Tuesday, December 14, 2010

Snowflakes.



Walking around the city this year...HUGE snowflakes. So different from last year, toting an oxygen tank, dreading the walk.
Bring it on winter. Me and my cousin in the winter wonderland.






All I want for Christmas this year is for these lungs to keep on working, breathing, pumping. Keep getting healthy. My house this weekend. There was so much snow, we had a power outage on Sunday night, thankfully all the Christmas cookies were already baked!

this too shall pass...

When I was in what felt like the depths of hell recovering after my transplant ...my good friend SH wrote on a piece of paper, "This too shall pass", so that I could look at that paper every day, every hour, every minute if need be...and this too would pass....

A family member passed away on the weekend from a house fire. He was so young. Too young. I did not know him very well, But from what I do remember he had the biggest smile you would ever see. I don't think anyone had a mean word to say against him.

I'm not a religious person, but I saw this quote last week "God never said life would be easy...he just said it would be worth it"...but seriously...his poor family, why does tragedy strike again and again in the same place. They lost their father to cancer a few years ago, and now their son, brother, cousin, friend....

I'm a firm believer that everything happens for a reason. But I'm just having a really hard time trying to see the reasoning for B's passing....
My heart grieves for everyone who knew him...I'm so sorry. Those words seem inadequate, barren, useless.....faulty. Rest in Peace.

Monday, December 13, 2010

forgetting to breathe

I was reading back over my blogs from a year ago...when I was really sick. Man oh man....breathing is SO easy now. I'm almost beginning to forget about the girl who wrote this post so long ago.....

Jan 2010
"It's hard though not to worry
about waiting three days for medicine, when your lungs feel sluggish. Like your chest is swimming against an undertow current. Moving your chest against this thick, thick, heavy, dark, enclosure of water, heavy quicksand and it's pushing, rushing, shoving, enveloping your lungs. You can't get breath down into the lower lobes of your lungs. You can't breathe deep enough to fill all the nooks and crannies that need to be filled for a simple inhale, exhale of breath. Just one breath that so many of us take for granted, and yet so many of us strive and struggle with...just a simple inhale, exhale leaves some of us breathless.

Sometimes it feels as if a piece of metal has been shoved in between your top lung lobes and your bottom lobes, scraping the tender pink tissues of your precious lungs, making a horrible mess inside, causing your tender lungs to bleed and exacerbate.
Your breath refuses to get down deep enough, won't get down deep enough, can't get down deep enough. Mix that, with the struggle to inhale breath into your lungs against the sluggish quicksand trying to drown you... and sometimes it's a little scary, a little overwhelming, a little daunting. There is nothing you can do about it, and you worry about getting sicker, you worry that the water will get so thick, that your chest will no longer be able to push out and thrive even a little bit against the pressure, and you worry about how much time your losing by not being put on drugs right away, because it's scary how fast CF can turn on you, it's scary how fast your lungs can decide to call it quits, they can't swim against that water anymore, it's too thick, it's too sluggish,and it's just too hard for them...it can turn in a day, without any regard for you. That's what it feels like sometimes in a bad moment, in a bad glimpse, in a bad breath...."

This weekend we had a snowstorm, power outage, the whole bit...so I closed my curtains to my apartment for the first time since last winter to try to keep the heat in....I remember struggling last year SO much to close those curtains because it would leave me breathless. This year, I did not struggle with being out of breath. Breathing through my nose.

Monday, December 6, 2010

original hardware

My grandma said to me this week, that I had not updated my blog, so this one is for G ma! (yes my grandma has a computer AND it's a mac. and she even texts!) It's been kind of slow in the CF and Lung world. Which is a good thing, cause my life has been SUPER busy outside of the hospital world.

Hattitude, my jewellery business (www.GotHattitude.com) is going crazy busy for the holidays. Everyone is christmas shopping. I have to get some new ones up on the site this week, they're all selling out for gifts.
I on the other hand still only have one present....GAH. It's not like I have not been looking, I just cannot seem to find anything good enough for everyone. I know, I know it's the thought that counts...but really come on... my family and friends have gone to the end of the earth and back for me this year. I don't know how I got so lucky, thus I would like if their presents could be just as good. Maybe I will wrap my chest up in a big bow, and stand under the Christmas tree and the lungs can be their gift? haha
This week I saw 127 hours, and it did lead to some inspiration as to what to get my brothers for Christmas.

We decorated the condo this week for Christmas! Our first christmas in the cityyyyy. (sort of, half the time I am there by myself, the other half it's just me and mom, but it's still fun to come home to a decorated place!) I cannot wait to get a tree for our house house though, and for it to smell like Christmas. This year I'll actually be able to enjoy going to cut the tree, instead of hauling my butt out the door begrudgingly in snow pants, and watching my brothers have a snowball fight, while I sit on the side lines, freezing, trying to catch a breath.

This weekend was the kick off start to Christmas parties. As I was sitting surrounded by all my family...I realized...GAH, this is the first Christmas without all my original hardware intact. I definitely last Christmas, was not thinking to myself, this'll be the last year with these lungs. I think about my donor all the time. I want to get my letter out to his family ( I think of my donor as a male...just some gut feeling I have) for this Christmas. It is going to be SUCH a lonely christmas without their loved one this season. My heart breaks for them.
I especially feel guilty because if my donor had not passed away, I would not be here...is it sick to be happy that someone else is dead?
No but that's not it...I am not at all happy that my donor is dead. I'm happy my family does not have to spend christmas without me, I'm happy I get to spend another Christmas and birthday (23 on the 23rd!) I'm happy I can dream of a future now, and that I am still here and BREATHING...but still I can't help but feel a little guilty that I am so happy to be alive while my donor was not so lucky. Especially at Christmas. It feels almost like yesterday that I was in the hospital. That four months ago, I could not even walk let alone carry a purse, or pour a glass of juice. The human body is amazing how it can recuperate, rejuvenate and breathe. I am carrying around a HUGE purse now. Loving that everything fits in to one place. I wear a big winter wool coat with pleasure, and I pour my own juice...haha

Five months yesterday and I was waking up to a nurse saying, "Hattie...your lungs are here". Thank you thank you thank you.

Wednesday, November 24, 2010

broken record

I started working on a new winter collection of Hattitude jewellery www.GotHattitude.com. It was a bit hard initially, putting the pliers and wires up real close to my face ( I could not see well after transplant) and then of course the shaky hands (which were real bad due to the meds after transplant), it proved for a challenging work day on jewellery. The last month though I got a new prescription, and the shakes have calmed down, so I've been able to work better. The condo was good for working and catching the light in my photo shoot....although I wish it had of been a bit more sunny, but that's November for ya.

My tac level was through the roof the other day...so they've lowered my dose, and my white blood cell count was down to 2.8...at 2 they start to panic, I guess it's pretty much like I'm walking around totally defenseless against colds/flu/viruses etc. So they backed off on another pill, hoping to bring my WB cells up a bit...but not to much, since the whole point is to not have an immune system so that I do not reject these lungs.

I don't want to sound like a broken record, but it's sometimes hard for even me to remember, because I get feeling so well, and think everything is dandy, and start doing things I probably should not be doing...but please if you have any symptoms of a cold, or were just in close contact with someone who was sick, please don't come near me...I'm totally defenseless now and it realllyyyyyy would suck to get sick and wind up in the hospital on IV's or something...so I appreciate it soo very very much, just if you are sick stay away from me for a bit. Thanks! My new lungs say thanks too!

Sunday, November 21, 2010

Natalia's one year

Today is Natalia's one year anniversary. This time last year at the eleventh hour, Natalia (www.natanadmarty.blogspot.com) got her lungs. She has helped me so much through my transplant and I appreciate it! She's calmed my worries and was one of the people who made me feel normal.

She could not have said it more beautifully, "A year ago today I received the greatest gift, from a special lady that I never knew. Today I have the beauty of easy breathing, the gift of time, and the possibility of the future." Well said friend. Go Go Natalia and ALL the other wonderful amazing warriors out there. Thank you to all of our donors for allowing us to live.

Thursday, November 18, 2010

could you un zip me please?

Today I feel as if the surgeons sewed me up to tight.
The incision is aching to be zipped open and the tightness released.

