sometimes it's just the universe's way of reminding you...

Last week was my 18 month assessment. I have been living and breathing and fighting with these new pink, disease free, lungs for a year and a half now.
The week started off well.
My pft's were stable at 62%.
My six minute walk was stable at 615 meters.
My CT scan showed no changes.
My blood work came back very good.
My kidneys are working well.
Liver is in check.
My tac level (my anti rejection drugs) was a little low. It has been in the past. It sometimes bounces around the place the level. All in all everything checked out. I had even gained a little weight (love weight, or winter weight? Still debating...jury's out on that one)

I did my bronchoscopy Tuesday morning at 8am.

Thursday evening I had a jewellery show.

Thursday night, I got a phone call from my coordinator. My bronchoscopy results were in. I have acute rejection. (enter scary duh duh duh music...at least that's what happened in my head when I heard those words)

My new pretty little lungs were not happy with something I was doing...so they decided to start to reject a little. Just when I thought we were getting along so well.

It was not the nicest news to receive, the night of a jewellery show, 5 days before I leave for Vancouver for 4 months, and on a rainy awful night, when I stepped outside, missed the step, and went down in to the gravel in the mud, rain and cold...mustard sweatre and grey dress pants a mess: check.
Picture a very distraught girl.


What does this all mean? 
Well I guess they do not treat grade 1 rejection. There are four levels. I have level one.
They upped my tac mg (anti rejection drug) so that the blood work will become in the normal level.
They are thinking and hoping this will eradicate the rejection. Please pray and hope that it does.
It is probably one of the scariest things in the world to hear your lungs are rejecting...no matter what level it is. 
These awesome new little lungs that I worked SO hard to get, and SO hard to be where I am now are rejecting... sigh...a little discouraging. New Lungs don't you know, you and me are in this for life? You are suppose to cooperate from here on out! Please and thank you.

The good news is, I do not have a fever, my home spirometer has not changed, and my exercise tolerance is still a ++.

I have developed a tightness in my chest and a heavyness, almost like inflammation...maybe it's all in my head though? I can't decide, since on friday I received another voice mail, announcing that I had pseudomonas in my lungs (an icky bacteria...nobody really wants lurking around), another bronchoscopy result was in. Oh lovely, cause that's EXACTLY what I wanted to hear. 


Perhaps my little mind is working over time, thinking how the heck am I still going to get to Vancouver, live a 'normal life' and deal with these two things thrown at me?
The brain is a POWERFUL tool. I think it's tricking me in to thinking something is wrong with my chest, because EVERYTHING ELSE is absolutely normal. Worry wart over here.

Tomorrow I go in for blood, and to see the doctor.

I am planning on keeping an eye on everything when I am in Vancouver with the lung team out there in Van city, since with grade 1 it seems you don't really do anything, just monitor. I will get another bronchoscopy done in May when I am home.

As my friend Lindsay said when I exclaimed "but is this normal to get rejection this far out!!! (panic filled voice)"
"Yes hattie, that's why they do bronchoscopes for the first two years, because rejection is common in the first couple years, hence why they keep up with the bronchs"
Thanks Lindsay for being the calming soothing voice of wisdom.
OF course I txted all my other TX post and pre friends to make sure I was going to be okay. You know who you are. Thanks for listening patiently and guiding me with encouraging words. Sometimes a cystic has to freak out every once in awhile.
Anyways I'll let you know how tomorrow goes...If all goes well. I'll be writing to you from my new home in Vancouver!
Goodnight sweet sweet blogosphere. Thanks for listening.

On cloud nine!

thumbs up dude.

9 months of breathing easy, having adventures, looking towards a future, and being me again.

9 month assessment was today. Check, Check, Check. Bronch tomorrow.

BEST appointment ever. For the first time since transplant blood work has proven...dare I say it...NORMAL. My creatine is finally where I want it to be, I've been drinking water like CRAZY! so I would hope so...(imagine I had to get a kidney transplant on top of all this other mess! Oy)

My A1C is awesome! .056. Perfect diabetes control. Thank you insulin.
My White blood cell count is 4.6. Another ace in the hole.
My FEV 1 is up to 61% despite just having had the CMV virus.
My 6 minute walking test is up to 575 (?) 40 meters higher then last time!
My CT scan looks spic and span clean as a whistle.

and now for the grand puba of all pubas! (whats a puba?)
I'm allowed to go to.......WASHINGTON here I come. awwwwwwwwooo

man alive it's nice to be on this side of the tracks...things just get better and better. you lucky ducks who have been over here your whole life! haha

6 month lungiversary.

