It is an honor that you are here, Thank you!

Friday, March 20, 2009

So much to say...

Well, where to begin.

On the 11th of March I started Physio. And it was fabulous. There is nothing like the feeling of the burn in your muscles. Especially since they haven't been able to burn like this in a long time. I have been going religiously for the last two weeks, and slowly increasing my weight limit. I was working on 6 lbs for biceps, and have just graduated to 7 lbs. As for the legs, well they started at 3 lbs, and now i have graduated to 4 lbs. My arms feel it today, and my legs too. I LOVE THE BURN, it's a sign of hard work, and that I can still have muscles. I cannot wait to get my legs back, I have missed them so much.

My appointments have been going great, mu PFT's (Pulmonary Function Tests) have gone up. Here are the stats on that one.

Last Appointment results:
FVC (L) : 2.6 or 71%
FEV1 (L) : 1.9 or 60%

This Appointment results:
FVC (L) : 2.4 or 66%
FEV1 (L) : 2.0 or 62%

The only downfall about the results, is that with every technician does the test differently, and when you get someone you aren't used to, or who does it slightly different than what you are used to, the results aren't the same. Not to mention, as you gain weight, the numbers change, my last appointment my weight was 47 kilos, and this Monday's appointment I was 52 kilos. Which is a significant change, water retention sucks. That also changes my B.M.I. which is Body Mass Index, changes from 19.2 to 21.2. So when I weigh more, the numbers fluctuate with that. Too complicated, and twisted. From now on, I am going to ask to get the same girl I had the first time. she took better care, explained what test she was doing first, and at least she was fun to be with.

Anyhow, enough about that crap...

So Toronto life isn't as bad as I thought it was going to be. I don't really go anywhere besides the hospital, but I love the unique shops that are downtown. The little clothing stores, the big ones, the craft stores, and did I mention Henry's. Oh Henry's. I wish i could live in that store. Probably on of the only places I could spend the entire day in, well, that and the art galleries, and photography places here. Did I mention Henry's yet. haha

I still don't like big cities, but the stores are awesome. If we could get rid of the cars, and the speed that people travel at around here, I think I could live here. I don't like to move fast, I like to stop, smell the roses, or take a picture of the cute older couple sitting on the park bench together engaged in a deep and meaningful conversation. I like to stop and take a picture of the dog that is chasing the squirrel up the tree, speaking of squirrels, I don't think Toronto has any. I haven't seen any. Raccoons, those I have seen, and they are FAT!

Today is an exceptional day. It's sunny, and it's the FIRST DAY OF SPRING! Yay!

My birthday is in 41 days, yes folks, this is going to be a great day. I turn 30 on April 30th. My Champagne birthday as they call it. Although I don't look a day over 18. Well that's what they tell me when I go to the hospital for visits. Accountants love me!

What do i want for my birthday, well let's see. A new set of Golf Clubs, got the bug and it's running through my veins like a freight train through a snow bank. I will watch Golf on TV, and I just can't get enough. I can't wait to swing that club, what the crap out of an innocent little ball, who obviously chose the wrong profession. Mmm Golf. Woohoo!!!!!

I am planning a little something for the summer, that I can't really talk about until I get all the info down. Once that is in place, you will read all about here. And it's going to be amazing. Sun, Volley, Fun and Food. That's all I am going to say for now.

Well, not much more to report here, so I hope everyone is doing well. I feel great, I look great and what's most inspiring to me wight now, is that I can help make a difference. Did anyone catch my article in the paper? Here's the link if you want to check it out. Front page, I made front page. How cool is that!!!! Thanks Dad for sending me the link, my photo was in the paper, but not online. --> you may have to cut and paste it into your browser bar.

http://standard-freeholder.com/ArticleDisplay.aspx?e=1483102

This is a little clue as to my plan this summer... keep your eyes open for more details in the upcoming months.

Much love to you all, I miss you all, and can't wait to come home to see everyone.

Love, kisses & Long Deep Breaths.
Ali

Monday, March 9, 2009

1st Post Transplant Clinic Appointment...

Monday March 9th, 2009... what is so significant about this day, well let me tell you.

Not only is it my first follow up appointment post transplant, but it is also week 3 with new lungs. Yep, you read that right 3 weeks with these wonderful lungs, and all I can say is "THANK YOU", Bless the the family that did as their daughter wished.

