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

Tuesday, May 26, 2009

This one's for Ashley!

Mark this on my calendar.

Tonight at 10:00pm I received a exciting call from my friend Ashley's mother. It was a call I was not expecting for at least another two weeks or more, and low and behold it came nice and early.

My friend Ashley, that I kind of met at St. Mike's when I was there, got the call for her new lungs tonight. Now I sort of know how my family felt when I got the call, only they probably experienced a little more fear and trepidation than I did with Ashley.

This was something we both talked about for quite some time, and now that her day has finally arrived, i had to tell her to relax and be strong. i am so proud of her right now, I can't stop smiling.

I know how she feels, she's scared, and nervous and confused. i say confused because she told me she was feeling better. Ashley honey, you don't know better until you get those new lungs into you. She won't let me come to see her, but I will try my damnedest to get out there to see her, whether she likes it or not.

Anyhow, I needed to mark this moment with a blog. As I cannot express the excitement, and nervousness I feel all at one time. I hope I'll be able to sleep tonight because I have to go to Ottawa for my check-up tomorrow morning.

I can't wait to get the call when her surgery is done, I cannot wait. For everyone who is reading this,please pray for Ashley tonight, that her surgery goes well in the morning, and that her donor rests peacefully knowing they have helped save another persons life. Pray that Ashley will come out of this safely, and stronger than ever before. Pray that her next deep breath is taken with a lot of strength.

Please God, watch over Ashley in this time of fear and uncertainty, I pray for her family and support system. She's a strong girl, who made a hard decision with very little waiting time. 2 weeks is long enough when you're sick. Be there for her, and pray with her, that's all I ask.

With love & Gratitude to you all
Ali

Tuesday, May 19, 2009

Today & everyday is for life!

What a day,. today I spent the day in Kingston. I have attended my first Ontario East Transplant Support Group meeting with some very amazing people. Pastor Ian Robb is the president and a Double Lung Transplant recipient, and coincidentally he also had the same Doctor I had perform the surgery. Dr. De Perrot is quit the man. Kudos to him and the team again.

I am hoping to start a O.E.T.S.G in Cornwall and area. You never know who is going to need a little help from their friends. I wish I had known about them before my surgery, they could have helped us out a lot with some things. Now I know where to go when I need some help. Not that there is anything wrong with the help I already have, it's fabulous, there's just a certain "je ne sais quios" with this group. There are Kidney's, liver's and hearts all around me that have been graciously donated to the people I now call my friends.

On my way home tonight, I saw a transport truck with a rather interesting bit of information on it. I don'[t know if anyone remember the little girl named Cecilia who went missing a fewmonths back, but her face was pklastered on the back of the transports load. It was a great way of showcasing missing people. I mean, who doesn't look at the back end of a Semi truck and not notice the face of a little girl gone missing? You would have to be blind to not see it.


This letter is for my Dear freind Ashley, who is waiting for her Double lung translant as I sit here and type this out.

Ashley,

You are a courageous young lady, with a beautiful smile, and eyes to boot. You know what to ask, and when to ask it, and for that you will become wiser in your years. We have been brought together for a reason, and that reason was for me to take you under my wing, to guide you and protect you. When you get your new gift, you will notice the most amazing things will happen.

Roses will smell sweeter, food will taste better, and the air you breathe will be that much nicer. It doesn't hurt anymore, it won't hurt anymore. The air will flow through like the the wind flows through your hair on a cool summer night. Not to mention actually being able to go outside in the summer, when before that was impossible. The heat will not bother us as much, noer will the humidity.

Think about the wonderful things we will be able to do. Breathing, walking and enjoying our new life as a free spirited living, brething and walking human being. We can actually say we are somewhat normal now, well you can say that, I don't know about me yet. lol

Ashley, keep strong like I know you are. And never forget who you are, and how important you are to me and your family. don't give up when they tell you to. Be strong, confident and positive. The results you want, will come in time. I promise you that. When that time comes, I will be there with bells on to take you for dinner. I am so very proud of you, and your choice. Had it gone any other way, I would still be proud of you. It's a tough decision to make, and it's even harder when people want you to make the choice they want, not what you want. But you managed to overcome that, and be a better person for it.

