The journey of two CFers

About Me

Hey everyone! Lauren and Alexandria are starting a CF blog about our lives with Cystic Fibrosis and how we became very close friends! :) We will be posting new posts every chance we get so keep checking in! Lauren writes in yellow and Alexandria writes in green/blue. Thank you! <3
Turn volume up at 0:38.

Thursday, October 15, 2009

Ever wondered?

So I'm pretty sure that everyone has at least thought about this once, well everyone with CF or any other type of illness.
Have you ever thought about what it would be like if we were born "normal?"
There's so many things that would be different in my life if I never had Cystic Fibrosis.
Here's some examples...
1.) I could be deathly afraid of needles.
2.) I would probably care more about myself than others.
3.) I would complain about having a cold.
4.) I wouldn't have to get up at 4:30 am on school days.
5.) I would think Pseudomonas, Xopenex, Pulmozyme(ect.) were all foreign words. :)
6.) I wouldn't make people wince daily when I cough.
7.) I wouldn't have to miss more than 60 days of school each year.

And the list could go on and on!!
If you really think about it, you could be thinking all day.
It's really amazing how different we are from people, but even if I am different, I would never give up the life I have.

That is unless a cure ever comes out.
Until then, I'm going to live my life the way I'm supposed to.
I'm going to live my life as a strong CFer!

Little facebook App.

People with blue eyes last the longest in relationships. They are kind, pretty or handsome, very good kissers and are really hot. They are very funny, outgoing and don't care what people think or say. They love to party.They are very satisfying and love to please. Are straight up WARRIORS((aka wolves)) when they need to be.They are bad to the bone. Peaceful with low phisical endurance. Spirtual intense computer lover.

I have blue eyes and that's what the app. said. It's actulley 100% true.
But one thing I love about it is the "straight up WARRIORS" part. It seems like everything I do relates back to CF. It doesn't matter what it is, but I always find myself thinking about it.

So that's all I have to say for now :)
Just thought I'd share.

Wednesday, September 2, 2009

Living with Cystic Fibrosis

Living with Cystic Fibrosis is..
But most of all, it's an adventure.
.When I think about everything that I've gone through in my life..It doesn't seem like I have actulley been through all of that stuff..
The hospitalizations,the numerous times I've been in pain,being sick,seeing my friends and family cry.
It's all so much, but all of this stuff is so easy to me, just because of that one gene that got mixed up.
The CF gene :)
Every single CFer out there has their own personality and lifestyle, but we're all the same because of so many reasons.
~We all have great personalities and attitudes.
~We all have inspired at least ONE person in our lifetime.
~We all fight everyday of our lives.
~And we're strong.
We're strong..
I mean, we are the doctors,getting poked with needles,coughing our lungs out,and taking every breath we have for granted.
I think..noo..I know that living with Cystic Fibrosis is a miracle.
Even if there are days when I want to kick CF in the head.
Soo yeahh..
I'm going to get sick
I'm going to be tired
doing my treatments take out almost 4 hours of my day
But most importantly..I can't change that.
So that's why I keep fighing..that's why we all do.
We know we can't take CF away so we just keep doing everything we can to put CF on hold..for as long as possible.

Monday, August 24, 2009

Knowing other CFers

I think knowing other CFers is like a rescue to us. For many reasons. By knowing other CFers we get the chance to talk to someone who actulley knows what we're going through everyday of our lives. They actulley understand. Also when we're talking about stuff like PFT's and all that, they know what it means. We don't have to go off explaining what PFT's mean, why we do them, or what the numbers mean. Like we would with alot of non CFers. It's almost like a council to us. When I talk to other people with CF, like Lauren, I feel alot better about myself. I don't really know why, but I honestly do. It helps me realize that there's other people out there like me who do this stuff everyday just to stay healthy. Also, talking to older CF patients has a way of helping me. It helps me because I know that someday I can grow up to be that old.

I look up to alot of CF patients. I have a very close friend who has CF, he was on the transplant list for about 5 1/2 years. Throughtout those 5 1/2 years he was getting sicker, but even though he was getting sicker he still kept going. He left his house almost everyday, (actulley I would of been surprised if he ever stayed home) and he still had a positive attitude about EVERYTHING. He never gave up, even on his toughest days. He kept doing all his treatments, and taking all of his pills. Everytime I talk to him I feel like a more postive person. He has showed me to never give up, and keep going no matter how hard you want to stop.

So for all of you CFers out there...
keep a positive attitude, talk to other CF patients, and never give up!