Monday we asked the team about traveling to Barbados, my home away from home... found out....this will be the first FULL winter in Canada...shudder. They do not advise me traveling before a year. So next July, my trip to Ireland will be my first with these new guys.

A whole winter in Canada...I can't even skip outta town to Florida they said...we shall see how this girl fares.
I guess I'd better start looking for the perfect Snowman hat.....I'll be building a lot of snowmen....maybe even a snowfamily? Is there snow in the city? or just slush? a slushman? doesn't have the same ring to it. At least so far this winter has been nice! Not too chilllyyy.

Thursday, November 11, 2010

Toronto living?

What to do...move back home in January or continue living in the city? That is the question.

I'm almost 23 years old. Most of all my friends are now living in the city. I'm single. I hate driving. I love concerts and live music. I want to use these lungs, and walk and explore and do things. The city gives me this opportunity...but maybe the city sucks in the winter? Is it too cold to go out? Do I want to be back home to the country, surrounded by the snow, that I used to once dread?
I am actually looking forward to stomping through the deep snow this year, wearing all the heavy gear, and not getting out of breath. I can't wait to build a snow fort, roll my own snow balls and have a snow ball fight without getting winded.

Today I was able to do a low, low squat and used just my fingertips on my one hand to get up from the ground. Thighs are greatly improved. I'm up to lifting 9 lbs weights ( after transplant I was only doing 2lb) I'm thinking about taking up yoga soon. I think things are healing nicely and I miss being able to touch my toes. Things are stiff after transplant. Someone in the treadmill room told me if you lay in bed each day after surgery you lose 3% of your muscle mass. If I laid in bed for 30+ days, that's 90% of my muscle mass...no wonder I was such a mess after transplant.

Today I cleaned the condo. I did the dishes, swept the floor, cleaned the washroom, put away months of clothing, stripped the bed, did the laundry...then I sat down and realized I did all of that without getting out of breath. There used to be a time when putting a load of laundry into the machine would leave me gasping for air. Now...nothing.

On Tuesday I went back to CF clinic for a check up, and I blew my highest lung function to date on a hospital machine. 2.03 liters. 58%. These babies love me. I am lucky lucky lucky. Thank you.

Wednesday, November 10, 2010

donor letter

Today I sat down...turned on some Bon Iver, Sigur Ros and other musical tunes of similar genre and I wrote. I wrote to my donor family. I wrote about love, laughter, and life. About what my life was like before transplant, what I my life has been like after transplant, and how my donor saved me. I wrote about how thankful I am that they honoured their loved ones wishes and donated their organs. I wrote and I wrote and I wrote. I hate that they are grieving.
It is just the first draft of the letter...but I have been thinking about writing my letter for a long time, so it was nice to finally put some thoughts to paper.

Monday, November 8, 2010

fog of unhappiness

ugh today is a slump day...I feel in this cloud of sadness...I feel bogged down. Maybe it's because I went to visit someone who just got transplanted in step down unit today...walking through those doors...bad memories. Bad bad memories. I don't ever want to imagine being back there. That time in my life was the worst....so scary, so awful, so so so so so hard....hell and back again.

Gotta shake this feeling. Surround myself in happy thoughts.
#1 happy thought of today....I am seeing an old friend from University on Saturday! wrap myself in THAT feeling of goodness to get out of this funk!

Saturday, November 6, 2010

note to self

If you've just had a double lung transplant...where a new organ from a generous person just saved your life....DO NOT I repeat DO NOT watch repo men. A movie all about taking back people's organ's when they cannot make the payments....repossess your home...why not your new organs too...shudder....better not have nightmares tonight.

Friday, November 5, 2010

cinderella




Cinderelly, Cinderelly
Night and day it's Cinderelly
Make the fire, fix the breakfast
Wash the dishes, do the mopping


I was Cinderella this year for Halloween. My FAVORITE time of year. My good friend was Jasmine, the other Disney princess. We did have a Belle, Disney princess but my other friend got sick, and thus could not make it out to Halloween this year. So just the two Disney princesses made an appearance.
I'm not sure why Halloween is my favourite time of year. Perhaps it's because you get to dress up as a princess, a fairy, and all things magical. How I wish this world was filled with magic. (sometimes I think it is...I mean new lungs, your old ones gone? that seems pretty magical to me?)
This Halloween when I spilt my cranberry juice on the floor...I took no greater pleasure in bending down and wiping up my mess with some paper towels....WITHOUT getting out of breath.





Friday, October 29, 2010

boo.halloween weekend.

What do you get when you cross a vampire with a snowman?






wait for it.................






A FROST BITE
baahahah thanks dad.
Halloween is my favourite time of year.

This is me last year. I went to a halloween wedding. This year I get to dance with new lungs..and go without the whole picc line in my arm. yay to this halloween!


This is me two years ago as raggedy ann.


This is me three years ago as a 1920's flapper (my favourite era).

stay tuned for me this year....i'm going as cinderella! Two of my other girlfriends and I are all dressing up as the disney princesses. We've got a Jasimine, a Belle, and a Cinderella. Two of my favourite things...halloween, AND disney characters...am I an 8 year old in a 23 year old's body disgused as an 80 year old? perhaps. haha
I have this 1940's big old vintage blue ballgown, which is the perfect cinderella dress. I got a wig, and some ribbon, some gloves, and it's set. The only kicker...no glass slippers...those are hard to come by...I still have trouble walking anyways, (but i'm improving on the treadmill at physio each week, and they say I only have to keep coming for a few more weeks!) so its best I just wear comfortable shoes, no one can see my shoes under the gown anyways.
On the lung front, things are going good. I went to the grocery store the other night, with the wind and rain HOWLING (getting ready for halloween probably...) and I was able to run across the parking lot to get out of the rain...as I got inside....no breath was missing, not a beat. It was wonderful. Thank you donor. Thank you science.

Friday, October 22, 2010

wild in the city

I blew a 2.01 liters on my home spirometer this morning! holy holy holy a new record. 2 liters. I have 2 liters of air to fill inside this chest of mine. 2 liters of air to sing in the shower with.

CF fashion show after shock party tonight.
Girls Gone Wild.
In the big city.

Thursday, October 21, 2010

low globe.

shoot....today is a not a good day.
I am so exhausted. I think there is a permanent grove of my butt imprint on the couch. I've taken it hostage for the day.
My coordinator called me and told me my hemoglobin is back down to 79...ugh. I feel drugged as if someone has shot me up with gravol.

Monday, October 18, 2010

drum roll please....

Last friday I got the results back from my bronchscopy..............

NOOOO REJECTION!

these lungs must like me.

woo.

electric shock therapy...all the cool kids are doing it

On Thursday I spent the afternoon in a torture chamber! I went for a neurology appt. for my weird leg condition....little did I know it was a disguise for a torture chamber. Halloween came early.
I have never been through so much pain in my life. I had to tell them "hey I've just had a double lung transplant and that did not even hurt as much as this, you HAVE to stop"

First they started off with electric shocks, well those were not too bad...I mean I've had my chest cracked open, so a few shocks...yes they hurt...and yes I jumped with every single shock, I was afraid I was going to kick the woman! but I grinned my teeth and bared that part of the test for two hours....next came in the big guns, the big cahoona doctor and he said 'yes I needed to do the next part of the test which is "uncomfortable"'...they stuck needles and twisted them in to my muscles and nerves....I have been to hell and back and I don't rememebr having tears streaming down my face from any pain in the last few months....yet here I was being 'tortured' and I had the whole water works going. I was even hyperventilating I was in so much pain. And the outcome of the day...."it's not permanent nerve damage, there seems to be no new nerve damage. It looks like old nerve damage and is repairing itself, so not to worry, it seems just like ICU neuropathy "......are you kidding me? sigh....so much pain, for something my transplant doctor already figured it was, since I spent so long in ICU...but I guess they had to determine whether it was something more serious. Thankfully it is not, and it's begun to heal itself. This really is such a long journey.

