Frustrated but full of hope

Well, today was my clinic appointment at Vanderbilt. Many of you know how hard I have been working this summer to make my lung function and weight go up. Today is day 94 of 100% compliance with my treatments, and I started doing Insanity last week. I was hopeful for today's appointment. I really wanted to see my numbers go up, but I did not set a goal for my lung function due to being disappointed the last few times.

My lung function today was at 48% which is about what it was last time. I was definitely frustrated, but I have been told by quite a few people that sometimes, it takes longer for your hard work to actually show up in your numbers. Keeping that in mind, I'm trying not to be too disappointed with the lack of movement. I still maintained my lung function which is good, and I still have hope that I will see improvement in the future.

Here's the exciting news: I have been working really hard on gaining weight.... I gained 8 pounds!!! My doctor was thrilled to see that and encouraged me to gain a few more pounds. He was also very happy to hear how hard I've been working and felt that I might see more improvement in my numbers next time.

He said my lungs sounded great, and that's all I can really ask for! :) We also talked a little about the hope that the new medications that are in trials right now offer. I'm excited to see what the future holds for me.

My plan moving forward is to just keep doing what I'm doing. I'm going to continue working out everyday and being compliant with my treatments. I'm going to put everything I have into my health so that I have no regrets. I have so many regrets from my college years when I completely neglected my health, and I am determined not to have any of those for this time in my life.

Catching Up

This is kind of a catch all post, because I have been ridiculously busy and have completely failed at creating new blog posts. First things first, I started working again on August 5th, and students returned to school August 12th. It was such a crazy feeling seeing my students from last year walking down the hallway to their new 5th grade classrooms. I definitely miss them, but I'm so excited about my new students. They are so energetic and ready to learn, and I can't wait to see what this year holds!

Tennessee has adopted a new set of standards, so I have been busy learning what these standards are and how to begin teaching them. Our county also adopted a new reading series which means that I'm starting reading plans from scratch while trying to figure out all of the new things that offers. With so much change, I've been working extra hard to just learn how to teach the new stuff. Then you have to add on the time I've spent actually planning lessons. It has been crazy, but I love the new challenge! I'm finally starting to get the hang of it, and I'm so happy that I'm no longer a first year teacher. I feel so much more confident this year.

Now I just have to make sure that I stick to my goal of not getting sick this year. I would really rather not get the flu again this year. That was awful! I am doing everything in my power to make sure I don't have a repeat of that. I'm on day 87 of being 100% compliant with my treatments! I also started Insanity on Monday...... It is ridiculously difficult! The warm-up is hard enough, but then you just keep going onto the workout. If that doesn't help my lung function, I don't know what will.

My next clinic appointment is next Wednesday at Vanderbilt. I've decided that I will not be setting a goal for my PFT since the last few times have been huge disappointments. Just for a frame of reference, my last PFT was 49%. As long as it improves a little bit, I will be satisfied. I'm going to continue working hard no matter what my numbers are though, because I have put way too much work into it to give up now!

That's all for now, but I'm going to try to post more often now that I've got a little bit of a schedule going.

Change

Today, as I sat and enjoyed the beach, I realized how much things have changed for me lately. I have been 100% compliant with my treatments for 49 days now! I missed one yesterday due to the long drive down here, but I made it up with an extra treatment today. There was a time not that long ago that I thought it was okay to just take the week off. If I was going to be on vacation, I was going to fully enjoy it. I wouldn't even bring the things needed for my treatments.... My, how times have changed.

The biggest change that I have noticed now that I am being compliant with treatments is how missing one or not being able to do my morning treatment right away affects me. Yesterday, as we were driving to the beach, I noticed that I was coughing more, and it was a wetter, more congested cough than usual. As soon as I did my evening treatment, I felt much better. I can't decide if this is a good thing or bad thing. In one respect, it motivates me to stay compliant with treatments since it makes me feel better. On the other hand, I used to go a week without doing treatments, and I wouldn't feel the consequences of it. It's no secret that my lung function is much lower now than what it used to be, but I'm still determined to keep it as high as I can.

