I'm young. 18 years old to be exact, but my heart and mind say otherwise.
At a younger age I was never able to understand most things that were brought upon my life. I was constantly facing new struggles that kids I was surrounded by weren’t dealing with and may never have to. I grew up surrounded by medical terms, doctors, and hospitalizations. I became familiar with medication lists so long that they consumed 3 full pages.
My whole life I have been raised through challenges, broken dreams, and learning to adapt to new lifestyles time and time again. As I began to get older and wiser I learned to accept my fate in life, I learned to face difficulties with nothing but a positive outlook, and I learned that there is no way to change your past, but there are ways to make your present and future worthwhile.
There have been times where I was not able to keep my vigorous frame of mind. In these moments I would feel myself slowly drowning in sorrow, defeat, but most of all, guilt. I felt guilty because, even though I may not have been in the best situation, I was far better off than some people in this world. These are the moments that have helped define who I am. People will hear my infectious laugh during my most difficult intervals, I will have an everlasting smile on my face when all I want to do is break down, and no matter what is going on in my life, I am always putting forth the effort into making others happy.
For me to be able to say that I am satisfied with myself, life, and all of its entities is a wondrous feeling and gift. Every day I fight the odds and live with a mad, passionate determination, which no matter what, will never be destroyed.
I’m young. 18 years old to be exact, but my heart and mind say otherwise.

Thursday, December 20, 2012

De-accessing my port-a-cath

I am finished with my course of IV antibiotics!! YAYAYAYAY! 
Now I'm off to go take an amazing shower! Even simple things like that can easily be taken for granted. 

Wednesday, December 19, 2012

Update on my sinuses

And this is what happens when you leave a bag of Creon in your pocket and it goes through the washer and dryer..

Monday, December 17, 2012

Goodbye Bronson. You will be missed!

I was not able to get pictures with everyone that I would have liked too, but here's a select few of some of my favorites :) 
Oooh, and my hospital room!

Sunday, December 16, 2012

Lauren Czerwonka

This is a post written by the beautiful Lauren Czerwonka
This proves how much we mean to each other. 
We're not just cysters. We're sisters. 

 Alexandria is my best friend in the whole world! We both have CF and she has been my inspiration for 5 and a half years. We met on youtube and after a couple awkward video chats, we pretty much know each other's families and friends :) We have had a few sleepovers and we had our most recent one last night! We video chatted for almost 17 hours straight! That was our first video chat in 4 months! We haven't been keeping in touch very well for the past couple of months because of how busy we both are. It's my senior year of high school and she is a freshman in college, but she also is very busy with the hospital visits and keeping up with her treatments and healthcare. No one will ever know me the way she does, or will be able to make me as happy as she makes me. I owe a lot to her and I try to support her as much as I possibly can because that's what best friends do. I hope that one day we will be able to meet each other in real life once we are either cured or she gets her double lung transplant. She fights so incredibly hard to just take a breathe everyday and if I could, I would take her place in a heart beat. It has been extremely hard for me to watch her deteriorate over the past 5 years and I know what will inevitably happen sooner or later. I know that she is strong enough to hold on long enough until she is at the top of the transplant list. I only wish the best for her. I have to be positive because I know that God has her in his arms. He will do what he has to do and I trust his choice. Alex was placed on this Earth for a very important reason. That reason is to inspire everyone she meets or even sees on the street to be a better person and to be grateful for the life they live and especially the air they BREATHE.  Breathing is something that too many people take for granted in this world and it is her duty to spread awareness of Cystic Fibrosis. People are dying everyday from it, so they only thing we can do now is keep our heads up and wait until it is our turn to leave this Earth and go to God, or to hopefully beat this disease and live to inspire others to as well. Alexandria is my best friend in the whole world, and I will never let her go. I don't know what I would do without her. 

Alex, I am so proud of you for making it this far.
I love you.

You and me together,
Always and forever,
Nothing can tear us apart,
You'll always be in my heart.

This is an essay I wrote about her.