Things I appreciated doing since transplant this weekend
- squatting while using public washrooms and not being out of breath (i'm a total germ freak and using the public washrooms pre tx was not cool)
- packing my suitcase for a weekend away and using only ONE bag- goodbye medicines, machines and IV poles
- carrying bags from the car to the cottage walking up the slight incline driveway and not getting out of breath

Monday, October 11, 2010

Gobble Gobble

Thanksgiving has taken on a whole new term for me this year. I am so thankful that I am here, breathing, living, laughing, enjoying. Thank you. Thank you is not even enough of a word. Thank you donor. I'm so sorry your family has to spend this holiday with out you....but thank you for allowing my family to spend it with me.

Things I am thankful for:
My cottage
hilly sand dunes (wouldn't have put that one last year!)
my family
my family
my family
Canada and it's health care system
Dr. Shaf Keshavjee, Head lung transplant surgeon (he did my new pair!)
flea markets (I got to the famous one this weekend by the cott)
vintage finds
Ireland and all it's beauty (next summer swin!)
hot apple cider
cold weather....(even though my sternum now screams in agony with it...but it means I am here for another season...it also means Barbados vacation can't be too far off! right mom? dad? haha)
my friends
my friends
my friends you are beautiful.

Take a moment close your eyes....and breathe down in to the bottom of your lungs because you can (and I can too!)
This thanksgiving I made it up to my cottage for the first time in over a year! I forgot how cute it was. I carried my cat down to the beach, because I could...I climbed the sand dunes...because I could....I carried pillows and cushions to outdoor seats, because I could. I kept waiting, and waiting to feel that winded breathlessness that used to come when I exerted myself on the exact same activities last year...but it never came. It never came. It was so weird to be able to do all those things....I kept walking down to the beach on the path and waiting for the breathlessness to come...thinking, is this what everyone else has been doing? but it's so easy. too easy? Ah Breathing...you still marvel me.

Friday, October 1, 2010

Statistics for a second chance

Last year they did 98 lung transplants. This year so far they have done 62 lung transplants. Their goal this year was to do 120 lung transplants. It's October 1st today...and they're just half way to their goal. There are so many people who are waiting for new lungs, and so many people dying all the time, with organs just going to waste while someone else just waits. Gah it's so frustrating that not many people know about organ donation, or give it much thought until it's staring at them in the face, looking down the ol' gun barrel. That every 3 days someone dies waiting for an organ. Check out this website recycleme.org
This has not been a good year to get listed for new lungs it seems. They only did 6 lung transplants in July when I received mine. I am so grateful every day when I hear that number, I'm lucky I got my pair.
It's also a little scary because so far out of those 62 lung transplants that have been done...2 people have died either in surgery or shortly after....YIKES. Thank gosh I found out that number AFTER I've had the surgery...after I've been to hell and back...

There is one family I met in clinic, who's son is around 26, and received a liver transplant. They had five months to digest the fact that he needed a new liver. They had never even given any thought to organ donation until it was right in their back yard. Which is the same with so many people I think. Until you know someone, love someone, befriend someone who needs a second chance....do you really give it a second thought? Do you really think about your own death and what you'll do with your organs after wards? The Star has a great idea in getting people involved. If you don't know someone personally who is needing an organ donation, which is most of the population, you can certainly fall in "like" with them through reading about them. The Star started featuring and promoting people waiting for organ donation and their stories. If people see that it's real people waiting for new organs, if they hear their story, if they see how they live...they fall in 'like' with them. They'll register their forms, or tell their loved ones they want to be organ donors.

Only 4% of Torontonians have registered to become organ donors. Scary. I don't think it's because only 4% are willing to become someone's hero. I think it's because they just have not taken the time to fill out the form. How many people in this city?.... And 4% are registered.

Wouldn't it be awesome if you could be someone's hero? If you could rock someone's world? Save their life? Stop a mother's tears? Hush a husbands fears? Be daddy's little girl again? Listen to a brothers dreams once more? See your child grow beyond? Hear a friends laughter twice over? Wouldn't it be crazy wild.... to save that someone's life. Wouldn't it be crazy wild to let them live again.

My donor is my idol, my rockstar, my world, my victor, my champion, my everything. They let me live again. Let me breathe. Let me begin to imagine a normal life. Let me even fathom doing things that every 23 year old girl doesn't even think twice about. Concerts, dancing, blind dates, movies, dinners, friends, laughter,walking, swimming, cottaging, bonfires. Donor you're my hero. www.giftoflife.on.ca

Tuesday, September 28, 2010

1 happy girl

2 new lungs
3 weeks in ICU
36 days in hospital
52 percent lung function
90 days after surgery
= 1 happy girl.


Three months yesterday!
52 percent lung function, 1.79 liters is what I blew at the pft lab. All in all it was a good appointment. My hemoglobin has finally stabilized at 81, still on the low side, but hopefully now that it is stable, it will begin to rejuvenate cells and climb higher. Kidney's need to fix themselves next, they're still running higher then they should be.
They think my foot drop could be from the 3 weeks I spent in ICU, and the nerve coiling or something like that, causing damage. It will just take time, and muscle rebuilding. sigh. It's frustrating only being able to walk for 5 minutes or so, and then stop so I don't crumble over while I clomp clomp along like a horse. I have these great new lungs now, and it's my body that's holding me back! Quite the opposite from 6 months ago!

Friday, September 24, 2010

foot drop


Yesterday I went to Wards Island. It was a beautiful day. Our adventures started out right away, since of course we got on the wrong ferry, (perhaps our excitement of me being able to breathe and do these things, left our brains a bit frazzled) as we stepped off the boat on to center island instead of wards, and did not realize it, until a South Korean family was telling the Canadians where they were haha. We even
tually got it figured out, but not before we had lunch with the South Korean family. A couple and their son invited us to have lunch with them. The parents could not speak any english, but their son was over studying english from South Korea, and they were visiting him. Humour transcends language barriers most definitely, as this little Korean woman was sooo funny and loved to laugh.

On center island I sat on a swing for the first time in years...and I pumped my legs...and I breathed through my nose as I did it, back and forth, back and forth. Perhaps I need to go back and do all the child hood things that I could never do, or never appreciated 15 years ago when I was doing them....running on the beach, swinging on swings...next up....building sand castles? three legged races?

It sure felt wonderful as I pumped my legs back and forth, back and forth, and did it all without breaking out into a wind tunnel of gasping air through my mouth, or an oxygen deprived headache....no I just sat there pumping my legs, feeling the air whooshing past me for the first time in years...just like I did when I was younger before CF took my lungs on a permanent vacation. They always say children know a secret...that kindergarten children laugh the most times a day out of everyone....perhaps they know the secret...Perhaps it takes doing childlike things again to appreciate the gift I've been given.

This is a photo I took at Wards Island...which is a bit like stumbling upon a hidden munchkin other world/land with all the quaint cottages....It was so neat. This photo is looking back at the city...cool how it's in the clouds. I miss my cottage.

As for my health, the breathing is still going beautifully. I blew my highest lung function to date this morning on my home spirometer, 1.76 liters. I found out today at physio that I have something called 'foot drop' which is why I keep clomping my feet along....walking in general funny and using my hips instead of my feet to walk, which is also probably why my hips have been aching, since I'm compensating for the lack of feet walking. I'm not sure whether this foot drop is caused by medicine, since it seems to have developed in the last few weeks, or whether is is nerve damage from the surgery...I'm hoping it's medicine induced and can therefore be fixed quicker. The strengthening exercises the physio gave to me are killer...really, really hard to do as my foot feels disconnected from my legs...so to make them work is a huge effort....but whats one more little bump in the road, as long as these lungs keep being able to swing!

I leave you with a photo of me at Cherry beach, where they have the best chip truck in the world! (hamburgers are pretty good too!)


Tuesday, September 14, 2010

fashion show is up!

It's up, its up, it's up! You can now see the fashion show online at www.cfforcf.com. Ah what a beautiful night that was! The golf course looked like it had been transformed into a Paris runway! The show was amazing!

Monday, September 13, 2010

ashbridges bay beach

today I ran....well it was more then a walk, but perhaps less then a run? on the beach today. I hobbled my way in to a run, as my thighs and calves are still pretty weak, but I did it! and I did it without getting out of breath. hallelujah world. I have my life back.

