3weeks behind!

alright hey all! so I know I am about 3weeks behind on blogging.. our wifi went down && I had no internet. buttt I just got admitted into the hospital (for an unexpected "tune-up") && have internet again, yayy! only thing I was looking forward to. that && feelings better, of course ;)

so the jist on the admission is that there has been a lot of smoke in the air lately, due to fires. && now the farmers in hayden are burning their fields. real cool. I honestly want to sue everytime it happens, because how can that be leagl w other people out there having lung conditions? I remember back in 2005, we got a settlement from doing such things, && it wasnt even worth it! it didnt change anything && the amount was bullshit.

speaking of the hospital.. I'm in this really weird room this time. its away from the front desk, which I like, but I guess the nurse said its a 'no pressure' room? so theres a window on the door, boo. && a weird thing in the window, blocking about 1/3 of it, for reasons that go w the 'no pressure' thangg. but  I mean, we all cant have everything perfect everytime right? then life would be a bore!

....

I just went down to get an xray done of my chest && now I'm just waiting on someone to come access my port. I wish I could've gotten a meal pass goin so I could have run down there real quick while I'm waiting. but I know that I basically have to order my first night in. I get so used to it up here sometimes, that I actually forget how hectic it can be out there for the nurses. I mean, my admit was just as much as a surprise to them as it was to me....


so since I havent been able to blog, I also havent been able to update y'all about my pre-testing for transplant listing! well I've hit a couple snags w it, what of course, && am actually just waiting for some dates to come&&go. I just recently found out that my insurance doesnt cover dental, something that I've never once had to deal w before, && so I have to find a low-priced dentist soon. I also needed to find a primary care dr because they have to send over the referrals for my echocardiogram && right-side of the heart pressure tests.. rather than my clinic doing so. so I found one, but my appt isnt until sept 26th! I also need to finish my pap-smear that I could only do half of, but I'm waiting on a couple of other things for that too.. && on top of all that! my car broke down about a week ago or so && even if I had appts coming up, would have to find rides for.
oh && I also sorta moved across town, soo thats been hectic as well. I now live in a household of 8 :)


also! I'm doing a #CFslideshowproject && would love for any cysters//fibros that I can get to join me! what it is, is its basically like any other CFslideshow you've seen.. but I want to make it more personal. I'm gathering info from those who I've actually talked to, been talking to, or those who want to talk more. so if any CF'rs wanna be apart of it or just know more, email me at: natalie.plhf@gmail.com 

 

( you want this life? then fight like hell for it! )

hospital // moods // appts.

ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!
I dont know why I forget so easily to blog! I knew I wasnt going to make the thursday deadline, so I was planning on doing it yesterday && wouldnt ya know it.. I forgot.. AGAIN.
ugh..