Sunday, August 23, 2009

Alexandria's Medications.

List of current medications
•Albuterol-3x a day
•Hypertonic Saline;7%-2x a day
•Pulmozyme-2x a day
•Tobi (not pictured)-Currently on
•Vest (not pictured)-3x a day, 20 minutes each
•Creon 20- 5 with meals/4 with snacks
•ADEK-every other day
•High dose ibruprofen-3200 mg a day
•Prevacid-30 minutes before dinner
•Nexium-30 minutes before lunch
•Flutter-while at my friends, or when vest isn't available
•Nasonex-when needed

Your Average Trip to the Hospital

Okay everyone. For those of you who do not know what its like to be in the hospital for two weeks at a time with a PICC line, I will give you a summary of what it is like.

So the day you get admitted is the day they do your procedure. It is nerve racking since they pierce a whole into your arm where your main vein is and shove a tube down your bloodstream until it reaches the point at which it will sit above your heart. It is somewhat painful especially when your vein spasms and contracts making it harder for it to move. This causes the doctors to push harder and that does not have the best feeling in the world. They give relaxation medicine and numbing medicine, but you can still feel feel it just oh so very slightly.

That is probably the toughest part of your journey to the hospital. Then when you are in your bed (luckily you don't have to share with anyone because you are a CFer) and once the medication wears off they plug you in to your IV pole and start feeding you fluids to help clean out your system. Then from there on you just get let off once and a while to walk the halls with your fancy hospital mask. Sometimes you can when you are connected you get to drag your IV pole with you every where you go. You get to pick your hospital meals for the next day and they are delivered to you regularly.

You also have aerosole treatments and vest treatments and medicine you take throughout the day. Every now and then you get to visit your "teen lounge" if your hospital has one. They are filled with games and activities you get to enjoy with other sick kids. But as soon as another CFer wants to come in, you are kicked out of there because no CFer is allowed to interact with one another so they don't spread germs and bacteria.

Showering is the hard part. You have to cut the bottom of a bag out and slip it on like a sleeve where your PICC is and wrap tape around it to aviod getting wet. You also might not wash that part of your arm for two weeks but I usually wash it in the sink avoiding my PICC line with success.

Mostly the rest of the time you are either bored out of your mind, doing independent study work, playing bingo from your most comfortable hospital bed, being on the computer, or having family and friends and all of the vistors in the world come and bring you presents and tell you how bad they feel for you.

My dad and I like to spend our time trying to get the bubbles out of my IV tube while it is beeping like crazy, and trying to avoid having to call my nurse every five seconds it fills with air.

Thank you for taking the time to read my story on Your Average Trip to the Hospital. I would love it if you left comments about your hospital stays and the fantastic adventures they may hold!!



Saturday, August 22, 2009

Introductions #2

Hey. My name is Lauren and I was diagnosed with CF when I was 8 months old. I am 13 right now going on 14. I will be 14 on August 27th! When I met Alexandria I was so excited and really happy. She is my first friend with CF. It's a really great feeling to know that you aren't alone. No one else knows what I'm going through but her. (well out of all of the people i know) No one else understands what I am going through out of every one that I know! She is a great support and I am really happy that she is appart of my life! :)

You make it all better when days are down!!

Thank you everyone!

Lauren <3 We could both use all of the support we can get =]


My name is Alexandria, I'm 15, and I was diagnosed with Cystic Fibrosis when I was three months old. CF has shaped me into who I am today, and without I wouldn't be the person I am. I love every second of my life, even if there are times when I'm coughing my brains out or I'm so out of breath I can't even talk. My friends and family are a HUGE part of my life as well.

I met Lauren through youtube. I made a video that she watched and commented on. After that we started talking through youtube, sending eachother videos, and talking on facebook. We have only known eachother for a couple weeks so far, but I feel like I've known her for longer than that. It's great to talk to somehow who knows what you go through everyday of your life. Lauren is an amazing friend who has a great personality, and someday, when we're cured we are going to meet eachother. Face to face :)

It was her idea to make this blog, for the both of us to use. And I think it was a great idea, and hopefully we'll get alot of recognition through this blog. Me and Lauren are going to be making our own post's and we each have our own different font so you can tell whos is whos. This will be my font for my posts. So this will be it for my first one.

Take care everyone,

Beginning of Something Wonderful!

I'm very excited to announce that Lauren and Alexandria with be starting a blog about CF and about us!! We hope you enjoy it! PEACE! <3

~Lauren and Alex<3