Clinic went great today. I blew 48%, 1.64liters. The highest yet. I saw one of my surgeons who is the cutest little brazilian man ever. He was always there for me during the horrible weeks in ICU. Today I told my mom she did a good job convincing me that she didnt believe I was going to die, when I was so insistant that I was going to die...TWICE during the first two weeks after transplant. She said I know I should win a prize for that.
My other surgeon today said, look how well hattie is doing considering all the problems she had at the beginning...man transplant was not fun the first few weeks....shudder

Today I graduated to every 2 week clinic appointments and I have not even had my three month assessment yet! things are going pretty well, still a few kinks to work out with my blood and kidneys but all in all good...and lindsay tells me the hobble run is making a comeback haha

Saturday, September 11, 2010

beginning to feel normal

I'm finally beginning to feel normal again. Before transplant my life was bombarded with hospital visits, oxygen tubes, coughing fits, and IV lines....I could not remember what life was like to go out with friends, life without having a curfew to get back for meds, what it was like to get in to a car without getting out of breath. I could not walk down the driveway without feeling as if I had run a marathon. I love to dance, and I had not been dancing in years...I cannot wait for the day that I can finally go out dancing again. Won't be long now. I get stronger every day.

Today climbing in to the car, no longer leaves me breathless. Today turning over, grabbing a pillow in bed, no longer leaves me gasping. Today I am living because of a selfless gift. Today I am living because someone decided to honour their loved ones wishes and donate their organs. Today I walk up the stairs (yes I can now walk up the stairs without holding on to the railing, still weak, but I'm doing it) and the only out of breath I get is from the effort it takes because my legs are weak, not from lack of oxygen or only having 12% lung function.
I now am able to make plans more then a day in advance, not having to worry, 'oh well I might be sick then. I can't make that, can't commit to that' CF changes to fast, I could never make plans a month in advance. Now I am able to make plans far in advance...It's a very weird feeling. Its weird and hard for me to think and make future plans, as I have not been able to do that for YEARS now.

Today I walk into my apartment and no longer hearing the humming of the massive oxygen machine, the dripping of the IV medicine, or the annoying fridge hum (yes we finally got it fixed! haha) all I hear is the outside leaves rustling in the wind, and then of course coming up behind me a little meow as my cat comes to see what I am doing. I cannot wait for the day that I can pick her up (she weighs more then 10 pounds and therefore I can not pick her up until after three months). I remember I used to judge on how sick I was getting on a scale of breathlessness when picking up Beau...I was 22 years old and did not even want to bend down to fill my cats water bowl with water because it left me breathless. I'll be 23 in a couple months. 23 on the 23rd of December. My champagne birthday. What a year this has been for me. It still boggles my mind that I got a lung transplant at the age of 22. It still boggles my mind that they can do lung transplants. I'm so grateful I did not have to die from this debilitating disease. I'm just so sorry that someone else had to die so that I could live. But living I am doing. I went out with my girlfriends last night....and to begin to feel normal is so wonderful. It won't be long now. I just need to build up my leg muscles still. My kidneys are still functioning high and they are sending me to a hematologist as they cannot seem to figure out what is going on with my blood....as I cannot keep getting blood transfusions week after week. My headaches have subsided. For awhile there it felt as if someone had thrown a tomahawk into the top of my skull. They also told me why I have been so cold after transplant, (on the 30+ days out I would still wrap myself in a wool blanket) they said it was because I was not used to having oxygen coursing through my whole body. I make oxygen on my own....no longer is my outfit defined by my nasal prongs....

I blew a 1.61 liters on my home spirometer this morning. I blew at clinic 1.52 liters on monday, 44%....slow and steady wins the race. I'm sure it will improve more once my leg muscles build up and I can work my lungs harder. For now I am just enjoying getting back into being normal, and making plans far in advance because I can....sigh...thank you thank you thank you!

Monday, September 6, 2010

A Summer For Hattie

Incase you have not seen the fundraising all summer long that the 'Lady Team' did. They raised in total with the night of the fashion show over 30,000 dollars to help make CF stand for cure found!
I know everyone is super eager towatch the fashion show itself, and it should be up soon, we promise! (I saw it already, and it's even better the second time round if that's possible! haha)

taking up knitting


I've decided to take up knitting. Its kind of boring all this waiting...and TV is getting a little tiresome, and reading is still a bit difficult as my brain is still sometimes fuzzy.....so knitting seemed like a good idea. My moms friend is a really good knitter and has knit all these awesome sweaters. My goal is to make this jumper or a jumper this one is pretty complex haha but hey you gotta dream big. My fingers are already sore and I'm just practicing. My loops are too big, tension is not the same....but at least it will give me something to do as I recover in the city.

Its weird thinking about making warm sweaters, I saw an add for a Christmas CD on TV yesterday and I thought why the heck are they showing Christmas stuff already...oh because its September, Christmas is coming....yet my brain is still stuck back in April when I first got hospitalized for five weeks and my slippery slope of sickness began...therefore I still keep waiting for summer to come. Its a very weird feeling to experience 'missing' a whole season and to have your brain and thought process stuck six months back.

I'm now experiencing splitting headaches, as if someone has taken a tomahawk and thrown it into the top of my head. They are quite bad in the evenings, but at least the nausea has disappeared. I got a blood transfusion on Friday and have felt way more energy since! They still do not know why my hemoglobin keeps dropping uncontrollably....hopefully at Wednesday's clinic they will have figured it out! Being poked and pricked all the time is really starting to wear thin. Not fun. My veins are starting to notice and disappear I think ahah the one nurse asked me "are you a good poke" to which I retorted.."no...are you a good poke" lol...sigh if anyone has any tricks on how to grow one's veins I'm all ears.

It still blows my mind that I am breathing. Walking up the stairs is getting way easier as is walking around the house. I now almost look normal walking, no more crippled for the most part. Running is up next! Man that still freaks me out!

Thursday, September 2, 2010

1.57 liters! I keep climbing!

Thanks to my dear friend Kim, and to the CCFF peel volunteers who were able to get me a spirometer. A state of the art spirometer. Its a breathing machine at home that measures my lung capacity. I have heard that the ones the other transplant folks use are not very accurate or good, but mine seems to be dead on the money. I compared it to the big machine at TGH and it shows the same liters. I think the other non accurate spirometers are technology from when they first started doing transplants 20 years ago, so technology has greatly improved. This little one that the company gave me is so cute and tiny. Today I blew my highest lung function to date, 1.57 liters! I started off at 1.22 liters, four weeks ago, and am trying by the end of it all to reach 3.5 liters, for someone my size and weight that is where I should be. Hopefully these lungs have it in them.
Right now my mom is sick so shes staying away from me while she fights this little head cold. Thanks to M and N who have been coming in and staying with me while mom is sick and dad is working.
I did blood work early this morning because my hemoglobin has kept dropping. Last clinic appt. it was at 74, I was blood transfused in the hospital at 65, and 85, i think normal is around 120. My body seems to not be producing blood cells very well. Today it was low again, so I have to go in tomorrow for a blood transfusion....wump wump. but at least it will give me some energy, having low blood cells is making me tired.
Physio is going well. My sprained ankle is almost all better, so i was able to go on the treadmill yesterday and i can get up out of the seat without using my arms. woo. I am also up to 5 pound weights lifting with arms. I started off at 2 pounders. Im getting there!
Theres another great article in the newspaper about the fashion show!
you can also view a summer for hattie video on the website at www.cfforcf.com and you should be able to view the fashion show fully on friday!
p.s. happy birthday emma! Sweet 16!!!

Rockin’ the runway for Hattie
Thursday September 2 2010 By Matthew Strader, Enterprise Staff
Couture fashion captured the eyes (including jewelry by ‘You’ve Got Hattitude,’ seen above), but lending help to Cystic Fibrosis sufferers dominated the evening at the Couture Fashion for a Cure Found fundraiser at the Glen?Eagle Golf Club on August 26. Matthew Strader photo

Lay down, stop breathing, take out two major organs, have them replaced, recover, exercise, breathe, vomit, learn to walk again, see through the fog of medication, exercise, breathe, vomit, strain to make your muscles work, breathe, exercise, vomit, stand up, breathe….

Okay?

Now found a fashion show fundraiser for 350 people.

Hattie Dunstan did. And with the help of her friends and family, the Canadian Cystic Fibrosis (CF) Foundation is $30,412.69 richer.

