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

Special Edition: Seattle Trip #1 - Part 1

oh my goodness.... well our day started off around 730am && is just now winding down at 830pm. its been a long 13hrs..

so I packed up yesterday to stay the night at my moms lastnight && once I had everything in the car && dropped off Michael at his friends, when I was driving off I remembered that I hadnt packed my pulmozyme so I had to go back to him, get the key, drive back home, then head over to my moms. the night from there was calm but I didnt personally get to bed til about 2 && mom was up til 4. so I woke up at 730 && she was already ready && I just gathered what I needed && we waited for our ride to the airport to get the rental car. BUT we had to pick up my brother on the way so that he could get his car from downtown. me + my mom were in one car && my brother + his gf + my nephew were in another (this concluded the group going to seattle). so we get our car (black ford, fusion) && went to the nearest gas station. our first chore was to fill up (as the lady instructed). so we had a few hiccups w trying to find things on the car, like: the gas tank button, the fuel gauge, && the cruise control. once my mom started the pump, the nozzle kept shutting off almost instantly. && kept at it too. she just kept repeating "is it me? is it too sensitive?" && I'm sure some reading this are already thinking of the reason.. well we're women.. && blonde ;) soo anyways! we thought maybe it was just the pump that was sensitive, so we switched. turns out, the next pump did just the same && the next thing we know, the gas was spewing out of the tank onto the concrete.. so mom went inside the gas station to ask maybe if he knew anything about cap-less gas tanks, because we thought that was our problem. that we were just out of the loop from owners of cap-less gas tank cars. so I tried on my own && the same thing happened. mom comes back && remembers that regular gas tanks do that when they're full.... LADIES&&GENTS THE TANK WAS FULL! we hadnt found the fuel gauge at this time, so we were going off of this weird number on the screen behind the steering wheel. so we got some snacks && coffee at the gas station && we were seattle bound!

( found this lil gem written on a bathroom stall door @ dennys )

we stopped to eat at dennys around 2. next road-block, was some actual road-block - an hr's wait worth. on the pass over to seattle, there was some rock blowing-up going on && we think they're trying to widen the roads. which I found funny&&ironic. I (&& everyone else waiting) had to pee so bad that when we finally were able to get off of an exit w a gas station, there was a big line. didnt last too terribly long but still. another wait. I honestly debated just peeing in a cup in the car.. or in the bushes like this elderly lady did.. 
every road trip has some music right? we usually burn cd's for planned trips such as these, but I really didnt think about it. the stations of course went in&&out, but our favorite song of all time "Here I Go Again" by Whitesnake came on at one point && it was video-worthy.. lets just say that :)

( tomorrow I will be here )

once we actually got into seattle, I made use of my 'Maps' icon/app on my phone && found our way to UWMC (University of  Washington Medical Center). there are so many highways there that its really easy to get lost without technology! so thank gawd! we drove all the way up there so that we would know where to go tomorrow morning for the appt. turns (once we found the right parking garage.. underground) that its pretty easy to find. so we went inside && even went to the transplant office. it was closed of course, being a sunday, && we just wanted to gather our bearings && get a tad bit familiar w its location. that place is SO nice that its gonna suck going back to my own hospital.... but for serious. && just getting to the cafeteria is like a labyrinth! weird I know, you'd think I'd like it ;)


after we got done looking around, we went past the medical center to the other side of seattle to look for lodging. we had an appt at the calegiana center, but only for tomorrow night. we ended up finding this cute lil town-like center of nothing but restaurants && clothing/home-furnishing stores. it was surprisingly nice for how I imagined the neighborhood to be like.. serves me right for judging huh? we ended up staying at a travelodge && getting dinner from a QFC, which I'd never been to before. its really big&&crazy.. but nice. so I think I'm gonna dry my hair from my shower, do my treatment, settle down, && try to get to bed earlier than last. night night!



good thoughts. good wishes. good vibes.
xx