Thursday, April 25, 2013

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 AMAZINGmurse. && 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.

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


  1. Ok that's just harsh...eating my absolute favorite chili that I don't have access to. Sad thing is, you're the nice sister so what does that say???

    My uncle is currently down here in Phoenix. He just had a lung transplant a few weeks ago and is healing like a miracle. His story gives me complete faith that yours will be just as great! Too bad yours won't be done here as well so I could see you.

  2. haha, you love me doe ;) what did he have a lung transplant for?