“This evening was started by allowing ourselves to dream,” Kim Alderdice, friend to Dunstan and director of the fashion show told the crowd of onlookers at the Couture Fashion For a Cure Found (CFforCF) show on August 26 at Glen Eagle Golf Club. “The creation of this event was built on Hattie imagining she could do something to help Cystic Fibrosis research in Canada, knowing her friends would be willing to help and support her, and like any fashionista, she wanted to produce her very own fashion show.” Dunstan said the idea for the fashion show began, like many other ideas, through a little copying.

“I participated in another fashion show fundraiser in March,” she said. “What a great opportunity to raise funds and awareness about CF and also do something I love… fashion.”

She said she had no idea what was about to happen. That she wasn’t aware the friends and family she inspired would be so dedicated to building success through their generosity and commitment. The first paragraph of this story is not simply for artistic effect. In essence, it’s a day in the life of a 22-year-old Caledon girl who had to endure a double lung transplant in order to survive CF. She did.

The operation was a success, Dunstan was given the gift of life on July 5, and now fashions the hope that her inspiration and her friends and families efforts will tackle the problems another CF sufferer might face before they have to suffer them.

“Here’s to new lungs, to fashion, to donors, to designers, to the community and beyond, to doctors, to science, to new styles and clothing trends, to the selfless people who made this all happen,” Dunstan wrote in her founders note.

This summer has seen her foundation, dubbed “Hattie’s Crew” by The Enterprise, put on a fundraising raffle, market booths, flower sales, bottle drives and the culmination, the CFforCF show, raising the aforementioned $30,000 and increasing awareness about organ donation and CF through smiles, information packages, and genuine care.

They involved an entire community in their cause.

And the community responded in spades.

All they say now is thank you.

Thank you to their premier, and executive sponsors. The businesses that lent support that without they would not have been able to complete their goals. The Kinsmen for volunteer efforts. The eight local fashion houses that donated clothing for the runway. And, to Scotia Bank volunteers who helped with their silent auction and raffle, and will donate their own cheque of $5,000 to the cause after a promise to match figures raised up to $5,000.

But most of all, they need to mention and thank the entire crew.

Hattie Dunstan (founder and inspiration), Kim Alderdice (director and co-ordinator), Rachael Grice (events co-ordinator), Lindsay Bishop (media/program design), Nikki Bettinelli (graphic designer), KC Heenan (MC and store liaison), Brittany Bolton (backstage manager), Kyla Zanardi (local media liaison), Steph Bertolin (sponsor liaison), Nicole Mcginn (stylist), Lauren Wak (decorator), Katherine McCool, Tasha Potter, Carly Gordon, Natasha Sicondolfo and Danielle Venditello.

For now, Dunstan will keep exercising, keep working her body to get used to her new lungs, and keep designing.

She’s also still dreaming.

“It’s just an idea,” she said. “But we thought because it’s so expensive after transplant, and a lot of people come from out of province and they need a place to stay that we need an apartment building downtown for transplant patients.

Equipped with subsidized apartments, information and resources, the dream for the building is a place for those who don’t need to occupy the time they need to spend healing doing research just to have a place to stay.

“We just want to help those families out. We found (during her own ordeal) there wasn’t a resource person, luckily my mom doesn’t work so she could do it all herself. But we want something in place to help those families.”

You can view the “Summer for Hattie” video on the website www.cfforcf.com and the video of the fashion show will be posted in early September.

And if your eye is drawn by continued stories of courage, humour and inspiration, follow Dunstan’s own blog at: icecreammaplesyrup.blogspot.com.

Saturday, August 28, 2010

Fashion Show

The fashion show was amazing!!!!! oh it was everything and more I ever dreamed of! I was blown away.
The video is not up yet, but keep checking www.cfforcf.com. It should be posted soon and trust me you will want to watch it. It was amazing! The models, the volunteers, the guests, Kim thank you thank you thank you times a million for making the night the huge success that it was! I was floored. You guys owned the night. I cannot get over how professional the models were. Thank you Cathy model coach, truly you are amazing! KC you rocked as the MC my love. I knew from the get go you would shine. I just had to convince you! haha
Thursday night was magical. I can't get over it.

On Friday I also got some more great news from my bronch on Tuesday I have no rejection and no bacteria growing so far! awoohoo. Life is good my friends, life is great!

Thursday, August 26, 2010

7 weeks

7 weeks and i'm breathing easy....7 weeks and someone else is grieving.
I'm so sorry to my donor family for your loss. I hope that they take comfort that I am doing so well...I hope they realize that by donating their loved ones organs they saved my life. They allowed my family and friends not to grieve....

I'm so grateful to lay awake in bed and breathe deep. No crackles of mucus, so loud keeping me awake at night, no struggles through my mouth for breath...just nice smooth flow through my nose...I'm breathing...it sometimes catches me off guard. It sometimes is still hard to believe.

My clinic appointment on monday went well again. I am holding strong at 40% my x ray continues to improve, the only thing we have to work on is my kidney levels...they don't seem to be working properly which we think is due to being dehydrated from all the drugs. I'm also quite nauseous (throwing up is not fun every day!) all the time, also have some headaches...so we have to fix that. If those are the only things I have to complain about after going through a HUGE surgery then I think I am pretty lucky.
I am keeping up with physio and now can stand up from a chair without using my arms, thighs are getting stronger.

I had a bronchcscopy on tuesday. They drug you up, and stick a scope down in to your lungs and take snippets of the lungs to see if you are growing any bacteria or have rejection of the lungs. I felt every snippet this time, and kept raising my hand for more drugs.....but they never came, so all three snippets were felt, ouch ouch ouchie. My pain tolerance is getting high these days.

The fashion show is today today today today today!!!! soooo exciting!You can check out the video of it, either live tonight, or tomorrow online at www.cfforcf.com. Everyone has been working sooo hard and now today is it!!! bah six months in the making, and soo much has happened! I was listed for a double lung transplant, AND got new lungs all in the time that this show was pulled together!!!

Matthew Strader you are amazing! An article was put out by the enterprise this morning about the show and "summer for hattie". You can check out the article online by clicking here or read below.

Ninety pounds of inspiration - one life changing hour
Wednesday August 25 2010 By Matthew Strader, Enterprise Staff
Hattie Dunstan poses with good friend Kim Alderdice on the patio of a family friend’s condo in downtown Toronto. Dunstan is recovering from a double lung transplant she endured on Monday, July 5. Matthew Strader photo

Every now and then someone can change another person’s life. Sometimes they inspire. Sometimes they educate. Sometimes, they don’t even try.

And the ever-growing story of Hattie Dunstan is one of those ever-growing circuses of life-changing moments – and all this Caledon girl is trying to do is take one long walk on the beach.

Dunstan is a Cystic Fibrosis sufferer recovering at a friend’s condo in downtown Toronto from a double lung transplant performed on?July 5.

This diminutive, and yet formidable Caledon resident has faced a medical challenge this summer that could topple any character, and through it all, she has maintained.

Her unbreakable spirit, her passion for life, permeates everything she does, every word she speaks, and every person she keeps in her life.

So overwhelming is the love that she has nurtured with her family and friends during her 22 years, that her trial has turned into their mission.

‘The Summer for Hattie’ has become a town-wide push for Cystic Fibrosis fundraising and organ donation awareness that has seen groups of 20-50 friends and family get together for bottle drives, car washes, mock-fashion events, flower sales and the piece de resistance… ‘The Couture Fashion For a Cure Found’ show that will happen tonight, August 26, at the Glen Eagle Golf Club.

For The Enterprise, it began with two girls in the lobby.

Kim Alderdice and Rachael Grice made an appearance asking for coverage of their first event, ‘The Mainstreet Strut’. A mock fashion show and auction that saw them turn a downtown Bolton location into a raucous mix of firemen being auctioned off for yard work, and friends taking to the stage to strut in silly costumes and entertain a boisterous crowd. Both of the girls admitted openly that they didn’t know what they were doing, just that they had a friend named Hattie who had inspired them to try.

It is only three months later and Alderdice is a model of organization and co-ordination. Grice is an experienced MC and host. The group of girls working with them is a well-oiled machine that has not only put on the events they imagined, but surpassed their own, and anyone else’s expectations with their success.

