thursday aka my favorite day of the week!

ello lovelies! its thursday && that means aside from #throwbackthursday, you get to hear from me ;)

( waiting on the doctor )

well I had a dr's appt w my CF doctor today. it went well, nothing really about it caused concern. so thats good! && the only thing that changed was that I asked to be put back on advair && hts (hypertonic saline). coming from someone who refused to do hts at home, its shocking && I understand ;) but at least its only 3.5% for now. much tolerable than 7%. bleh.
my fev1 was 37% today && when I'm in the hospital, it goes up to 42%. however, 37 is an improvement for me. so I'm okay w it for the most part.

so ever since my ICU scare back in january, I've considered myself "scared straight" in a way. && no matter how much this disease actually scares me, I like the fact that I think about it differently now. of course its all for the better. I basically had my head in the sand whenever someone outside from my dr's office or myself wanted to talk to me about it. aka my family. I know that we as CF'rs all deny, to an extent, that we actually have this terrible disease. && its understandable, but also very naive. now it just breaks my heart when I hear from fellow CF'rs who dont exactly take care of themselves like they should. mild case or not.. because I was once there && now I see what my family must have felt. theres just so much you can do for someone. you cant physically make them do their meds/treatments, but I try to be there for others as much as I can. especially now that I'm open about it && love connecting w other CF'rs.

( right after I got the call )

yesterday I got my 2nd call from the pre lung transplant team at the University of Washington. they called to go over cost for each part of transplant. I didnt even come close to guessing! but these baby steps that are being made towards getting my double lung transplant are scary, yet exciting :) they'll call me back in a couple weeks to set up an actual appt in seattle. this is hugeee. this whole process is feeling so surreal now that its actually going. we havent even come close to doing anything big for it yet, but I'm really excited. to be honest, I never even thought about a transplant before I started connecting w other CF'rs.. from what I've learned about it so far from others, I love that I can have time to sort of mentally prepare. especially w my anxiety issues. I dont know all the details that include getting a lung transplant, but I do know that its not an instant "fix" && that it'll take time to readjust && hard work to keep it up. but after that ICU scare, I dont want to come anywhere close to that again....

( improvising at its finest )

my insurance is lame. they kick me out of the hospital after 9days now && I have to continue 5days w at-home IVs. I dont particularly like doing them at home because it adds to my anxiety, but so far we've done pretty good. I'm so glad I have someone like michael to help me w everything. he's truly an AMAZING❤ murse. && we've gotten the routine down pretty good && quick. this time, instead of just 2antibiotics, I had 3. one was brand new to me (forget the name). but we had 2pumps && 1push antibiotic. I prefer the port SO much to the PICC lines. && I am so glad that I got one! seriously. took awhile to get used to though. when I'm accessed, it kind of weighs down on my port && after 2weeks of antibiotics I am soo ready to be deaccessed. showering is definitely the best part about being deaccessed! oh && itching again ;)

back to the whole transplant idea, I would honestly be nowhere w out the support team I have. my family && boyfriend are my rockkk. I got so lucky w them being so supportive && just wanting the best for me, whether that means pushing me to do my treatments/meds or just being active. && I cant thank them enough for all that they do.

its april 25th soooooooooooooooooooooooo that means just 6more days til #CFawarenessmonth !! I've never "celebrated" may as our awareness month before, because I either missed it or just didnt know when it was. so I'm planning on posting a picture every day of the month to help raise awareness. you could say that I'm just a tad excited ;)

good thoughts. good vibes. good wishes. && so it is.
xx

( PS, shoutout to my sister +Nicole Dean, guess what I'm eating atm? nalley chili ! )

an ICU scare :(

hey!

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....

xx

be brave <3