It can sometimes be frustrating to have to prolong going out to the beach to do a breathing treatment, but it's worth it if I can feel as good as possible while enjoying the sun and ocean. :) I think back to college when I basically stopped taking care of the CF part of myself, and I want to kick that version of me. It was so silly, but I'm thankful I came to my senses when I did because I still have a lot of great things happening in my life! I can't erase my past mistakes, but I certainly can learn from them.

Small Update

Since my doctors were not thrilled with my numbers being down at my last clinic appointment, I went on oral antibiotics for two weeks and went in for a follow up PFT on June 17. My FEV1 went up slightly from 47% to 49%. My doctors were still worried about it, but I told them I was feeling fine. Honestly, I just really want to enjoy my summer and not be stressing out about antibiotics and PFT's and numbers. I want to be able to concentrate on my health without putting the pressure of getting the right numbers for my lung function. I did gain 3 pounds during those 2 weeks, and that made my doctors less worried. I guess they figured that if I'm gaining weight, the lung function will follow.

I've been working really hard to make my lungs improve some. Today is the 29th day of not missing any treatments. We went on vacation, and I didn't miss any while I was there. That's a huge deal to me, because there was a time when I wouldn't even take my breathing treatment stuff with me on vacation. It was not the wisest decision, but in my head, it wouldn't matter if I took a week off. Obviously, I have come to my senses, but it did take awhile for that to happen. I'm also getting back into walking... Tonight, I went 3.5 miles. I'm not quite ready for any running, but hopefully, we will be working that into the regimen at some point.

Long story short, I am trying to enjoy every moment of my summer break while taking care of myself and getting the rest that my body needs. My next clinic appointment is August 28th, so I will worry about my numbers at that time. Until then, it's all about just being healthy! :)

Great Strides 2013

Like I pointed out in my last post, I'm a little behind in writing posts. We had our Great Strides walk on May 18th, and it was wonderful! It rained all morning which did not help attendance, but we had fun anyways. The rain pretty much stopped when it was walk time which was much appreciated.

Before the walk, there was a 5k that I participated in. I didn't do much running, but I did finish it in a reasonable amount of time. :) I started the race jogging and finished it the same way.

After the 5k concluded, it was Great Strides time. A few words were said and the walk began. I had so many people there to support me including family and friends! The walk always helps me how much support I really have.

The goal for the walk this year was $130,000, and we are very close to making it to that goal. I still have some money trickling in, but as of right now, my team raised $6,700! We haven't made it to my $7,000 goal, but I'm very proud of what we did!

Walk day was so much fun, and plans are being formed on how to make it even better next year! I can't wait!

Check out my amazing friends and family who came out to share their support! I love them all!

Big Let Down

It has been way too long since I have written a post for the blog. I have many excuses for that, but it doesn't really matter. I'm just going to start playing catch up.... not in the order that events occurred. I'm going to start with yesterday.

I had my clinic appointment at Vanderbilt yesterday, and I went into the appointment feeling great. I just wanted my numbers to improve from February. I'm still trying to get them back to where they were before I got the flu in December. I thought for sure my lung function would be at least slightly better. In February, I was at 50%. On my first attempt, it said 44%. I just stared at the screen dumbfounded. That couldn't be right.... there's no way it went down! At that point, I was just angry, so I went into the second attempt with all the effort I could muster up. 47%.... I was not happy at all. I tried again.... 47% once more. The respiratory therapist asked if I wanted to try again, and being the stubborn person that I am, I of course wanted another chance to make the numbers get to where I wanted them. I put everything into it, and..... 47%.

I couldn't believe it. Why was my lung function down??? I was feeling so good, and I was incredibly frustrated at this point. All of the sudden, I burst into tears. Now, if you know me, you know that I don't cry in public. I don't like people to see me cry, and I don't like people knowing that I'm in pain. It took me a minute, but I pulled it together and went through the rest of the appointment without any more break downs. My doctor decided that I need to do oral antibiotics for two weeks with a follow-up PFT in Knoxville when I'm finished.