It's been six months since I was wheeled into surgery, going down the hall, waving hi, and bye, and nice to "meet" you to a fellow CF'er, A who had been transplanted a year and a half earlier.

I told my family to stop crying, suck it up, I'll be fine! waved goodbye, and said 'see ya on the other side'. I was wheeled into the operating room, and left talking to my anesthesiologist telling him my allergies to specific IV tapes, etc., and other nurses (who told me I would get my earrings back after the operation...I'm still waiting on that one. At least I got my glasses back! ha)

I remember waking up and remember being told just let the machine do the work for you. So I did. I tried not to panic, and just let this big thing in my mouth do the breathing for me. As my chest slowly rose and fell. It was hard breathing through that mouth intubator piece machine ordeal. I remember slipping in and out of sleep every couple of minutes. I don't even know how my ICU nurse knew I was awake, as my eyes were barely even open slits, and I certainly could not talk. My chest felt heavy, swollen, and I was totally drugged up. Out of my mind. It felt like there were multiple piles of bricks on my chest. It was so hard to breath through the machine, intubator because a. it's a tiny little tube that I think is down my throat, somehow making my chest breathe, so I'm fighting to breathe through that, PLUS they turned the machine down so that I'm doing like 90% of the work, while breathing through this smaller airway opening, so that they can make sure that my lungs will work on their own without the machine...it's not a very good measurement since it is SO much harder when they turn the machine down, almost off, yet you have this intubated tube still shoved down your throat.

Anyways I'm not sure where I was going with that little rant, but alas, it was my 6 month assessment this week. It went fairly well. My lung function was down a bit to 53% so they were worried that I might have rejection or infection. Results are in and I do not have rejection, I repeat I do NOT have rejection! WOO.

Infection takes a couple more days to get back, since they have to grow the biopsies from the bronchoscopy in a petree dish. I guess I was being lazy that day doing the breathing test? Hopefully in two weeks time my lung function is back up!

I also did my six minute walk test. I doubled my meters from October! I did 532, verses my measly 200 meters back in October at my 3 month assessment. 700 is 'normal' for someone my height and who has not gone through a lung operation. So almost there!

They also gave me the go ahead to start travelling in the US and Canada. First trip up, is out west in February! I'm uber pumped. I'm getting antsy to bust out these new lungs in the world.

ALSO another fun fantastic super neat thing...I ran a city block last weekend and tonight I ran up the movie theatre stairs (5 months ago, my physiotherapist on the ward, said, okay lets try the stairs, and I early fell over, he basically carried me up the flight of stairs, I was so weak...today... running up those babies...no big deal) and in to the building.

Finally at about 5 1/2 months my legs stopped aching and hips stopped pounding. They feel almost completely normally.

6 months and counting!

the man who gives the gift of breath...

This is an amazingly inspiring article. If you have doubts or are scared, just read this article. Hopefully some of your fears will be stroked, calmed and less worrisome, knowing this guy and his team, got my back. ha http://www.healthzone.ca/health/newsfeatures/article/768887--the-man-who-gives-the-gift-of-breath
This man, is part of the TGH crew. Here's hoping I get him as a surgeon, although I think they are all pretty great over there! Here's to research and modern medicine. Thank goodness!

Well a little update, today I did a six minute walk, my legs gave out at the end...weird? yes? I thought so! and was a bit embarrassed! ahah I guess all the lactic acid build up, and then sitting in a hospital for a week, with only the stationary bike to peddle on...did me in. I guess bootin' it for 6 minutes as fast as you can while they measure your meters meant that at the end of it...down went hattie haha...that's just me though, give it all or go home right? haha

Anyways the good news, I beat my meters from January! woo. AND I was wheeling a 20 pound (well felt like it) oxygen cart behind me while I did it! I mean really though, people who need O2 are not able to pull that thing around...what are they thinking really? It's like half the size of me, I've never seen anything so ridiculous for people who need O2 it's dumb.

I am still overwhelmed by the kind emails I get every day, from all sorts of different people! Even one of my best friend, my cystic sista's grandpa has been emailing me! shout out to L's GRAMPS! haha There really are truly some wonderful people in this world!

My aunt and uncle took me and my parents out for dinner to a GREAT restaurant last night. My Aunt was talking about how lonely it is for some people, one woman she knows, is very lonely despite having money....money can't buy you happiness...because sometimes at the end of the day, like that woman...you still end up eating dinner alone. I am so thankful that I never have to eat dinner alone.(or if I do eat dinner alone, it's by my own choice...I just need some hattie time! ha)
So thank you everyone for never letting me eat dinner alone!