today I am 24

Today I turned 24. For a girl who didn't know whether she would see her 23rd birthday with her old lungs, 24 feels pretty awesome with new lungs. Pretty freakin' awesome.

me in a room filled with balloons...I am 24 years old.  

me and Tristan

so happy

all my balloons he blew up to give me a room full of balloons on my birthday...plus 250 more

this guy

out for dinner

christmas time themed birthday photos 

Thank you donor and to your generous family. I owe you my world, my life, my everything, my breathing, my birthday wishes.

be careful what you wish for....

Sometimes this is how I feel...why me?.... Really? ...Didn't I already go through a tragedy? (maybe getting a double lung transplant does not count?) And it's not like I even got to enjoy the whole year of this new life...it took me 6 months to truly begin to live. 6 months after transplant I was still workin' my butt off in rehab, etc.

Did I do something that horrible in my last life? Or am I being punished for that time when I was 12 years old and told a boy who walked into the girls washroom "oh this is the girls washroom" not realizing, he was actually a she (yes I still feel bad about that) sigh....

Someone told me "you know what Hattie, if it wasn't PTLD...it woulda been something else...SO here's hoping the tumour shrinks with just the steroids" ....true that, KA. (it's good thing your best friends have your back and can see the reason through the horror)

I know I have to stay positive and not think so blah....but hey I just got the blow on Thursday, so give me a little while to digest, no? Especially since they faked me out with the "untrue" biopsy results and I thought I was home free.

The key here is to distract the bananas out of myself. 

Because sometimes I just randomly cry. It just starts slipping down my face, in the most random of places and it's embarrassing and sometimes it just has to overflow from my eyes and leak, If I get too overwhelmed and start thinking to far beyond tomorrow. So it will be my one and only post (I hope) of glumness. Have to stay positive. It's one of the only things I can do.

We were talking about living back in the city tonight (we gave up the condo June 30th, I know right, what bollocks luck!)...did I wish to hard? to be in the city for the summer? Ha now we have to find a new place, because I'm "sick" again in the hospital...Lesson heard, and learned...Be careful what you wish for? 


At least this year, I walk and walk and walk, and breathe and breathe and breathe. J, told me "you know what...no matter what they throw at us...at least we are breathing." Boy... what a high price we pay for breath eh? Every single person is so gosh darn lucky to be breathing, to be getting older. To be living. We are fighting glitches every day. It was okay when it was just tiny little bumps in the road...but this seems like a mother effin', HUGE, almost at sometimes too hard to imagine, road block, kind of need super powers to fly over it! (Don't worry I have always wanted to learn to fly, So i'm sure I'll get my wings somewhere and make it over this road block, see positive thoughts, positive thoughts)


The doctors sure did a GREAT job on keeping my lungs good though (maybe a little too good since PTLD is caused by an over suppressed immune system, I've always been really sensitive to drugs, maybe that will prove to be a good thing for the drugs to get rid of PTLD)...It's just such a shame I was EBV negative and CMV negative, yet my donor was EBV and CMV positive (meaning when he <I still think it was a male donor> came in my body he gave me both viruses, and they started wreaking havoc on me)...If I had of known all these bad things would have happened to me, I might have held off for a more perfect match of lungs...but thinking back I guess I did not have more time to hold on to.

SO c'est la vie. The price I paid for breathing and living. Worth it? I know you might think I'm crazy...but yeah...It was worth it...and still is.

Selfish that I love living too much? That I put my family and friends through so much! hell I'm not even one year out (that's on Tuesday July 5th, one year lungiversary) I dunno I guess I just like living, talking, laughing, breathing and dancing too much?
Sorry folks, but you'll just have to put up with me a little bit longer...I'm not ready to go yet.

And mama d-stan...Ah mama d-stan, the "pillar for our family". A stranger told us the day I got hosptailized and it was her birthday, without even knowing who she was, he found out it was her birthday and said, "you go out for dinner, you deserve it, you work hard all year, your the pillar and rock for your family" understatment of the year...why was this strange man saying this to my mom? That's not something a stranger in the elevator who over hears a birthday conversation says to someone! He even looked like a guardian angel. So here's hoping that was a good omen. Mama D-stan Sorry for being who I chose to be my stress ball this week. I've never been too good with saying words out loud (even though I was in the drama progam at mayfield, I never tried out or wanted to be in a single play, and do not like giving speeches, etc. I think I sound weird or something, but I like to write) so here is my apology to my mom, for having to be my stress ball this week, and feel the wrath of HIGH,INSANE doses of prednisone steroid. (sorry friend Ian for getting it tomorrow ha, kidding i'll take it easy on you) mama I love ya. And I'm sorry I'm sick again. I promise next year I won't get hospitalized on your birthday! (every year, every gosh darn year. aye yai yai!)

favourite thing

yesterday was my dad's birthday.

my new favourite thing to do is blow up balloons. These lungs LOVE to blow up birthday balloons for a celebration.

I was just  going to blow up three...but then I just went to town and blew up 12 or so....without even missing a beat of breath.
Pre-Transplant...forget about it. I could not even blow one up.

Thumbs up for birthdays, balloons, and getting older, because it means you made it!

oh also if you want to check out some of my photos from washington. You can check out my Artistic Style Blog, which I update WAY more then the CF one (which is a GOOD thing since it means nothing new and exciting has happened in the health front)

Click here to view some washington DC photos
or
Click here

best birthday ever

helloooo,
so monday clinic went really good.
they said my xray was even better then when I left hospital. My bronch came back growing nothing...thats right, i am growing NOTHING in my lungs...for right now, nata thing. Its been 22 years not growing bacteria. hello world, its nice to not be growing anything. the only thing was my kidneys are not functioning correctly so on this monday we will see if those levels have come back down...they think its from the tac levels, an anti rejection drug.