2, 296 miles is approximately 33 hours away from me, driving time at least. 33 hours? Ha, that won’t stop me. Bothell, Washington is where I plan to go and Lauren Czerwonka is the reason I plan to go there. What started off as a simple YouTube comment sprouted into much more than I imagined. Continuous messages were sent back and forth and a friendship that is unbreakable began to form. After several awkward video conversations we soon became comfortable around each other and became a support system for one another. We became best friends who not only shared the same disease, but also interests, outlooks, and everything down to our favorite food. 

I’m not interested in all of the “must-see” sights of the world such as, The Statue Of Liberty or the White House. Yes, that would be such an adventure as well, but I have more important things to check off of my bucket list. I can’t say that this trip will happen anytime soon, but I am planning on making it happen as soon as possible after I receive my double lung transplant. Cystic Fibrosis patients are not allowed to be in contact with each other due to the infections that harbor in our lungs, which can be transferred from one another through cross contamination. With my new, healthy, and infection free lungs, I will have nothing to pass over to Lauren. Luckily, she only cultures one infection. I also have the same one, but I have a few others that she doesn’t have. I imagine that this would take place over the summer since we will both be out of school for the time being. I would love it if I were able to stay at least a month. I know Lauren’s family would welcome me with open arms beings how we have talked with them about this happening someday, so finding a place to stay wouldn’t be any issue.  

Will I fly or will I drive? I’m not too positive on that either. Flying will probably be my choice even though I do love long road trips. An estimate of around $600 is how much it would cost, there and back. I currently have well over a couple thousand dollars in my savings account that continues to grow, so I know I will be okay in that department. When it comes to family and your best friends, money doesn’t really seem to be an issue though. I will use however much is needed and it will not be regretted. We are able to use Skype, texting, and picture messaging to communicate, but that just isn’t the same as being in someone’s actual presence. No, it’s not at all. 

Between the roughly 5 ½ years that I have known Lauren, I honestly couldn’t begin to tell you how many times she has helped me through my difficult moments. Unlike me, Lauren’s health is substantial. Her lung functions run around 115%, while mine are 40% on a good day. She is involved in sports all year round, while for me, just walking through the store can be difficult at times.  She has seen me at my absolute worst and has witnessed my not so good days. Most importantly, she has continued to stick around despite witnessing her best friend rapidly decline. Lauren has given me someone who I can talk to when I become scared and feel lost. Just recently we had a conversation that proves my point.
After contemplating for a while on asking Lauren I finally sent her a message saying, “Would you rather have me be completely honest with everything that’s going on or just go over the basics? 
“I’d rather know everything please. As hard as it may be (Czerwonka).”
“I figured. I was just worried because there have been people that decided to just not know anything and left suddenly because they said it was too hard.”
“I love you so much and want to go through this with you. I’ll always be by your side. Can you believe we’ve known each other for 5 years already? We’ve grown up so much and you’ve taught me so many things (Czerwonka).

This is the Lauren I have grown to love even though we may have never met in person. This is the Lauren that I will someday meet, face-to-face. We will be able to hug each other and laugh and cry and talk about everything and nothing. The day I meet Lauren in person will be a day never forgotten. I will cry an enormous amount of tears of joy while not having enough words to say. I will make this trip happen. Just like a saying we both came up with together, it will be, “Me and you together, always and forever. Nothing can tear us apart. You’ll always be in my heart.”

This was after one of our "sleepovers" where we stay on Skype and fall asleep and wake up together :)