That's all I know of really, that the person I believe donated my lungs was a girl. That is all I know right now, but when I find out more I will keep you all posted as to how wonderful this person is, and will continue to be as long as I am alive and kicking.

So about my appointment. As some of you may or may not know, I also have Cystic Fibrosis Related Diabetes (CFRD), that is also caused from the Cyclosporine and Prednisone that I am on. The tend to increase the levels of sugars in the body. The insulin I take 7units of every morning is called Humilin N, and this type of Insulin peaks at the same time my medications do, thus allowing my sugars to stay at the normal levels for me throughout the day. Only one injection a day, and voila, CFRD taken care of. I have been pretty steady in the 6.4 - 7.9 range which is where we want to be.

At my appointment today I have the final stitches taken out where my chest tubes were, and my incisions look clean, and I am able to put Polysporin on the Chest incision now that it has cleared up from gross scabs. Yuck.

My weight is the same, and I think I might have actually grown a little. According to research studies, most people who get Double lung transplants, tend to lean inwards, and slouch. Well, my Dr., Dr. Chaparrow didn't recognize me because I was standing so straight and tall. Why would I slouch, when I can actually enjoy the breath of air i am taking in? I don't know.

To my surprise, as I was waiting to do my PFT today, I ran into Emilie Joinette's mother. I recognized her instantly. I think I might have seen Emilie while I was leaving my clinic appointment this afternoon. Her mother said she is doing better, and she's getting frustrated with her treake, I don't blame her, it looked really uncomfortable. I hope we can all take a minute and just give her a little shout out to the Grandfather for some loving. We're praying for you Em, we are, I am praying extra hard.

So now that I mentioned PFT, I know my mother is cringing in her seat, dying to find out how things went. I know she's sitting there telling me to shut up, and call her. Well I'll do that, but i am going o put it up here too. So please Momma, be a dear and love me, cause you are always on my mind when I go to my check ups.

What they look for in Pulmonary Function Tests (PFTs), it's about the numbers here, not the %.
But we go with % in our house, so I'll give you a brief of both.


AVERAGE FEV (L) : 3.6 MY FVC (L) : 2.6 or 71%

AVERAGE FEV1 (L): 3.1 MY FEV1 (L) : 1.9 or 60%

FEV1 (Forced Expiratory Volume) in the first second:
The volume of air that can be forced out in one second after taking a deep breath.


FVC (Forced Vital Capacity):
The volume change of the lung between a full inspiration to total lung capacity.


Some background information in case you don't know what they mean. I didn't really know all the answers until I asked, so I saved you all the step of asking me. haha

I don't have any old numbers with me to go by, and I am pretty sure they weren't very good. I'll send an e-mail to St. mike's to get my last PFT results from them, and then in the next post, we'll compare the two. Pre and Post Transplant. That will be fun!!!

Some of my medications have already been lowered. I start my physio/rehab regiment on Wednesday & Friday at 10:30am - 12:00pm, here I will work on the treadmill, stairs and weights to keep my strength. Maybe I'll even consider going to the World Transplant Games at some point. Who knows!

Well, that's my day today. My Dr.'s Chaparrow & Singer are amazed at me, for all I have accomplished in the three weeks that I have been transplanted. Needless to say they are shocked, just a little.

VIP MESSAGE: I saw my surgeon when I was leaving my x-ray today. He looked at me, and said in his uniquely French accent, "You look fantastic. I can't believe how your moving so well. Your not out of breath, or anything. Stay out of the cold. You look great" I gave him a little hug, and thanked him immensely for his excellent surgical skills.

Dr. DePerrot you are amazing, my family are in debt to you for life. You have given me another chance to be me, and I can't thank you enough for your hard work. Kudos to the whole team, who worked on me, from the Nurses, Anesthesiologists, admitting ladies to the cleaning lady (she always made sure I had towels), Thank you for your hospitality TGH, you're awesome.

Much love to all
Ali

Saturday, March 7, 2009

Pictures as Promised

From Ottawa - Toronto

As you all know, I was really looking forward to this
flight, thinking is was going to be in a Helicopter, but was not, I was blessed in taking a Prop plane, used in the 1950's. Kidding, although, if you read the blog pertaining to this very trip, you will understand why.

This is the Propeller of the plane that took me to the Toronto Island Airport, notice the vast white surroundings in the back, this was facing the same way as the sun, not into the sun, the way I was facing when I exited the Ambulance.

