Day 7- School with Cystic Fibrosis

Many parents who have children with Cystic Fibrosis consider keeping their child out of school to lessen the risk of germs being picked up. I totally understand this mindset, but I am so grateful that my parents did not even consider pulling me out of school when I was diagnosed. I loved school! I had friends, I was an honor student, and I just enjoyed being out of the house. The worst part about school for me was the fact that everyday before lunch, I had to go get my digestive enzymes from the office. It wasn't a huge deal, but when I reached high school, it made it difficult to find a seat with my friends. Of course, it didn't help that our school was over crowded and offered very little seating. I stayed active throughout school because of the activities that I participated in. I cheered in middle and high school, and because of that, I also took tumbling lessons. Tumbling is an incredible airway clearance exercise! After high school, I went on to a large university with about 23,000 students. I did well, and graduated last May with a degree in elementary education. My goal is to be in a school for a long time! ha!

Catch up... Days 4, 5, and 6!

Sorry! I'm running behind again! Life has been crazy lately. I'm getting married 3 weeks from tomorrow, I'm looking for a teaching job, and I just found out I'm going to be moving to a different apartment next month! Busy, busy, busy. Anyways, this post is day 4, 5, and 6 of the 31 days of May the Cystic Fibrosis way! Enjoy...

Over the span of my lifetime, there have been many hospitalizations and sicknesses. I have had a few sinus surgeries over the years, but the last one was when I was 10 years old. I have had pneumonia and bronchitis multiple times. When I started college, I became very non compliant with my treatments, and started to become sicker. 2010 was the first year in 3 years that I wasn't hospitalized for pneumonia. Having Cystic Fibrosis greatly increases my risk of picking up little bugs here and there that might be no big deal for the average person. The issue is that for someone with CF, those same bugs could be very serious or even deadly. That being said, I have never put myself in a bubble. I work with children who always have snotty noses and sniffles, but I love them. I could not see myself doing anything else! I love making a difference in children's live whether it puts me in risk of being exposed to germs or not!

People might hate to hear this about CF patients, but for the most part, I can eat whatever I want. I need the extra calories to keep my weight up. It is very difficult to gain weight because our digestive systems don't work well, and our bodies burn so many calories just breathing. Right now, I am not having to go out of my way to gain weight, but as lung function goes down, you have to eat more to keep body weight up. I have to take digestive enzymes with everything that I eat so that my body can digest the food. There are certain foods that are a lot harder on my stomach than others. Super greasy foods like Mexican really tear my stomach up, so I try to steer clear of them. Overall, I try to eat healthy foods while eating a lot of calories. My doctors have said that I need to gain a few pounds in order to really benefit my lung function, but I have to say that right now, I am not actively trying to gain any weight. I have a wedding dress to fit into this month! :)

Clinic... I go to clinic at Vanderbilt in Nashville which is only about 30 minutes away. I just started going there last year when I was told by my doctor in Knoxville that I would need a lung transplant sooner rather than later. Vanderbilt is a transplant center as well as a CF center. When I was a kid, I went to Children's Hospital in Knoxville. I loved my doctors, but clinic was one of my least favorite things because it was an all day trip. You have to talk to the nurse, the doctor, the nutritionist, and on and on and on. It's still a pretty long trip, but I have gotten used to it, so I don't really mind it. I do get nervous before each doctor's appointment now, because I feel like I have to get really great PFT numbers. If I don't, I will be needing a lung transplant... maybe over thinking and worrying myself, but it's what I do! Overall, clinic really isn't bad. However, it is quite the strain on the wallet. My appointment in January was about $3,000! That came out of my parents' pocket because of our $10,000 deductible.

Day 2 and Day 3

So, I'm playing a little bit of catch up, but I just found this 31 Days of May the Cystic Fibrosis thing, so I thought I would go with it, because I think it is a great way to give me ideas for my blog and how to raise some awareness. Here we go...

My first year after I was diagnosed with CF was rather similar to the past year. As you will recall, I was 6 and was relatively healthy. I do remember having to start breathing treatments and having my parents beat on my back. (This was before I got my Vest that does the same type of thing.) For those of you who don't know, the beating on the back is a form of airway clearance. It is supposed to help shake and loosen the mucus that is deep down in the lungs. At first, I thought all of this was pretty cool; that is an attitude that faded away pretty quickly. The biggest issue that I had at that age was that I had to come inside while friends were playing to do my treatments. That became an even bigger issue as I got older and played with neighborhood friends all the time.

I also had to start taking digestive enzymes which I could not swallow. I would sit with them in my mouth until they melted, and I would cry because it was so frustrating. So, my parents would open them up and sprinkle the little beads inside onto my food. I still remember putting them in my applesauce.

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This one is the big one for me and my family. We all know that medicine is expensive, but medications that I have to take knock most of the competition out of the water! I don't know how many pharmacists have given me terrified looks right before they told me the price of my prescription. I think for this one, I will just list some of my medications and what they cost. Let's keep in mind that our insurance also has a $10,000 deductible, so there is a lot that comes straight out of my parents' pocket.

Cayston (28 day supply) is close to $6000
Tobi (28 day supply)- $4300
Creon 24- $2000
Pulmozyme- $1800
Azithromyscin (Zithromax) - $67
Fluticasone Prop (Flonase)- $20
Advair -$290
Nexium - $180
Proair (Albuterol) - $40
Sodium Chloride .9%- $20
Sodium Chloride 10% - $35 (The 2 sodium chlorides are mixed to make hypertonic saline solution)

Those totals are all for just one filling of the prescription. And the total is............. $14,752

Cystic Fibrosis is a very expensive disease, and insurance hates me a lot! :)

Cystic Fibrosis Awareness Month

 

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May is Cystic Fibrosis Awareness month! Some of the CF bloggers that I follow are sharing their diagnosis stories, so I thought I would do the same. I was born November 16, 1987. From the very beginning, I had a lot of digestion problems. I ate and ate and ate, and it just went straight through me every time. My lungs were healthy, because I would not sit still for longer than a minute or two. I had one of those bouncy swings, and Mom tells me all the time that I would constantly sit in there and bounce. She says that I would stay in there for hours at a time.

Because of the healthy lungs, when my parents shared their concerns with my doctor, Cystic Fibrosis was never even mentioned. We went through three pediatricians before Mom found one who listened to her. The others told her she was an overprotective mother who was making a big deal out of nothing. The doctor we stuck with decided to do a sweat test, and sure enough, I was diagnosed with Cystic Fibrosis.

I believe that my parents did a fantastic job transitioning me into this new lifestyle. They never even considered taking me out of school to protect me from germs. They learned right along with me how to do my treatments and how I would have to go about getting my digestive enzymes at school. (I had to go to the office everyday to get them, because students were not allowed to carry medicine. No exceptions.) I cannot express how thankful I am that my parents continued to treat me like a normal child! I think I would have gone crazy if they had tried to put me in a bubble and protect me from every little germ that might be lurking around the corner. My parents allowed me to live my life the way I wanted to, and for that, I will be forever grateful!

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.

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

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!