First visit at University of Michigan

So, last Friday the 14th, I had my first visit at the CF clinic at University of Michigan.
It was actually really good. After the nurse put in all of my medication, which took about 30 minutes, I sat with Dr.Simon for about an hour and we went over basically everything. He changed some of my medications around and I stopped taking a few of them. I am only doing Pulmozyme once a day instead of twice and have stopped my high dose Ibuprofen. 
We talked about transplant and he said that normally they will start evaluation if your PFT's are running around 30% and you're using continuous oxygen. He also said that they can sometimes start evaluation sooner depending on your circumstances such as, how many times you're on IV's and how low your numbers drop when getting sick. When I get sick I am eligible for transplant so he said that we may start evaluation within the next six months, but it also depends on what the transplant doctor thinks (I've heard amazing things about her). If your numbers are higher when you're not sick, you can still be listed, but you will just be placed fairly low. 
I have a lot of confidence in him with just the short amount of time that we talked. I was a bit worried about feeling rushed since he is definitely a busy guy. You could tell that he took out the time to go over all of my charts and information, which was really reassuring. All of my questions were answered without me having to even ask them. He told me that he sees roughly 260 CF patients which is CRAZY! I also found out that if, and when, I go in the hospital, I will be going to the adult hospital and staying on ward 6C where they keep all of the pulmonary patients. All of the nurses are specially trained in dealing with pulmonary patients and a nurse doesn't ever have more than 2 patients with CF on the same day to help with cross contamination. 
So yeah, that's about the gist of it. I am currently doing home IV's and don't go back until January 11, if all goes well. He told me that for adults, they usually just have you call in and tell them if you want to stop IVs or continue another week, which is different than my clinic. Usually I would go every week while on IV's to be monitored, but he also said that if I feel more comfortable that way, then I can do that. Dr.Simon basically told me that I am in control of my health and what I feel needs to be done, can more than likely be done. I really appreciated that and I believe that this journey will be a big step into being more independent and officially becoming an adult.
It will definitely take me a while to get used to everything. I've been doing the same routine for 18 years. I'm the type of person who likes stability, which is bizarre beings how much there's ALWAYS something that happens in an instant. Maybe that's why I like stability...because I never have it. Anyway, I felt completely comfortable at my clinic and at Bronson because I knew how everything was ran. Everything down from the exact process on admission to how respiratory, nurses, and PCA's have their schedules ran. It's okay. I'll get used to everything eventually and I'll be able to call it my "second home" some day, as bittersweet as it is.
 I am going to have another sinus surgery and I'm calling tomorrow to get all of that scheduled and figured out. I'm not looking forward to that. I've been through quite a lot in my life....the sinus surgery was one of the worst things I've had to deal with. It was torture! They said that this one would probably be worse because I have to get my septum straightened and scar tissue needs to be removed from my first one. Siigghh. When it happens, I'll have to record a video when I wake up so you all can see how miserable I am and laugh at me! I had blood running out of my nose for 4 days straight...literally. I also was throwing up and coughing up blood from swallowing it, all I could smell for 3 weeks was blood, I got an infection and started having high fevers, my O2 was sitting around the 80's and I had to wear an oxygen mask for about 4 days. It was miserable, to say the least. Enough about that though!

This post is extremely long so I'm going to be done for now. I will be posting pictures that I took with some of the Bronson staff eventually. I have to take them off of my camera and put them on my computer. 
Okay, I'm done for real.
Thanks for lasting through the whole post, if you did :)

Tuesday, December 11, 2012

Nothing but good news!