‘The Mainstreet Strut’ raised $4,604.93 for the Canadian Cystic Fibrosis Foundation.

Their two charity car washes have raised $770.39, and $600.75.

A recent bottle drive pulled in, in excess of $1,000.

And flower sales are topping the $500 mark.

Hattie’s crew has gone from a group of rookies, to seasoned philanthropic veterans.

And still, talk to any of them and it remains about one thing. It is for one thing. It is because of one thing.

“It’s because of Hattie,” Alderdice told The Enterprise. “It isn’t even because she’s suffering from this disease. It’s because she’s an important part of all of our lives.”

Dunstan spoke to The Enterprise from a condo in downtown Toronto where she continues her recovery.

She is a shell of the girl seen in pictures as her body has atrophied from her weeks in intensive care to the point that she now works every day to rebuild the muscle structure she lost.

And yet, spend an hour with her and you will feel nothing short of meek in her presence. She is the embodiment of the potential of the human spirit. And a life-changing example of what real strength is made of.

And, without a doubt, you’re also going to join her in a good laugh.

“I’m so messed up,” she jokes, while rubbing at her temples. “The drugs are so strong. Last week I couldn’t hold a conversation.”

“She just kept apologizing,” chimed in Alderdice. “It was pretty funny.”

Dunstan’s journey has been a roller coaster of ups and downs through a fog she can’t control.

Her downs began approximately a week before her transplant, when her own lungs started to succumb to her disease. Her lung function fell to drastic levels of just over 10 per cent.

“It was really scary,” she said.

Placed on the rapidly deteriorating organ donation list, her personal blog became a macabre story of fear, confusion, impatience, frustration, and, through it all, strength.

At two in the morning one fateful night, she got the call.

Lungs were only 40 minutes away.

And her coaster climbed up.

The week after the surgery, she doesn’t remember. The drugs were too strong.

Today, she struggles to focus. She works hard to rebuild the body she’s not so sure is hers anymore.

“It feels like someone took my brain and put it into someone else’s body. Like this isn’t mine anymore,” she said, her hands waving over her torso. “But I know I just have to keep working. Build up my strength, and it will be mine again.”

For now, tests are showing that she has stopped growing bacteria in her lungs. Her lung function is at 40 per cent and climbing. Her daily frustrations bring her down, and then the realization of the benchmarks she is passing bring her back up.

She is slowly working toward a full recovery that will lead her to the goal of walking the beach at her cottage.

And without knowing it, she is changing lives everyday.

This reporter went for what should have been a very routine run during the evening after a visit with Dunstan.

A pause at a trail bridge, a deep breath in and a gratitude for the simplest of things never felt before changed all of that.

There is only one person to thank for that.

You can thank her too. All you have to do is spend $40 on a fashion show ticket you won’t regret and spend an evening with a dedicated group of girls trying desperately to make sure nobody else has to go through what their friend has gone through.

For more information on the event, or how to donate visit: www.cfforcf.com.

Follow Hattie’s journey at www.icecreammaplesyrup.blogspot.com.

And find out about organ donation information at: www.giftoflife.on.ca.

Friday, August 20, 2010

two and a half weeks!

to paint ones toes nails while on post transplant meds seems a near daunting task....(due to the sometimes incessant shakes of the hands) but alas at least I CAN paint these toe nails of mine.
I can know while sitting put on my own shoes, and tie them up, paint my toes, do all the other stuff that is required of feet care etc.
I am now beginning to see the improvements myself! which must mean i am getting better quite quickly. a man came up to me in physio this morning (after i did 30 minutes on the bike, thank you very much at an increased tension! woo) and asked me when i had my transplant, his daughter had hers june 20th...she is still on oxygen, and looks in quite a lot of distress, gasping for air, etc. she was 6 weeks in ICU, and he says to me "oh wow july 5th, you are recovering quickly"
I seem to be doing really really good. This girl didn't seem to have the best attitude...sooo i can only attribute a lot of me recovering so well to (well of course that i got the mosst perfect lungs haha and had the most perfect surgeons!) but also to working my butt off....and now it is paying off. I am seeing the difference. I am at home again this weekend, and the things that I can do around the house this weekend compared to last weekend are really encouraging the difference!
Last monday at clinic,, they said my x ray looks good again, my lung function is up to 40%...yessss 40% wooo hooo! have not been that since first year university...inner tube waterpolo shall I make a come back on the team???
The fashion show is on Thursday and I am so excited for it. I am not attending it, as that big of a crowd of people that I love all wanting to hug and talk to me but are full of germs = not good for new lungs, especially for the first three months sooo I get to watch it live, but of course Hattie style I will be dressing up, sporting a fancy drink (non alcoholic...my brain does not need any intoxication!) and cheering from the side lines...(i am disappointed about missing it, but there is always next year when it is bigger and better!) Everyone who is missing the show, who didn't get tickets...those babies were sold out before they even went to print! you can check out the fashion show the next day (friday august 27th, 2010, online by going to www.cfforcf.com)
I am two and a half weeks out of hospital, and going strong!

Friday, August 13, 2010

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!

Sunday, August 8, 2010

cutting myself some slack

i am feeling a bit better today. i know that this will all take time. i just have to keep getting over these hurdles. thank you to everyone for reminding me!
it is just going to take a long time, but IT WILL GET EASIER...heck ive only been out of hospital four days...i cant except anything less then what i have accomplished. just one day at a time...baby baby steps.
tomorrow is my first clinic appointment. i am nervous. i blow my first lung function test, which will probably be pretty low, but not as low as before transplant! it will take a few months even a year i think to inflate these puppies....but ill get there!
i am watching a lot of tv....and we washed my hair in the sink today...could not do that last week! haha so theres an improvement!
my mom and dad are also on operation gain weight, so ive got boost, every sort of thing you can imagine to eat to try to get soem strength back so i can start feeling better. I seriously have THE best parents in the world. they are just doing sooo much.
FInally today my blood sugars are under control so i will start gaining nutrients from that too! soo...i just have to cut myself some slack....im usually such a mover and a shaker, but this time i just have to relax and let things take their course...it will get better!

Saturday, August 7, 2010

frustrated

this is so hard...
im tired and the drugs are really messing me up...
i have to patient i guess...
its just so hard when im so weak still, im naseuous still, and i dont want to eat really anything at all....
they are filling my body with toxic drugs though so for the first few months i should expect not to feel good....but its frustrating feelinglike this, its like nothing ive ever felt before...its really really messy on your head and your body and your mind....i have to keep pushing through i guess...its only been 5 weeks....
did this happen to others....what did they do to get through it...
just get stronger i guess and by christmas i;ll be perfect....
ugh sooo hard.
i don;t like being left alone, yet i cant really go out in public cause im too tired and weak by the time i get there...

Thursday, August 5, 2010

made it!

well so many things have happened since I last posted...


Im out of the hospital. Last night for the first time in 6 or 7 weeks I slept outside of a hospital bed. It was wonderful...although I did miss my roomate Loretta. She is the funniest little duck. This sweet old lady, yet does she have a mouth and a wit on her when the nurses are not looking. She was hillarious. She had a double lung transplant ten years ago and is now 75 years old. She was calling to hook up her phone and she was getting so frustrated with them, and said no i dont want to talk to your wife...i want to talk to the fat woman who works there...the things she quips off...maybe you had to be there...haha she must be 3 feet and 80 pounds, and just hillarious.



Yesterday was also the first time in 6 months that I am tube free.....they pulled my last hand IV....I have not had a picc line, oxygen, any sort of tubing hooked up to me for the last 6 months...i always had something in me...and today...nothing. Its very surreal and ghost like. I sat out on the patio today and took off my sweater but only took off one arm, since I am so used to covering up my picc line with the other sleve and realized...um no I no longer have anything in me, take it allllll off! it will be weird going shopping and not looking for sweaters or things to cover up a picc.



They are still adjusting my tacc levels, anti rejection meds, and my levels were through the roof, so it makes my brain a bit fuzzy, hard to concentrate on things, and general not feeling myself...so please bare with me as they straighten out my drugs, if I seem a bit out of it and not myself. I;m susper weak still, but that will come...i;ve also lost 13 pounds gah! mission gain a lot of weight starts yesterday.