When I see Propellers like this, I think of the movie "Memphis Bell".



MY NURSE: Joanne


Welcome to TORONTO!


This is the prize winning picture I mentioned in my blog of the same week. I haven't changed anything in these images, because I don't want people to steal them. This was the one, where I was all contorted, couldn't actually see what i was taking a picture of, and completely lucky in getting this shot. It's safe to say, it's one of my favorites for sure.


The image above was taken as I was being switched from the plane to the Ambulance in the tarmac at Toronto Island Airport. Then we took the Ferry across to the city. Fun, fun!

Welcom to St. Micheals


I probably should have Zoomed in and cropped this one, but it's me, in the Admissions office with my Drivers, strapped into the most uncomfortable gurney imaginable, with my oxygen tank in between my legs. I'll have to crop it, it's hilarious.


TORONTO'S FIRST MAJOR SNOWFALL

These next few are for my Dad, he loves old Churches, this is of St. Micheal's Cathedral,
this is the view I had from my room,
it's a lot better than looking at a brick wall like the other side of the hallway had.

This was taken at like 4:30am when I could not sleep!
Saw the snow falling and fell in love with the look of it all. It was beautiful, couldn't hear the cars, or see the buildings, it made me feel like I was at home.

...isn't it beautiful...

This is the last image I got from St. Mike's, but my cousin got Monkey works for me! lol

Let me show you!

Thank you Trish, Jeff & Josh for this beautiful basket of yumminess! I LOVE IT!

The Original Sock Monkey
From my cousin Dave for Good luck

... I love this little guy, even though he smells like a mechanics garage.
Thanks Dave, he came in handy.


That's all for now!!!

Home in Toronto!

Woohoo!

March 4th, 2009, 2 weeks and 2 days post transplant, I was given my DISCHARGE papers to go to my new temporary home in Toronto.
I walked outside, took a big breath, and never felt so
exhilarated in my life.
The intake felt like it was going on forever.
Something I hadn't been able to do for so long.


The Freedom of Breathing

It feels like a long Hawaiian waterfall, that falls with beauty, tranquility and the sounds of softness and breeze. It's a feeling that no matter how you try to explain it, visualization is the only think I can think of. Tall, mountainous waterfalls with the beauty of mist and the sensation of coolness in your chest that makes everything else seem oblivious.

(These flowers are from the Lumley/Ackerson & Hardy's)
PHOTO: Proulx Photography 2009

To correspond with my male friends and family, it's like drinking the coldest beer on the hottest day, sitting in your pool chair. With an endless supply of Bikini Babes bringing you what you want when you want. Sounds good huh, well, Mountain waterfalls is my way of saying, HEAVEN!

Food tastes that much better, drinking juice, water, milk is so much easier, no gulping really. A smooth and sensual dance down my throat, with the flavors tickling my taste buds, like they have never been able to taste anything like that before. Bobby wasn't kidding, when he said, he found a new love in eating food again.

Bobby and Noreen Richer (Mother and Son) came to visit me in Toronto, and brought me a beautiful flower plant, and card. Bobby was celebrating his 9th anniversary of his Double Lung and Liver, and he is one of my inspirations by far. The only CF'er I knew of at the time, before I met Amanda and Tim, who had gone through transplant.
(PHOTO: Proulx Photography 2009)



When I was asked to make a speech 2 years ago for the CF AGM in Cornwall, all I could think about was being like Bobby. He's strong, and a very important part of my CF Community. I treasure knowing him, and being able to visit with him more frequently now than ever.

I also had a beautiful visit from Rebecca, Nanny and Stephanie. Stephanie brought me a Sudoku book, and the Lumley's Ackerson's and Hardy's & Nanny, gave me a beautiful flower arrangement. Thank you so very much, it was and still is beautiful.

Derek took these pictures at the apartment, because the hospital did it no justice, and we couldn't take the cellophane off, cause we did not know we could not have any flowers. Oops!

This is a picture he took of the Vase, it's cool cause it light up red, obviously. D'uh! So you can see how pretty they are.

Thanks for the pick me up guys, I love them very much.

(PHOTOS: Proulx Photography 2009)


Well, I will post pictures up of my stay in a little bit.
Hope everyone enjoys these so far.
Can't wait to
hear from you all.