so the reason why I knew I wasnt going to make the thursday mark, was because I had planned&&worked all thursday on a video project for my YouTube channel. its one of those flashcard story vids telling my story w CF. its only a 6min video, but it took me all day w planning on what to say, how long to hold up each card, check to make sure the writing wouldnt turn out backwards (that took me way longer than necessary to find out..), choose the right themed music, etc. well I could tell you all about it, or I could just show you. so here it is!

~~~~

alright so I am currently in the hospital (boo) && my mood is turrrrrible! I am so irritable at EVERYTHING. I wish I could blame it on an IV med or a steroid, but its not. its just me && I hate it. maybe its just the nurses that are driving me nuts, but azsxdcfvghjbjklm....

but I do get out in 2days which is good! yet bad. I've only been in here 6days (on monday) out of 2weeks.. my insurance sucks. they kick me outta here when I'm "too healthy" to be in. its usually 9days of getting to be in here, but I came in just before my CF was getting bad. like I could feel it creepin in, so I didnt want to feel its full strength && thought I was doing something good by getting ahead of it this time.. I'll still continue the regimen at home, or Michael will actually, but still. I'd so rather just do it all here. less stress. less worry. less forgetfulness. I just dont understand how I'm "too healthy" when I'm trying to get a double lung transplant! so whats that supposed to even mean then?? me fev1 just before I got admitted was 32%, the lowest its ever been outside of the hospital. last time it was checked, it was 37%. doesnt sound like much of a difference (to a healthy person), but to me thats a lot! the highest I've ever seen for any of my pfts was 42%..

ugh && my hands are itching so bad right now that I want to rip my skin off!!!!

but enough w the negative, my sister&&niece stopped by lastnight to cheer me up since I've been irritable&&down lately. they brought me goodies n love. ♡
  

so a couple of days ago I got a call from the transplant coordinator, down in seattle, about my checklist for tests that I can do in my own town before I do the bigger ones back in seattle. I found out my bloodtype && was informed on a couple other tests that we hadnt gone over yet. but its okay, nothin major. there are about 9tests that I'll need to get gone here before returning to seattle. she told me the dentist appt would take the longest (mostly in wait time). I havent even been to the dentist in years so I'm reallyreallyreally not looking forward to it.... but I know its necessary && will be worth it in the long run. just gotta keep reminding myself of the end goal for all of these baby steps I'm taking.


NetFlix recommendations: 90210 && Bully.

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

Special Edition: Seattle Trip #1 - Part 2

today started off even earlier than yesterday.. 645am to be exact! I rolled over this morning to check the time && my alarm went off just as I picked it up. literally. our appt was @ 8 so I wanted to give us plenty of time even though we were just a couple of blocks away. well, we ended up being there 1min early. go figure. I'm never on time for appts.. but my brother came && stayed w us lastnight so that we all could go to the appt together && be a lot less scrambling around. so we were rushing to the appt && before long I got winded but kept going because this was the most important appt I've ever had (including when I was diagnosed), in my opinion.

when we were greeted by the first lady, I was pretty nervous. I just kept thinking of a recent blog post from a fellow cyster of mine && her experience w pre-lung transplant nurses/dr's scolding her. this lady was kind of rude in my opinion && yeah she probably had a reason to (I forgot to bring a med list w me), but I still was freaking out on the inside just waiting for it to happen. it never did, the rest of the team were really nice which really eased some of my nerves. some.

they did a little more initial testing than I was lead to believe, which was good. to me atleast. the testing consisted of a 6min walking test, urine, sputum, && blood work (w a lot of viles). they wanted to draw from my port first off but I asked to do it from my arm. thank goodness I changed my mind, much much easier from the port. of course they weighed me, listened to my heart/chest, took my blood pressure/temperature, && looked inside of my mouth&&nose. I talked to 2 transplant dr's && a transplant coordinator. the coordinator is going to give me a check-list of tests that can be done in my city at home. once those are all done, I'll have to come back down to seattle to finish the ones that can only be done here. they made it sound like there isnt any red flags for me, so far, to prevent me from getting listed && hopefully it stays that way because I could use a break!

at one point when I was talking to the 2nd transplant dr, he asked me what I wanted out of this transplant. I felt about 5different pairs of eyes on me && got so nervous&&overwhelmed that I got really hot, flustered, && almost cried. I just couldnt articulate myself. && I didnt want them thinking that I was taking any of this lightly or that I wouldnt appreciate what a gift these lungs would be. I think I got my point across okay in the end though, which is the most important.

( Mazie - I want to steal her! )

after the appt, we dropped my brother off at his car then me && my mom went to see my grandma in tacoma. it had been almost a year since I saw her last && about 4ish years since I'd been to her house. we got to see her newish pup, catch up, && fill her in on my appt. my brother came by later so we all could spend time together.




we're leaving first thing in the morning && as much as I love coming over to the seattle area, I am ready to be back home! I was nauseous all day && had a tad bit of home-sickness, even though I was w family. that usually doesnt happen. maybe I just need to cuddle my mama tonight :)

( 4 generations )

good thoughts. good wishes. good vibes.

xx