Its surreal lying in bed though and breathing...you lucky dogs doing it all your life! haha

not to wake up in the morning with gobs of mucus, not to hear crackles as you go to sleep...just to lay there and breathe through your nose as if its the most natural thing in the world...which it should be....but it just boggles my mind...like i still am so humbled maybe thats not the right word...in awe...that this is what to breathe normal is like. Sometimes I wake up and I am like am i still breathing...because its just no effort...before it was such an effort, I have to check sometimes, because its too good to be true?

The chest incision still makes it totally hard to breath full same with where they pulled the chest tubes, so I am also on a lot of pain killers...my eyes are also still blurry but i hope that will go away once they figure out the drug levels and such.

So we did it...we made it! Monday is clinic, next week is back to the physio room for three months to build up strength...and yesterday is the beginning of my new life.


heres me a few days ago, while visiting the condo on my day pass!

Sunday, August 1, 2010

lungs lungs lungs

I didnt grow!!!! I cant believe it. still 5 foot three and a bit...maybe i just feel taller cause i am standing up straighter now...hmmm.

I did 20 minutes on the bike today...no oxygen, no heavy pursed lips breathing, 97 precent oxygen level...sooooo weird, for a whole year ive had to use oxygen when exercising...and ive never been 97 percent oxygen for a few years...it blows my mind. I also did 12 stairs today by myself! haha tiny feats, but compared to two days ago when I could not even do barely one on my own! still using the railings like crazy but getting there!

They say one more week hopefully, then home!
I am still having suuuuch heavy feelings where they cut open my chest and pulled the chest tubes, but ive only had the chest tubes out a few days, and I have to remember that they did cut open my whole entire chest and replace my lungs...so im sure its going to hurt for awhile. 4 weeks tomorrow since surgery! The farther away i get from that date the better!

Unfortunatly becuase of this rejection they put me on a huge dose of steriods through iv so i now have absolutley like no immune system so now we have to watch out for infection. heres hoping i dont get that and can just go to the condo and start getting stronger and stronger and the heavy chest feeling will go away. ive only been on food for a 9 days though....so i would have to say i am making pretty good head way!

As for the amazing cfforcf.com committee of girls. they are working hard and after this long weekend are urging you to drop your empties off to the beer store in bolton on tuesday evening, all the money will be donated to to the CF foundation! they are also looking for more volunteers to help count the empties starting at 5pm on tuesday! so please if you have a free hour or so, they would looove some help!

Hope everyone is enjoying the weather, the cottage is within reach for me! hopefully i;ll get my legs stronger...its these darn thighs, and i;ll be able to go up on a weekend inbetween all the appointments. for the first three months you have to go in for exercise as well as blood work there days a week, which is why we have to stay down in the city, blood work you have to be here super early before your 9 am pills...so its just too far to drive from caledon,but i;ve always wanted to live in toronto, therefore gotta inflate these lungs and get these legs tip top shape so i can start enjoying the city, during the low people times so as to not catch anything...

the nurse said today that she could here breath deeper down in my lungs then yesterday so hopefully all the biking is working and inflating these lungs will just keep going!

Saturday, July 31, 2010

grown?

so i was noticing all this time, that I think I;ve grown post surgery. everyone seems shorter. is that possible? has anyone had this happen to them. i am going to get them to measure me today. all the nurses seem shorter, my doctors, even standing next to my mom, people seem shorter...i bet i have grown an inch and a half...lets take bets. i;ll get them to measure me today and we;ll see. its probably all in my head, but still.

also this rejection business kind of deflated my sails yesterday a bit, but ive gotten a lot of emails and so many people have expierenced it the first little bit post transplant. they just figuered out my rejection meds in the last three days the levels so no wonder. but my doctor said during my bronch that my lungs look beautiful, she actually used those words, and that there are no secretions or anything that she would expect to see after only three weeks. so woo! doing good that way, just have to get this rejection under control. the pain from the chest tubes is insurmountable, so i am taking heavy duty meds for that. today it is not so bad, and i feel as if one of the imaginary 2 by 4s sitting on my chest has now lifted...now i only have 9 heavy pieces of wood crushing my chest down...haha hopefully every day those will improve.

i also tried to walk up the stairs yesterday with teh physio...oh boy that did not go so hot. i could not even do it! sooo weak in the thighs, i was able to do 10 minutes on the stationary bike though...just have to build up those thigh muscles...they are pathetic! one day at a time. one day at a time!
Also HUGE about the fashion show www.cfforcf.com. You girls are doing an amazing job, i am shocked all the time. It is sooo soon! How exciting. Thanks for sending me photos of the car wash, it looked like unbelievable fun, cant wait till next year when im up doing it too! You girls are awesome and it has kept me going seeing everything that you all are doing!

Enjoy the long weekend! caribanna? fuuuuunnn! cottaging funnnn! the first time i was walking yesterday i thought, oh the cottage is sooo in reach! i am walking faster with my walker, and strengthening my thighs so i;ll be able to walk up stairs eventually! they say i may even get out of here next week!

Friday, July 30, 2010

a free woman

#1 Thank you to lindsay. a huge, big, giant, enourmous thank you for keepîng everyone updated and doing such a wooonderful job. Linds is a journalist and writes so beautifully!

#2 PETER! you commented on here. tell me everything about the beach. is the ice cream store still kickin? hows the water? is it sandy, rocky?

As for me this week, has been sooo busy. I now have ALL tubes gone. I am a free woman. Chest tubes are outta here! catheter is outta here and central line is outta here, all thats left is a little peripheral hand IV. I graduated from the high walker to a low walker when walking about, and am using the bathroom, going for walks on my own, getting stronger every day!
I also had my first bronchoschopy this week. it went fine. not bad at all. I got some of the results back and I have a bit of rejection...sigh. they say this is really common though, and so for the nxt three days I am put on a really high dose of steriods. They said I probably have rejction because it took awhile to get the levels right with all my anti rejection drugs. Basically rejection means my body is trying to destory these new forgien lungs, so they have to suppress my immune system. I asked them numerous times, is this common, is this common, and yes it is....so hopefully its just because they were playing around wtih all the rejection pill levels, and these steriods will do the trick. Still feeling good though so thats what is important.

Monday, July 26, 2010

My lips are pink....

I looked in the mirror for the first time in three weeks. My lips are pink, my eye lids are light. Im no longer oxygen deprived. I no longer look sick. Its amazing. Today three weeks ago I got the call for new lungs. The nurse came in to my room back at st. mikes at one in the morning, Karen and said to me Hattie they just called they have your lungs for you, they have lungs for you honey...I woke up groggigly and said to her...noooo...no they dont. Yes yes they do. I then began to cry. I immediatly called my mama and papa and then lindsay. I have lungs! They have lungs for me! After 5 and half weeks on the list and almost 1 week on the rapidly deteriorating list, my lungs had come, now pray that it was not a false alarm . I remember this, but it seems so so so far away now. Everyone over here asks me how long I was waiting for and when I tell them 6 weeks, they say not long at all...and when I think about it, six weeks is not long...but when your living it...6 weeks was hell...especially that last week when I could not breathe, and things kept deteriorating. Anyways so that is the story of what I remember from getting my call.
Today three weeks ago I got the call.
Today I am alive.
Today I am listening to barbados playlist from two years ago, bobbing along looking out the window with the sun shining with tears in my eyes.....Im breathing....no oxygen, pink lips, light eye lids...Im alive...sigh.
Thank you donor, whoever you are, thank you, thank you, thank you....I will do you proud.

First Blog from Hattie!

Hey everyone,

Again sorry for the gap in updates. Life has become busy, but thankfully I have someone to help me out now... and that someone is Hattie! Here is an update from the source:

So I'm sitting here typing on my blackberry taking deep breaths with my new lungs!

Before I give an update I just want to say thank you, thank you, thank you to all my army of supporters! You guys have kept me going through this whole thing! Even though I did not reply, I got and read every single email! Thank you times a million you have no idea how much the littlest or biggest note meant.

The first time I checked my phone post tx I have 251 emails! That is one of the only things I do remember the first two weeks, as they were pretty brutal. No one prepares you. Every ones journey is soooo different and my first two weeks I am trying to forget and doing a good a job of it! It was a scary time, but I have these puppies breathing and workin for me now! Again I am pushing myself like crazy and you guys are helping me sooo much again thank you!

