Thursday, January 31, 2013

finally out of the hospital !!

hey y'all!

( upper right side of my chest )
so for my 3rd installment of my blog, I'm gonna talk about getting out of the hospital :) I got out exactly 1week ago && was in for a total of 3weeks. my longest stay thus far. but just before I got out, I got an access port placed in my chest. a couple of days ago I was able to take off the bandage && this is what it looks like now....

its healing && I'm getting used to it slowly, but its quite a change for me.. I used to be against this sorta thing because I never wanted something just staying in me for long periods of time. but in the CF world, we literally will do anything to save our lives :)

so w this port, I have to go to this place to get it flushed once a month. to avoid clotting n such. each time before I go in, I have to put on some numbing cream directly onto the site. because to flush it, they have to stick a needle into my skin to the port to access it. they told me that over time I'll develop scar tissue && wont feel the needle eventually. to be honest, I'm worried about the first time they do this. not because of the pain, thats second nature to me by now. but because it hasnt even been accessed yet && I'm sure it'll work fine, but theres still that worry of it not working.

it doesnt necessarily hurt anymore, I feel it less && less each day, but when I take a deep breath in or cough I feel this little tug almost. its not a worrisome experience, just getting used to it. I'm always afraid that the littlest movement will cause it to come loose or make my heart flutter like they warned me about. last night I thought I had some food poisoning from taco bell && threw up just a little, from which I was terrified of. luckily nothing bad came from it && it turns out I didnt have food poisoning. just another "its all in my head" situations. I have those a lot....

soo the day I got home from the hospital, my boyfriend had an awesome surprise for me.. he knew I'd been wanting to learn guitar for awhile now so he got me one!!
I'm so excited to learn! we still have to get strings for it, but oh well. just having it makes me happy. when I was little it was my dream to become a singer. but you need talent for that ;) I've heard of CF'rs who sing, which is amazing to me. but just learning to play would be enough :) for those of you who havent heard of them yet, check out the Furches twins! they're a pair of twins w CF who sing! here are their links:,,,,

as I mentioned in my first post, I was diagnosed at 10yrs old. so for the past 10yrs pretty much, I'd been fairly closed off about talking about my CF. of course my family knew. && close friends. && if anyone asked about details, I would tell em. but no one knew the depth. but at the beginning of this month, idk what happened, but I decided to become more open about it. I started this blog, discovered a couple social networking sites ( && ), && in the past couple of days alone I've made 50+ friends w CF on facebook! talking/comparing w others w CF about CF has really helped && I know it'll help a lot in the long run. I even find myself excited for thursdays just so I can blog about my life! :)


" beauty is how you feel inside.
&& it reflects in your eyes.
it is not something physical "

Wednesday, January 23, 2013

1day early!

Alright, I'm posting this a day early because tomorrow.... I get my very first port!! :)
As you can see, I'm excited. But also.. very nervous - on account of the overdosing of narcotics I explained in my previous  post. But my doctor, nurses, boyfriend, && family have all been trying to reassure me about it that I'm actually getting excited now.

Some of you may already know what that means. But a port is a small implanted tube that goes to my heart, like the PICC does. But it'll be in me all the time. You will be able to see it on the outside of my chest, but hardly. This way whenever I come into the hospital, I wont have to have any IV's or PICC's anymore. For which, I am excited about! Cuz to me, the IV's are the WORST part.

So back to the reason of me posting a day early.. when I get these kind of procedures, they put me on adivan. && it makes me very groggy&&loopy. At this time, my phone&&computer is not the best idea, lol.

Its wednesday now && my estimated release date is FRIDAY!!!! I'm getting stir crazy in here! I feel like I've watched everythangg on NetFlix alreadyyy.

As far as getting healthier when I get out, I have a treadmill lined up. My sister's dad is lending me one until I dont need it anymore. I never thought the day would come where I got excited about working out.. hahaha ;) I've also gotten lots of tips on some healthier options of foods. Definitely ready to start putting my words into actions!


Thursday, January 17, 2013

an ICU scare :(


I just want to start off w the basics.... the names Natalie && I'm 20yrs young. I was born w a lung disease called Cystic Fibrosis. In basicBASIC terms, its just a wholeee bunch of mucus built up in my lungs. However, a much better definition would be:

" Cystic fibrosis (CF) is caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food.
This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. The disease may also affect the sweat glands and a man's reproductive system. "

I was diagnosed when I was 10yrs old. && although it was a big change for me, I didnt notice it all that much. I mean yeah, I coughed all the time. But nothing like it is now.. 

I'm in the hospital right now because of it. I come in about every 3months now for a "tune-up" of IV antibiotics for 2weeks at a time. Not fun, but worth it ;)

This time however didnt quite go as planned.. so my "goal" used to be to come in about every 6months, tried shooting for that anyways. But I hadnt made it that long in a looong time so time kept getting closer && closer in between visits. Like I said, its cut down to 3months now. Well at home I ran out of a very important CF medication used for one of my many breathing treatments. I know its careless, but it happens. So while I was waiting for that to come in, I tried toughening it out so I wouldnt have to go into the hospital. Well at this time I was already too bad off because I couldnt really make it up stairs. My boyfriend had to carry me. My co2 levels got super high; we think they were already too high when I came into the hospital. But once I come in here, I get whats called a PICC line placed in my arm for the tune-up. Its like an advanced IV that goes straight to my heart. Well when I get this PICC line placed, they put me on adivan && conscious sedation. Well because my co2 levels were super high, that meant my body could breathe in just fine but it wouldnt expel the co2. So my body was trapping it && my breathing kept getting shallower && shallower. This caused crazy headaches && so they were giving me vicodin && oxys for it. I have no recollection of this, I was just told that. The first few days are blacked out for me because of all of these narcotics. Well since I had all of these in my system (mind you, I'm 105lbs), it was just making the co2 levels worse && my body basically just wanted to sleep && sleep until I wasnt breathing anymore. I guess when I was found, I was laying in my own puke&&pee. I only remember glimpses of the event. Its weird trying to look back && pinpoint my very last memory of it all. So anyways, they put this BiPAP on me to force air into my lungs. && I guess it was making the co2 levels go even higher so they took me down to the ICU to get this huge blue nose cannula that also forced air into me. It was so much pressure that I was just breathing out of my mouth for a few days. Quite uncomfortable. Lets just say I was pretty happy to get switched to a reg oxygen cannula afterwards! So I was in the ICU for a few days && my blood gas levels && everything started getting better. When I finally started coming to in the ICU I felt almost mentally handicapped. I knew the words I wanted to say, but it was like my motor skills just didnt work right. I was confused easily but powered thru it. I didnt eat for a good 2days I believe - it was the last thing on my mind. I wasnt even hungry. Now I'm also CFRD (Cystic Fibrosis Related Diabetes), so they had to have me on an insulin drip during all of this. I'd never been on steroids before && they started those as well in the ICU. So after a few days of this, everything was starting to improve && I was put on a normal floor && onto a reg nose cannula.
I'm currently only on 2liters of oxygen, walking around on my own again, gaining weight again, eating again, doing everything I'm supposed to, meds are all working on me as they're supposed to && everythings looking up!
I'm a couple of weeks down && I've got 1more week in here to go!

When I get outta here I have to change things though.. I'm not the most healthy person (obvi), but I have to look out for my diabetes as well as my CF. I'm looking into getting a treadmill && start by walking w that at home :) Healthy eating will be the real challenge....


be brave <3