After that, I had a really difficult time cheering up and getting back to the positive attitude I try to maintain. I started thinking about things that I normally do a really good job at not thinking about. Some of the possibilities for my future scare me, and those thoughts just kept playing in my head. Working so hard and struggling to get my lung function back after having the flu makes me worry about what it will be like as I get older. After an evening of freaking out, I have banished those thoughts and have turned my attention to getting better. Now that school is out for summer, I have much more time to spend on my health. I'll be doing extra breathing treatments and steering clear of stress. :)

Other updates from my clinic appointment include the fact that I have once again lost weight. I lost 5 pounds, and I am now down to 108 lb. I also had the privilege of doing my yearly glucose tolerance test which I still don't have the results of. Looks like my summer is going to be filled with breathing treatments, exercise, and eating a ton of food. We shall see how it goes!

May is coming quickly!

It has been quite awhile since I last posted in the blog, and I apologize for that. I have been getting my students ready for TCAP, and that alone, has been taking up all of my time. When I was still a student learning how to teach, I always thought it was strange that the standardized tests make teachers so nervous and stressed out..... It turns out, they are very stressful as a teacher! :) There is just way too much pressure on teachers and students for the students to do well. I'm sure my students will do fine though, and I'm looking forward to the tests being finished. We test everyday for the rest of this week. Next week will be such a relief!


I also received my 2013 Kayla's Krusaders shirts in the mail! They look fantastic, and my team seems to really like them. :) I could not be more excited about the Great Strides walk this year! My team is probably doubled in size, and the walk is going to be in a much better location. As the chairperson for the walk this year, I have been able to get previews of what the walk is going to look like. There are so many new, exciting things being implemented.

Speaking of my team, the reason it has doubled in size is because of my amazing work family! At least 30 people that I work with at the school ordered a shirt and are planning on walking on May 18! We all wore our shirts on Friday, and it was such an amazing feeling seeing all of those people showing their support for me and my cause. The students even got in on the act, because they were so curious about why all the teachers were wearing a shirt with my name on it. I explained to them what I have and what that means. They were so sweet with expressing their concerns and questions about the disease. Many of them have said they want to attend the walk as well. I cannot express how much I love my job!

Amazing co-workers!

The walk is on May 18th, and there is a 5K called the Pajama 5K benefiting CF that morning as well. I plan on participating in the race, and my goal is to run the whole thing. It's a hefty goal for me, but I think I can do it! School then ends the next week for summer which blows my mind! I feel like the year has been so short and fast. My clinic appointment is the week after that on May 29th, and I have set the goal of my FEV1 being 60%. As you may recall, my lung function took a huge hit when I came down with the flu in December. It dropped from 53% to 40%. At my last appointment, I had gotten it back up to 50%, but I am stubborn and will not be satisfied with that. I'm working hard by doing my treatments and exercising. One can only hope that I will see a difference!

One final piece of news: Vertex released information about Phase 2 of VX-661, one of the drug combinations that is being tested for those of us with DeltaF508 (the most common CF mutation). The trial has shown significant improvement in lung function! That's the kind of news I like to hear! I hope and pray that things keep going the way they are and the news stays positive! I have high hopes for the future!

Happy Monday!

Fundraising

I have officially starting raising money for the Great Strides walk on May 18th. This will be the 19th year that my family has participated, and I'm hoping it will be the best one yet. I have set a goal of $7,000 for my team, but I really think we can beat that. If you would like to make a donation tot he Cystic Fibrosis Foundation, just click on the Great Strides link in the top left corner of this page.

I'm also selling tshirts again this year. If you are interested in ordering one, just let me know. They are $20 a piece.

Pushing us into Bubbles

The Cystic Fibrosis Foundation has now come out with new infection control regulations. There have been regulations in place for quite some time now, but they are getting more strict more frequently. Many people have seen the episode of Grey's Anatomy where there was a couple who both had CF. The man was needing a lung transplant, but his doctor said she wouldn't do it unless he and his girlfriend broke up and stayed away from each other because of the fear of getting each other sick. While a doctor would never do that, those of us with CF have been told to stay away from each other. There is a greater possibility of us catching some horrible bacteria from each other that can make us sick. With that being said, I believe there is a line between being safe and telling us to live in a bubble. Here is the email I received today from the foundation laying out the new rules and regulations.
 