Much love.
Alison

Organ Donation / Thank You

To Whom it may concern,
which is everyone reading this and more.


On January 15th, 2009 I had been listed to the Trillium Gift of Life Organ & Tissue Donation list, in a Category 2 state, which is he highest you can get for immediately needing lungs. I started my journey in Ottawa and finished first place in Toronto, on February 16th, 2009 on Canada's Second Annual Family Day.

God has given us a unique temple and fortress, that I like to call the Heart and soul.

It takes a really strong person to put themselves on an Organ Donation list, and an even stronger person to sign the card and register with the Ontario Health Government. You may have discussed with your family the option to be an organ and tissue donor, and that is a good thing, but it's more than just signing your Organ Donation card now. You must register with the Government, otherwise it's useless.


I was lessed that on February 15th, 2009 the gift of my new life came quickley. I cannot thank the famiy of this strong individual, whom I know nothing about, for their strength in believeing in this persons wishes to be an organ donor. Eveyday I breath, I take an extra one for "him/her" for they will live on forever with me.

I have been following Prliament these days with their request to make Organ Donation mandatory unless uotherwise stated for Religious beliefs, or you just don't want to, although I don't see why you wouldn't. Every human can save up to 8 others in donating organs, someitmes even 75 individuals can benefit from one human donation.

If you haven't signed you card, or talked to your family about it, I encourage you to do so. You must be 16 to donate your organs, unless it's a child, and then it's alittle more complicated. I have signed my card, but now I must register it with Health Canada and OHIP.

If you need anymore information regarding Organ & Tissue Donation please visit www.giftoflife.on.ca they have all the information you need.

I have some pretty amazing ideas slowly coming to fruition in the next few months, so keep your eyes peeled, all the people int he world need to know about these things, and I want you all to be a part of one of the best things you can do to keep another life going, even when you can't. If you donate your yourself, you will also get another chance at life. You may not experince it in your life, but in someone who really needs to be here, to carry on your name.

I plan on spreading the word, sending a Thank you to all those who helped me, and the family who so gereously allowed me to live with the lungs of their loved one. There aren't any words that can express my gratitude to them, their siblings and spouses.

I will have a more in depth blog about organ donation later on.

Breathing Easy
Ali

Monday, March 2, 2009

The Week the ICU came and went.

Well for those following, thanks you so much for keeping such a keen interest in my daily activities, I love letting those who know me, and people who kind of know about me, on the most amazing experience in the world.

Since February 16th, 2009 Canada's second "Family Day " holiday, I got my whole family for the best day ever, and one I can guarantee none of us will ever forget. I don't know the time I was wheeled into the ICU or what time I had first opened my eye, or and funny things I had done, I guess being on like 9 different pumps, with god only know what going through them all, you wouldn't remember wither. But I do definitely remember the thumbs up going down that hall.

All I can say about what I have experienced thus far, is that when you have great family, it really doesn't matter who comes to visit you, because in the end, they all want to be there, hold your hand, clean the crust's from my eyes, slurp up the drool with the suction want, and Vaseline my poor lips. There were the ICU nurses, who deservedly need more recognition for what they do, and what they put up with. I am at a total loss of words to all these wonderful ladies. They truly make you feel human, when clearly you look like a zombie from hell.

I had one song in my head on the way to the surgery, and it was still playing along, when I came to, and say the most magnificent sight of my life, my ever loving and supportive rock Derek. I had been singing the words to our wedding dance ever since I got to the hospital, because I know he will be one of the first faces I see. It going to be nose in nose though, between he and my mother.

So at this point, they are explaining to me that there is a ventilator tube down my throat to inflate my lungs properly, and consistently, and not to fight it, it's just going to make you more tired. So i tried and I tried not to fight it, but when I did, the nurses would come running in, take deep breaths Alison, deep breaths, don't fight the force, Join the dark side. lol, kidding.

I has 4 chest tubes, to drain the fluids from my lungs into these containers that measure the amount of drainage from the lungs. They weren't very painful, mind you, put me on drugs, and I am totally different person, Right Jeff? I was getting nutrition feedings through my nose. Yep, the latest crazy, why settle for the mouth, when your nose can do the same. I thought it was funny, they gave my oral medication that way also, crushed it up into little pieces, and mixing them with nutrients and vitamins I need to keep my immune system in tack.

