2 year lung anniversary

Tomorrow is my 2 year lung-iversary. Read my post 3 days before transplant here. Read my 1 year lungiversary account here.

Can you believe it's been 2 years since they cut me open, scraped out my old disease lungs and put in these new healthy pink ones! Too much info? Did you forgot how I don't leave much to the imagination? It's been so long since I've updated this blog. You know that's a good sign! Nothing in my CF life needs updating. Don't think I could easily give up blogging though. Check out my Style Inspiration blog for updates here and there of adventures. Click here. 

This past long weekend, was the first weekend I spent OUT of the hospital in...YEARS. The last two were strapped up to IV medications, or chemotherapy, (last summer I had lymphoma). Two years ago tonight, who knew I would wake up ever so gently by the nurse to tell me "Hattie your new lungs are here..."

Man, that seems ages ago. My mind has slowly but surely started erasing a lot of those memories
As I'm typing this blog post out "What a fine life we are living" starts playing on my itunes. Isn't it funny how that happens?
Listen to the song here.

This past year has been the best year of my life. Who knew breathing could be so substantial in living? Ha. Who knew it took everything I had to live my life by doing medical routines...you never really know how bad it is when you're living it, until you experience how good life can be without all that medical stuff. I look back now and think...how did I do it? How do current CF patients do it? Everything CF patients have to deal with...no wonder people used to be in awe of everything me and my family went through...we went through hell, and you just never really know how bad it is, until your life suddenly becomes everything life should be. Freedom. Breath. Love. Strength. Euphoria.

Someone two years ago lost, probably the most wonderful person, I will ever know, because they were an organ donor. They saved my life. I did not know how I was going to make it to the following weekend. Coughing...oh god the coughing and hacking and breathlessness...I really did not know if I could go another week. My donor took my life from a little mud puddle, to being able to live on my own, to falling in love, to having a future. Thank you donor family. I'm so sorry your day is not as happy as mine is today.
Happy two year lung-iversary to me.
Thank you, thank you from the bottom of my heart, Donor family.
Today I worked out in 35 degree weather outside at a boot camp, I went swimming in my boyfriend's pool, I ate a healthy (non high fat diet) lunch. Donor you made that possible. You. Are. Amazing. I. Love. You. Rest in peace dear dear donor.

me in march putting my lungs to good use inWHISTLER BC. I got teary eyed at the top knowing this never would have been possible without my donor!

me and my manfriend, we did a lot of hiking! I swear I didn't stay up there the entire time, I put my new lungs to good use!

me and carly in vancouver

we went zip treking in whistler too!

i found the cure for diabetes....

I have found the cure for diabetes while living out here on the west coast....the cure requires you to leave your apt at 8am and don't come back till 5:30pm...what are you doing in all this time? Walking, walking, walking everywhere. I did have errands to run, dr's to see until 11am, so really it was only like 4 or 5 hours of walking, but ask me how much insulin I took yesterday, while I ate my ice cream, my hot chocolate, my pizza for lunch, my bagel for breakfast, and my sweet potato for dinner (all carbs and all usually requiring insulin) I took NOTHING all day. It was one of the nicest days ever not to get poked with every meal I had. My sugars all day long were 7.6 and 7.8mmol.
Take that diabetes, up your ziggy with a wa wa brush.

I went to the vancouver transplant clinic. They are really nice. Much smaller then Toronto, which I am enjoying since I'm impatient to get outside and do things, rather then sit in a blood lab, sit in a waiting room to see the dr. all this sitting around. I'm glad it's in an out. They see 6 patients a day in the morning. Super fast, compared to what I'm used to in Toronto.

In BC they've started practising putting all their patients on azithromax. I liked this idea immediately, since before transplant I was on azithromax for inflammation.
I have rejection...which essentially is inflammation. Why not go on azithromax to help stave off rejection? Hey if it was him, the dr. out here, he said he would want to go on it if he had a lung transplant. Why not try everything you can to keep these babies perfect, happy, healthy and pink?
So the acute rejection, coupled with this annoying nagging cough and little bit of sputum I've had, we decided to start me on azithromax. Perfect. Lovely.

My lung function yesterday was back up to 2.01liters. My WBC was back down to 8.5. My haemoglobin was at 105...the only thing I can complain about is my creatine, kidney function was running at 110. A smidge high for my liking.
Also for all you other cystics out here, my tac the last two weeks, they keep trying to raise it, but it's still staying at 4.7. Could it be the domperidone they started me on? flushing the tac out of me before it can get absorbed? Any thoughts, suggestions?

If you want to check out what we've been up to while being in Vancouver, head over to my non medical blog hattitude-hattitude.blogspot.com

best day ever

TOday is one of the best days ever.

I am leaving for BC in an hour for three months.

See ya in awhile Ontario. 

Thank you donor for making this possible.
Thank you family for supporting me through everything.

This is my first adventure...I've NEVER been away from home or my family for longer then two weeks.
It's quite a feeling to be healthy enough, strong enough to flee from your home province for three months.

I'll probably be updating my hattitude blog, which you can check out here www.hattitude-hattitude.blogspot.com for photos of our adventures etc.

eeeeek! one hour. wahooo

what have I been doing?

I went to quebec. (the family and me went to montebello for a couple days. we had amazing weather and the food...hoy boy those french know how to cook, maybe thats why I chose to date a french man) 

I started working on my Hattitude Jewellery Show (it's coming up so mark your calendars! November 26th and 27th at my house) 

My mom booked our vacation to barbados (i have not been with new lungs. I have not swum in the ocean, snorkled, or ran on the beach yet...EXCITED...insert girlish school yard scream here) 

I gave a speech to humberview high school on Organ Donation....that was awesome.

I booked my flight to Vancouver. (I'm beyond excited for this one. No scream will suffice. I am moving to vancouver for four months with Tristan. We are moving right down town. Subleasing an apartment. I heard cheese is hella expensive out there? Not sure how I will survive without cheese. I might have to pack a whole suitcase just dedicated to cheese! We plan on being in vancouver for 3 and 1/2 months, then for 2 weeks road tripping down through the states, seeing seattle, maybe go to San Francisco, then flying out of LAX airport home? Thats a pipe dream right now anyways. )

I started playing volleyball. (I joined a volleyball league. It is SO much fun. Each week I keep getting better and better, but I sure was no athlete at the beginning. Our team is made up with a bunch of people bringing other people. It's fun not knowing the whole team, but we have a great group of people so far. )


I honestly just can't wait for all these adventures. I've been feeling awesome, which is a great change. I have started going to yoga each week, and an exercise class as well. I cannot begin to tell you how wonderful it is to be able to do yoga again, without getting those darn oxygen deprivation headaches. How awesome it is to run and play volley ball and shout and not need to sleep for a million hours afterwards to keep up.

I cannot wait to move out to vancouver! tell me that isn't a crazy awesome adventure I never thought I would get to have! sigh....life is prettttyyy prettyyyy pretty freakin' awesome right about now... (man oh man...whisper that in my ear 16 months ago, and I would not have believed you, how spectacular life gets. How you fight like hell, go through hell....and then life throws ya a little piece of heaven. Karma?)

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!