Monday, May 16, 2011

Days 12-16 and Wedding

Honestly, I have a cracking point quite often. There are times that I just need to cry, because I am constantly reminded of how difficult life can be. When I do start feeling sorry for myself, I tend to feel guilty for feeling that way anyways! So, long story short, there is no single cracking point for me. It just happens from time to time. I snap out of it and get back to living and enjoying the life that I have been blessed with. I just have to remember that I have been dealt these cards for a reason, and there are a lot of people who deal with a lot worse. 

Cystic Fibrosis involves way too many big words. Most of those are words I don't even know anything about yet. I tend to only research things as I need to. If I sit around and think about all the bugs I can catch and how sick I might get in the future, I will just get depressed and worried. I don't see the point in all of that. I can tell you that Cystic Fibrosis is a difficult thing for a lot of kids to say which is why a lot of times, you will hear it called 65 Roses. Tobramycin is an antibiotic used to fight infections. Pulmozyme is one that I have mentioned before, and it is one of my inhaled medications. The list of big words could go on, but let's face it, big words are boring! :)

This one doesn't really fit me... so we'll just move on to day 15.

Eldon will be happy to tell you about how many weird things I say or do when I am beyond tired. I can't think of any good examples right now.

Luckily, I haven't had to be admitted to the hospital since 2009! That's awesome, and kind of unheard of in the CF world at my age. I am thankful for it, because the last time I was in the hospital, they had to take blood cultures. For whatever reason, they have to do that in 2 different sticks. Because I had pneumonia, I was dehydrated, and they had a very difficult time even getting any blood from me at all. After poking and digging for what seemed like forever, she finally finished. She turned to put the containers in their places and dropped one shattering the glass and spilling it all over the floor. Oops.... guess we have to try again. I looked like I had been beat with all of my bruises up and down my arms.

The pharmacy is a huge problem for me. First of all, they never have my medications in stock, so I have to make sure that I order them with plenty of time to spare. Lately, the issue has been all of my medications being on back order. So even though I call them in a week or so before I actually need them, I still don't actually get them in time.

On another note, the wedding is in 12 days!!! So many exciting things going on the next couple of weeks. But here is a picture I haven't shared yet. This is what Eldon's groom cake will look like. You can tell that it's definitely his cake. :)

Sunday, May 15, 2011

Days 9, 10, and 11

Well... here is me playing catch up once again. My biggest milestone or challenge go with the same story. When my doctor told me I would need a lung transplant soon, I watched my future slip away from me. I know that if you get a lung transplant, you have a second chance at life, but it is risky and difficult to say the least. I have a lot of plans and goals for my life, and when I thought I was around the corner from being on my death bed, I did not see how I could ever make those things happen. I then decided to turn my life around and push back the need for a transplant. That was my biggest challenge that I am still facing today. Turning around from doing nothing and trying to do all of my treatments was/is really hard. My lung function ended up raising by 20%, and that is my greatest milestone so far! Hopefully, some of those goals I have set for myself will become even bigger and better milestones. We'll see!

I think the cons speak for themselves, but here are a few. Cystic Fibrosis shortens lives. It is shortening mine. CF makes it hard to breathe. I don't know what it is like to take a real breath of air. On hot, humid days like today, it is more difficult for me to go out and do things. The air feels thick in my lungs, and I get out of breath much easier. Because of this disease, I have a pretty terrifying future ahead of me.

Enough about the bad things though. There are so many good things that have come about because of my having CF. The picture says it so well. I really have met a lot of amazing people. I have joined a website filled with people dealing with CF, and I am constantly blown away by the stories of courage and strength. God gave me this challenge for a reason, and I believe that a big part of that is this blog. I have the ability to spread awareness of this disease that affects about 30,000 people in the US and 70,000  worldwide. I have gotten to see the generosity of people in my life. I probably would never notice that side of people without this disease.

I'll be honest about this one... I don't even know what some of those P words are or what they mean, but I can tell you about the ones I do have experience with. Pancreatic enzymes are a huge part of my life. Because of the effect that CF has on the pancreas, my pancreas is unable to release the digestive enzymes that allow your body to digest your food. I take pancreatic enzymes to do that job. I have to take 6 with every meal, and if I don't, let's just say, it's not pretty. It cause a lot of stomach issues for me the next day. Pulmozyme is one of my inhaled medicines. I do it once a day, and it takes about 10-15 minutes to complete. I have been on it since I got diagnosed. Pseudomonas is a bug that many people with Cystic Fibrosis have growing in their lungs. Fortunately, I do not have that right now.

I guess that's all for today. Maybe I'll stay on schedule for the rest of the month with the posts, but my guess is no. :) I hope everyone is having a fantastic day, and again if you have any questions at all for me, feel free to email me HERE.

Great Strides 2011

This is just a quick update about the walk. I will get back to the 31 days of May tomorrow. I want to thank everyone who donated this year! I will have more information about how much money was raised total for the walk, but I can tell you that we turned in $6040! That is awesome, and we were thrilled to have that much!!!! So thank you so much for everything that you all do! I feel so blessed to have such amazing people supporting me in this fight!!! If you didn't have a chance to donate, but you want to, it's not too late! :) Just click HERE.

Sunday, May 8, 2011

Mother's Day and Day 8

Happy Mother's Day! In honor of this special day, I thought I would say a little something about my amazing mom. My mom is one of the strongest people I know. She has taken everything that God has dealt her with an amazingly positive attitude. I was always sick as a child before I was diagnosed with CF, and my sister has a major heart condition that forced her to have open heart surgery when she was 3 years old. Given our health issues, Mom has always been there taking us to doctor's appointments and asking questions that no one else would think to ask! :) She is an amazing woman, and I couldn't have chosen a better mom! Love you, Mom!

Well, day 8 is all about non compliance, and as I have mentioned before, I have a lot of that in my past. I was great with doing treatments and taking my medicines until I reached college. During college, I found a new freedom that I hadn't had before. I wanted to do things like go out with my friends and stay up late. Treatments just got in the way, so I pretty much stopped doing them all together. As a result, my lung function took a pretty big hit. Then, in August, my doctor told me I was in need of a lung transplant. Needless to say, I started doing my treatments, and my lung function went back up. I still struggle with making myself do what I need to from time to time, but it is much easier to remind myself why I need to keep fighting. I speak from experience when I say that it is incredibly difficult for people with Cystic Fibrosis to stay compliant all the time with all of the treatments. The important thing is that if you do fall of the wagon, you have to find a way back on. Without the treatments, we cannot live a full life. I am compliant now because I know the risks, and I have so many people to stick around for.

On another note, the Great Strides Walk in Knoxville is this coming Saturday. My goal is $1000, and I only have $70 more to go. If you would like to make a contribution, just click on the picture above, and it will take you to my donation page! Every little bit helps! Thank you so much in advance!

Saturday, May 7, 2011

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!

Friday, May 6, 2011

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.

Tuesday, May 3, 2011

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.


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! :)

Monday, May 2, 2011

Cystic Fibrosis Awareness Month


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!