I started exercise this week. it is sooo hard with my weak thigh muscles, I already fell in the room once this week, and my cousin had to lift me off the floor haha....hoy boy.
but ive had some real good mile stones this week....i showered, went on my side,(so far ive only been able to lay on my back, i still lay on my side, saying ouch ouch ouch ouch the whole time, but i bet its good to practise...) and went on the treadmill....AND got up from the edge of the couch without the assistance of my arms. I also went down to the courtyard. Makin improvements....just have to keep pushing, mind over matter. walk walk walk walk all the time so I can start walking normally...haha

I think my brain is starting to feel less alien too (although it is still soo weird feeling) ...since i even thought about going back home home home this weekend. i saw a photo of my cat and got incredibly homesick.

the fashion show is less then two weeks away! i cant wait to see it all go down. (theyre doing a live feed, so if you cant make the actual event, you can see it online!) you girls are doing an awesome job! wish i could be there live...but 300 people...im not suppose to be out in public places where i dont know the cold or germ situation....next year next year

its funny i started a journal each day so i could write down exactly what i did, to know the improvements snice its so hard for me to tell, and write down my moods, and yesterday was such a bad day...today is way different. ups and downs. i hope soon i willl start reading books again. i think i will, cause ive been thinking about it a lot...i have found that when i start thinking about things a week or two later i start to do them....if that makes sense...like i remember in the ICU i did not want my blackberry very often...the drugs messed me up and i just had no desire, but know it goes with me everywhere, and is back to normal, i also used to not want to talk on the phone, and now i am slowly anwsering and talking more on my phone....sooo everything will come in time...6 weeks on monday. Just have to pass the time for the next little while. but i think taking it one day at a time filled with visitors, so i dont get bored or depressed is key...followed by forcing myself to do all the hard stuff, like no matter how much i dont want to go for that walk...get up get up and just do it............
wow biggest rant ever ahahah...sooon ill be me again, i just have to patient.
ps did i mention i am going to have THE best 23rd birthday EVER....its in december....AND ill have new lungs (and hopefully no more alien feeling and able to walk normally? hah) and be all fixed up by then....chya...cant wait!

The Secret World of Status 3

Hey everyone, this is Hattie's "cystic cyster" L.

No, Hattie has not got the call yet--we are still anxiously waiting on that--but our girl was simply too emotionally and physically drained today to update the blog herself, so I will be her hands and relay the messages she text me this afternoon.

Yesterday was very hard for Hattie and it wasn't any easier today. Clinic was surprisingly not busy and she was pleased to see the head honcho, Dr. T. And there it was confirmed: the new med combo is not working. Her pfts have continued to decrease and are now sitting at 15% and her WBC has risen to 20, from 17 last week. The doctors decided (and Hattie even messaged me this in anticipation of it happening) that she is 'rapidly deteriorating' and will be moved up to the 'secret' third status list.

Unfortunately, for now she must also stay in the hospital again, at least until they try a new drug combo and confirm it is working (they are trying piptazo and colistin). Following her last, er, memorable hospital stay, she was not too enthused but she also accepted that--realistically--it's not wise for her to go home at this point in time. On the upside, she is staying in my old room with the giant fridge and freakishly huge washroom and her Mom will be staying with her tonight. The entire fam jam will also be coming down for her Mom's birthday tonight too.

It's all very scary for Hattie and her family now, so they are asking for all your super-charged-positive-vibes! Let's start visualizing those new lungs!

- Lindsay

Birthday

Tomorrow is my birthday. 22 years old.
I decorated my apartment with all my grandmothers old Christmas decorations. I cut down a little charlie brown type tree at my uncles farm for my apartment. My apartment looks so cute. I'm really pleased.

Christmas is so soon. It's funny how someone so important and such a huge part of me for the last five years is no longer part of my life...and how other people have just stepped in to fill the hole he left behind. Life goes on. I could not even stop it. New things have started happening to me. Life just continues on, it's truly amazing. I am blessed with so many great people in my life and all the new ones that I keep meeting and creating new friendships with. It's weird to think of what my life was like five weeks ago to what it's like now.

I recieved my first birthday present, and it sat under my christmas tree for a few days, but finally I opened it yesterday. It was the best present ever from my Cystic systa. Two margarita hand painted glasses, with recipes on the bottom of them, one is called Cadillac, with pretty pink cars all over it, and the other is called princess with beautiful princess theme all over it. They are actual margarita glasses, I am tickled pink, and cannot wait to have a margarita in them! Thanks soo much girl!

I worked out today, and my oxygen was great. It was fairly easy to work out today too. Last week I worked out four times...I know I didn't get my fifth work out in...buh. It seems the weekend I never am able to get the work out in. I really have to try to change that.
45 more minutes and I'll be 22...that seems so young, yet old.

I am excited to see this year be over. 2010, brings new and exciting things, I feel it.
Happy birthday to my older brother as well, he turns 24 tomorrow. My parents were blessed with two Christmas babies, two years apart. My older brother was not impressed the year I was born and mom was in the hospital for his b-day.
I'm off to bed, up early, as customers are still coming over to purchase jewellery, last minute shoppers! I also have tons of food to prepare for my birthday party tomorrow. 15 girls? chaos. muchos fun. Merry Christmas everyone! 36 more days till barbados!