Yes, yes, yes! I finally have some good news for once!! And not only that, but there's A LOT of good things to update on!!
For those of you that have watched my latest YouTube videos, you know that I am currently in the hospital.
I got admitted on December 3rd with 25% PFTs, weight was 103, O2 was 89/90, and I was running a slight fever.
It is now December 12 and my PFTs are 41%!!!!!!!!!!!!!!! YAYAYAYAYAYAY!!! Unbelievable! That is the highest that my numbers have been in montthhssss. I was so surprised. I am feeling SO much better than when I came in, obviously. My weight has gone up to 106. My O2 is about 96% on room air during the day. It still drops to the low 90's at night.
I got an ultrasound last week because it feels like I have kidney stones, and sure enough, there's some on each side. They're currently pretty small right now and aren't blocking anything, so that's good. I have to make an appointment with the urologist and see where we'll go from here.
My sugars were a bit off and there was a higher amount of protein in my urine so I had to do a glucose test and everything came back normal....more amazing news!! I would have been incredibly upset if I found out that I have CFRD (Cystic Fibrosis Related Diabetes). I would deal with it and do whatever is necessary, but don't I have enough going on already?
This will be my last stay at Bronson Methodist Hospital. I am being discharged on Thursday and will have my first appointment at University of Michigan on Friday. I am nervous, but I am also ready. I think it will be good for me to be at an adult clinic. It's going to be incredibly hard though. I've been coming here for 18 years. For the past 6 years I have spent countless days in the hospital. Over the past year I have been hospitalized 7 times which each stay being 10 days or more. After all of that, you tend to grow close to a lot of the people that work here. Nurses, respiratory therapists, child life specialists and even the transport and housekeeping people. Heck, I even know the food service just by their voice. I've already had to say bye to some of my favorites. I'm trying to get a collection of pictures of as much people as possible. BUT, this doesn't mean that I won't be coming in to say hi. There's no way that I couldn't. These people are my family. Speaking of pictures, I drew some artwork that will be displayed in the Bronson art gallery so there will always be a piece of me with you all!  Thank you all so so so much for everything you do. Everything from trusting me to take my medications on my own to bringing me candy from the nurses lounge. There's no way I could repay any of you. I will miss you all so much, but this will be a new chapter in my life that will hopefully be just as rewarding. 

Monday, December 10, 2012

We are the timekeepers

I know I had just posted something similar to this, but I came across it just now and I feel like it says a lot.

"Try to imagine a life without timekeeping.

You probably can't. You know the month, the year, the day of the week. There is a clock on your wall or the dashboard of your car. You have a schedule, a calendar, a time for dinner or a movie. A dog does not check its watch. Deer do not fret over passing birthdays.
Man alone measures time.
Man alone chimes the hour.
And, because of this, man alone suffers a paralyzing fear that no other creature endures.
A fear of time running out."

Wednesday, December 5, 2012

There's only today

"Maybe you can afford to wait. Maybe for you there's a tomorrow. Maybe for you there's one thousand tomorrows, or three thousand, or ten, so much time you can bathe in it, roll around in it, let it slide like coins through your fingers. 
So much time you can waste it.
But for some of us there's only today. And the truth is, you never really know."

Sunday, December 2, 2012


There stood a girl.

Her looks fall nothing short of perfection, as others have said. The long brown curly hair and high cheek bones that are fixed with a permanent rosy shade. The little mouth that is filled with loud gestures of that constant, addictive, and adorable laugh that make everything seem okay. Her eyes. Those sharp eyes that have witnessed more than beyond belief. Tears have fallen from them with laughter that would cause the stomach and jaw to ache. Tears have fallen from them with pain that was caused from the constant aches of this so-called body. The thick, dark, and incredibly long eyelashes have been concealed with mascara, but only to be ran down those rosy cheeks at the end of the day. She is not ashamed. She lets her tears fall when things get rough. 

There stood a girl.

She believes in everything. Happiness, hope, adversities, new beginnings, laughter is the best medicine, your family=your life. She believes that she can take on the world, and so she did. One day at a time. One breath at a time. One "breath" at a time. She believed in love. Ahhh yes, she believes in love. "The greatest thing you'll ever learn is just to love and be loved in return."
She believes in nothing. Dark succumbs, pain is second nature, there is no hope, oxygen and morphine is the best medicine. One day at a time. One breath at a time. One "breath" at a time. She believes in love. Ahhh yes, she believes in love. Always. 

There stood a girl.

The fight in her pale, yet strong body is indescribable. The fight is against her body. She is strong, but she is weak. The signs of wear and tear are not entirely visible. The signs of strength are definitely not clearly visible. Her lungs may be fragile, scarred, and torn down, but her heart still remains strong and always will. Scars on the outside are warrior markings against an ongoing war. Someday she will win.
No, she has already won.  

I am standing.

I am not ashamed. I let my tears fall when things get rough. I believe in love. Always. 
Someday I will win.
No, I have already won.