.
If you are a Grey's Anatomy fan, you might have seen the episode a few weeks ago that touched on this subject. Long story short, two CF patients were at the hospital. The man was there for a lung transplant. When the doctors found out that the girlfriend had Cystic Fibrosis as well, they told him they had to break up, or he could not have the lungs. That episode has been a huge topic of discussion around the CF community. I won't go into all the points put forth, but I will say that it was very unrealistic. First of all, lung transplants are major procedures, and they make sure you have a major support system before you can even be put on the list. There is no way a transplant doctor would make the guy's only supporter leave right before the surgery. Second, I don't believe that anyone can give you an ultimatum like that... doctor or not. I'm interested in what you all think about the subject. If you have anything to add, please leave a comment!
If you are a Grey's Anatomy fan, you might have seen the episode a few weeks ago that touched on this subject. Long story short, two CF patients were at the hospital. The man was there for a lung transplant. When the doctors found out that the girlfriend had Cystic Fibrosis as well, they told him they had to break up, or he could not have the lungs. That episode has been a huge topic of discussion around the CF community. I won't go into all the points put forth, but I will say that it was very unrealistic. First of all, lung transplants are major procedures, and they make sure you have a major support system before you can even be put on the list. There is no way a transplant doctor would make the guy's only supporter leave right before the surgery. Second, I don't believe that anyone can give you an ultimatum like that... doctor or not. I'm interested in what you all think about the subject. If you have anything to add, please leave a comment!
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!
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.
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.
Subscribe to:
Posts (Atom)