We are writing to let you know that the Cystic Fibrosis Foundation recently implemented a new infection prevention and control policy for all Foundation events, meetings and offices to protect the health of people with CF. We took this step based on increasing medical evidence that the risk of people with CF spreading destructive germs to one another is greater than was previously thought. Our new policy reflects the advice of leading medical experts on this subject.

The health and well-being of people with CF is our topmost concern — it is at the heart of all we do. We have long had infection control guidelines in place to promote the safety of people with CF. With this new policy, we are acting proactively and immediately to reduce the risk of cross-infection among people with CF. 

The key elements of the Foundation’s new policy are:

• At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
• At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
• Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices.  

Now let me begin by saying that I do understand why they are doing this, but I believe they have taken it a step too far. The regulation that I have a big issue with is the first one on the list. Just this month, I got the opportunity to speak at Martinis and Movies with another young woman who has CF. Now, that is not possible. We raised $14,000 by speaking at that event. Now we can't join forces to try to raise money. If I ever speak at an event inside like I eventually would love to start doing, no person with CF will be there to hear me. Likewise, if someone else with CF is speaking, I won't be able to go hear what they have to say.

My parents did not raise me to live in a bubble. They encouraged me to follow my dreams and to live my life the way I wanted. Never was I told I could not do something because of cystic fibrosis. That is why I have such a hard time accepting this. There is a way to keep us safe without secluding us even further. CF is already a lonely disease.  I don't want to live in a bubble. I want to be able to participate in all of events.... that should be part of my rights as a CF patient.

I guess I just have to accept it and deal with it, because I doubt the foundation will be changing its mind. It's just sad and disheartening that we get pushed further and further away from the only people who can really understand the difficulties that we go through every day with this disease. At least we have social media... without that, I would never be able to get to know anyone else dealing with the things I deal with.

Frustrated

There really isn't much new to report in my life, but I did need to vent slightly about insurance. This week, I called in my refill for Pulmozyme (one of my breathing treatment medications). I still had a few days worth of medicine left which would give the pharmacy time to get in stock since they very rarely have the medications I need available. I received a "courtesy call" from the lovely automated pharmacy woman informing me that there would be a delay on my refill. I assumed that meant they were having trouble getting it delivered and chose to wait it out.


I ran out of the medication yesterday and decided to call the pharmacy to figure out what in the world was going on. The man I talked to was very nice as he informed me that my insurance was refusing to cover the medication because they believed that I didn't need it. Let me say that I have been on this particular medication since I was diagnosed at six years old. Not to mention, I have cystic fibrosis, a lung disease, and Pulmozyme is a breathing (lung) medication. To say the least, I was extremely frustrated with the whole situation. What is the point of having insurance if they aren't going to help you when you need it?

I called my CF clinic at Vanderbilt and got the CF nurse on the job. She called the pharmacy and the insurance company and discovered that they would only cover my prescription if it is ordered from a certain pharmacy because they get a discount. (Pulmozyme is not cheap by any stretch of the imagination.) My doctor sent the prescription to that particular pharmacy, and I gave them a call. The woman told me that they would be getting in touch with me as soon as they had it in their system. Time keeps ticking away, and I have yet to hear from them about receiving my prescription. The cherry on top of it all is that it is a mail order pharmacy meaning that it may take longer to get my medicine.

Enough with the negative for the day though! I am on day 19 of being compliant with my treatments (minus Pulmozyme today). Yesterday, we had the Great Strides kickoff, and it was fantastic to get to meet some of the parents who have younger children with cystic fibrosis. Because CF is a lonely disease, I have found that I really don't know many of the people in my own community who are dealing with the same things I am. I am so thankful to be in the position to meet with and hopefully, inspire these younger families taking on the cystic fibrosis battle.

On that note, Happy Friday! Enjoy the weekend! We are supposed to have warm weather, and I intend to spend some good, quality time outside in the sun! :)