As for an update, I'm now on the ward! Woo! Last step before home! It means I'm stable enough not to be monitored all the time. I'm up to three walks a day! Thanks to mom, brother and papa who have learned how to wiggle and figgle all my chest tubes and other what have yous! I'm still really weak, and nauseous a lot of the time, but three walks now woo! And stopping two IV's tomorrow. My chest tubes are still in...the x ray says they can come out but they are still draining lots, meaning still fluid on the lungs, hopefully this week they will stop draining as they are a bit cumbersome.

This is the hardest thing I've ever had to go through....but I'm so thankful things seem to be moving in the right direction! Thanks soo much for all the support it seriously has kept me going! It's weird on this side of the tracks because now it's my legs and my weakness slowing me down instead of my lungs. I still have not taken a big big deep breath because of the chest tubes and it's kind of weird to feel the staples but at least the feeling has come back in my chest.

Here's to my donor, my donor family....who's lungs are working beautifully.....here's to a good week, being on the ward and my mom and dad who come in every single day.....aren't they the best? Thanks to B for letting my mom stay in Toronto! Here's to nice weather, no winter coats or boots! Here's to dreaming about running on the beach at the cottage (I still don't quite believe that that is going to be possible....) also I have my voice back! It is way higher than before....no more CF voice?? Maybe it will change again once the chest tubes come out but for now it sounds sooo different to me! Hope everyone had a good weekend! I'm glad my vision has come back a little so that I can type this out! I'm suppose to be napping before the folks get back for my third walk so hope your Sunday evening is dandy getting home from the cottage! Oh the cottage I want to go to mine so badly.....sigh I hope strength comes back soon! Hello again world!

Thursday, July 22, 2010

Back In Action

Yesterday Hattie was able to eat and drink once she was moved down to the step-down unit--finally out of the ICU. Her chest was feeling a little uncomfortable (it felt heavy), so she required 1 L of oxygen. There is also still fluid on her lungs.

The physiotherapist and nurse from the CF clinic visited Hattie the other day (Tuesday), which perked her right up. Even more so, her younger brother made the six hour drive to come see her yesterday (he hasn't been able to see her since before her transplant).

In her words she is "breathing deep, making these lungs work it, moving it around and trying to drain the extra fluid". She walked about 100 m yesterday, twice, and her strength has already improved (not as wobbly!). No doubt all that working out and staying strong before transplant helped loads.

So far, today her vision is a bit blurry still and she in only allowed 1 L of liquid, but things seem to be holding steady.

- Lindsay

Tuesday, July 20, 2010

Morning Update

Hattie had a good night breathing on her own. Today her 02 (oxygen) is 96 percent on room air and 95 while walking. She has been texting me today and yesterday (good signs!) and she informed me that she will be going on TWO walks today. The first walk was "Soo hard" in her words, but she is determined to work a second one in.

She is still not allowed to eat or drink anything, and is limited to "swishing and spitting" water.

I will add more when I speak to H''s mom later.

- Lindsay

Monday, July 19, 2010

Quick Update

Hey everyone,

I'm just going to do a quick little update here since I know people get worried when they haven't heard anything!

Hattie has been showing small improvements over the weekend. She was able to reads some messages on her blackberry and look at some photo from Saturday CFforCF carwash. Earlier today she was even able to go for a short walk with the physio (still attached to the vent).

Everything is a bigger challenge now because she has lost so much muscle in the week she was bedridden, but her mom says her determined, fighting spirit is back in action.

In more good news, they were removing the vent today at 2 pm--and hopefully she is DONE with that now!

There is still some fluid on the lungs, which they are dealing with, and the CT scan results showed nothing significant (infection wise)--a good sign. Her white blood cell count (WBC) is also coming down.

The next big hurtle will come next week when they try to sort out her anti rejection drugs (which were causing her a lot of trouble in the first place). Right now she on a 'temporary' drug, meaning she can only stay on it for two weeks. The docs have a good week to figure it out though, and it seems that Hattie is slowly coming back.

Cautiously optimistic, but baby steps in the right direction!

This was a hurried update, but I thought I'd let you all know. Keep sending those positive vibes!!

- Lindsay

Friday, July 16, 2010

Day 11: Stand Still

Not too much to report today. H still remains on the vent, with no talks on when they will extubate her again.

She spent most of today sedated, but they are hoping to reduce sedation tomorrow so she can start communicating.

Today the surgeons also ordered a CT scan and the infectious disease team stopped by for a review--they are hoping to get to the bottom of this so she can get back on track.

Yesterday she was hit with a lot of anti-rejection drugs, antibiotics and steroids to try to control whatever is holding her back, which is probably what made her so anxious and paranoid.

The good news (we always end with this) is that her sodium issues have finally been resolved. The pieces of the puzzle are slowly coming together.

Hoping to figure this setback out soon!

- Lindsay

Thursday, July 15, 2010

Day 10: Another Challenging Day

Hey Everyone,

I apologize for the day gap.

Yesterday was 'stable', meaning there was not much improvement, but no decline either. Hattie was happy to have her older brother around for a few days to share stories and bring calm and "logic" (in her mom's words) to the situation. Unfortunately, today he had to return to work.

Today was tough again for Hatts, she remains in ICU and has been getting very little rest because the anti-rejection drugs have her in a constant state of paranoia. There is also some 'moisture' on the lungs, so once again she was intubated and sedated so she can get some rest.

The good news is that her infection is gone and she is only on Tylenol 3's for pain management. It's one step forward and two steps back.

And so continues the steady climb.

- Lindsay

Tuesday, July 13, 2010

Day Eight: Back to Baby Steps

Hattie has had multiple issues following transplant, two of them (rejection and infection) are considered imminent complications. Before transplant you are warned that you will experience rejection or infection and she has been experiencing both.

These two things, combined with the low sodium, landed H back in ICU yesterday. It was quite a stress on her and the family as 15 people crowded around the room and Dr. K (the surgeon who performed her transplant) re-intubated her last night.

The low sodium seems to have started over the weekend (Saturday), which is probably what was causing the blurred vision, hallucinations and anxiety--all things that were initially put down to the anti-rejection drugs and indeed one of the medications is also suspected to have caused some of these symptoms. In addition to the low sodium, she was experiencing fluid on the lungs.

When the medical staff tried to explain the symptoms of low-sodium to Hattie's family, they said it was like "being stuck in a desert for three days".

A lot of eyes were on her yesterday and throughout today, including the eyes of Dr. S and two of the other surgeons Dr. T and Dr. Y, along with a staff member A. Hattie's mom was especially touched when one of the surgeons (Dr. T) went in today, held Hattie's hand and gave her a reassuring pat.

Although she is weak from being bedridden for the past two days and having nothing to eat (they do not want her sodium levels to rise too quickly because it could have serious implications), her vision has already begun to improve (she can now read the digital clock on her bedside table) and was extubated at 1 PM. She's now just resting on 02. Her WBC (which measures the white blood cells in your blood that fight infection) has decreased to 14.3 from about 25 on Sunday night.

Slowly, she is climbing back--it's quite a journey H!

- Lindsay

Monday, July 12, 2010

Day Seven: Back in ICU

It's been one week since Hattie's transplant and with great determination she has taken baby steps forward in the right direction. However, as is the case in life, no road is smooth and no journey follows a perfect plan.

Today H had her first major setback and she is now back in ICU. I don't have the details--her parents were too emotionally exhausted to discuss it this evening and of course I respect that--but I do know that her sodium levels are low (I'm not quite sure what that means post-tx, perhaps some post-txers could chime in?).

The past few days have been a little rough for H, she sent me at text on Saturday night (the first since before she was wheeled into surgery--so I was very excited!) and said the recovery has been rough. She wondered how long it will take to feel normal again--her eyes are blurry and sore and her chest tubes are a bother (well I'm sure calling them a "bother" is a mild way to put it!). In her own words she is taking it "hour-by-hour" rather than day-by-day.

So today was a stumble, which is frustrating for everyone, but with all your positive vibes (from around the world!) she will be back on track in no time. Keep 'em coming!

- Lindsay