Then there are the IV lines, I counted 4 lines, an ARTerial line in my right wrist, is didn't look nearly as bad as Amanda's did, if Derek didn't delete it, it's on the phone, I also had a sub clavicle line, which had three ports for different medications, that was fund on the right side, just above my clavicle, then there was the one in the Jugular, yeah, you should have seen the freaking Vampires hanging around the ICU that night, they were everywhere. I'll get the proper terminology for all these lines at some point, but I think it's best explained like no one here is really a doctor. Don't you agree. The last line I has was plain regular IV on my left hand wrist that was put in, and never used. Taadaa~~

I have what the Doctors refer to as a clam incision where they actually did the surgery, there the fillet me like a fish. Sorry folk this could get graphic, wait no it can't because I read about it, saw it being done on some science channel on line, and to be quite honest with you, it's not as bad as I thought it would be. This first week I don't feel anything, cause o the drugs. But there are quit a few of them in there.

CONTEST

"Can you guess how many Staples it took to close Ali's Clam Incision?"

I will find out shortly, winner will receive a special Gift from me. Please provide name address, and telephone number for your change to be a part of the fun. Pictures of the Staples and the incision before and after may be posted for all to see, until then, just guess.

Moving on then. It's about day 2, the Physio is taking me for a walk. I am prepared for this, thousands of monitors, tubes, and drugs, muscle movement at it's minimalist. Oh this is going to be fun. I managed to slide my lazy ass to the sitting up position, a little wobbly, and sick feeling, but okay none the less. No come the moment of truth, ladies and gents, can she stand for this, is she capable of making her legs jingle on the edge of the bed. Oooo, it's like watching a baby sitting for the first time. IS she gonna fall over..... No, yeah she made it another step.

Here comes the doozie everyone, the Stand. Will it be Fred Astaire like, or will it be Floppy and dismal like Bambi... Here we have it folks, the truth is about to set us free, she's slowly getting up, slowly, slowly, and she's up. But back down almost as fast as she felt a little light headed. It's okay, it's okay. As the Walker is being prepared for her grand adventure out into public, she regains her bearings, and with help from Physio, she is up and staying up.

"AND THE CROWD GOES WILD!"

We zap the pain meds a little more to get things shaking. I do mean shaking, like Bambi on ice. I was wobbling, and stuttering, and well, you get the just of it. But I am up, I am walking, and I am enjoying the pain I am feeling in my leg muscles, it's like lifting 20 pounds on 2 pound sticks. Drainage tube containers, Urine catcher bag, Oxygen tank, a 6 pumps to get me started on my journey home. Now I know how Neil Armstrong felt when he walked on the moon with all the crap, wait a second, he had no gravity, CHEATER. I walked about 100 feet, maybe more.

Within the next few days, I has 2 of the chest tubes removed, the line in my jugular was also taken out, I am now down to about 4 pumps, The story of the ventilator tube coming out is awful, and something i would rather not talk about again, but will tell you if you ask me nicely and give me $100. While on ventilator all my communication was written on paper to my family, but it wasn't always so easy to do, #1 I couldn't see 2 inches in front of my face, let alone the size of the writing, It's all over the place, and jumbled, so very, very funny. I got frustrated many times. That was the hardest part of the whole thing, was trying to tell people where it hurt, and on a scale from 0 being none to 10 being unbearable, it was heard.

By Friday I was moved to the Step down unit, and now I am on the Transplant floor, with all the other transplanted.

This is a wonderful place. There is so much going on, so much learn. But the best thing about the whole adventure, is that so many wonderful friends and family, have come to see me, and take good care of me. I am honored to know the Team here, and honored to have my family here when I need them, and when I don't need them so much, they understand. It's a great new beginning for me now. I can walk without a walker and Oxygen, my last two chest tubes came out on Wednesday I think, they took out my my last IV from my clavicle, and have engaged my Port. I am on many medications, and it's not so bad. I get routine visits from doctors, x-ray techs. People on the strep down floor were amazed that I was walking after two days of my surgery.

I could never have done it without Derek, My mom and Dad, all my family and friends who took the time to see me. I know I am far, and I plan to make it all up to you, as soon as I can, and as soon as my doc lets me enjoy the freedom of summer. And he will.

Love to you all, next updates I won't have to remember so much, I have just made enough room in my brain, for more amazing tales.

Love, Thanks, Prayers and hugs
Ali & Derek