you have changed, and will continue to change as you grow.
You are woman, I hear you roar. lol


Love you Sweetie
ali

Friday, May 15, 2009

3 Month Assessment results are in...

Well if it isn't the time to tell everyone about my 3 month assessment. and on a Friday or a long weekend none the less. So do you want to hear the results, or should i talk about something that has nothing to do with anything? Shall I give you the Seinfeld rendition of nothing, and make it seem like everything... No! Well okay then. Let me start by telling you about how Monday's appointments went. for those of you who don't know, the three month assessment takes three days to accomplish, and what a hectic three days it was. It starts at 6:30 in the morning, when I have to get up, to get to TGH (Toronto General Hospital) bright and early for my PFT (Pulmonary Function Test). It's so early, that the technicians, haven't even started the computers yet. They are there, but nothing has started. It starts with the weigh in...


Weight: 55 Kilos I think that's something like 128 pounds,
yep, I'm a heifer and proud of it. lol

LAST PFT RESULTS:
CURRENT PFT RESULTS:
FEV1 (L): 2.5 or 81% FEV1(L): 2.7 or 85%
FVC (L): 3.1 or 86% FVC(L): 3.3 or 91%


Thank you folks, I will sign autographs when I can. haha!
I am so proud of myself.

After my PFT was done, I headed off to the Medical Imaging floor, where they did two things, the first was a lung CT, totally cool. I even have it on CD, I will try to post the images of my lungs if I can get it to work. Then they did my X-rays, which are so beautiful, my lungs have settled in to their new home quit nicely. Even the docs are impressed with how well they have done. Then off to the blood lab to get the weekly pic of the needle to make my life a living pincushion. Yay for me!

All this was done by 10:30am. Now i have 2hours to spare, what the hell was I going to do. Well write of course. Come to the realization that this is my niche, and I should probably consider a future in it. Hmm, we'll talk more about that later.

Over the past few days, I had been experiencing some swelling in my feet and ankles, and this time in my knees. But don't panic, it's still normal. The medication can cause water retention, so i am told not to worry about it... so I won't! That simple. They won't give me water pills, as these dry out the kidney's before it gets ride of the excess fluid in the body. Good to know.

So now it's time for my appointment, and I am eagerly awaiting the results of my blood work. And of course they come back normal. I get to stop the Ferrous Gluconate (IRON pill) as my iron seems to have stabilized, I also get to stop taking the Magnesium Oxide completely, as that has also stabilized. Thank god for yummy, yummy milk. I do however have high cholesterol, which is something i am going to have to adjust to severely.


I am going to have to watch everything I eat. did you know that Quaker Rice cakes the minis have less cholesterol and sodium and calories that the NO NAME brand. Yup learned that yesterday. Sure they are more expensive, but hey, they are fabulous. My blood sugar is 5.6, my cholesterol is 7.9 (I am guessing that's high).

Docs checked out my x-ray and CT of my lungs and are very happy with how everything turned out. Thus concluding my Monday events.

Tuesday, again I had to fast for this day, as I did on Monday. But today I get to eat radioactive eggs and toast. Yep you read that right, radioactive eggs. This is for the Solid Gastric Emptying Test. You don't eat anything from midnight the night before, they give you radioactive eggs on toast, you eat the whole thing, with half a cup of water to wash it down. Then every half hour for the next hour and a half, they take a one minute image of the stomach digesting food. When they perform the surgery, your stomach does not like to be touched in any way so they need this test to make sure it is still doing what it's supposed to do, taking in food, and digesting it. Talk about the longest hour and a half of life. Still waiting on those reports to come in.

Wednesday: BRONCHOSCOPY!!!

I love getting a Bronch done, what I don't like is the prep before it. I guess I like the Bronchoscopy because they take images of the lungs from the inside. This is how they detect whether or not there is any signs of rejection, infection or bacteria growth. Sometimes, it's this test, that finds rejection before anything else. Hence why i like it... no not why at all. the drugs they give you make you feel all loopy and out of sorts, but relaxed and calm all at the same time. Totally worth it, plus, if you get enough, you sleep through the whole thing, which I surely did this time around.

all I remember is closing my eyes, holding the plastic grip in my mouth and then waking up in the recovery room. So cool. And the results of this test came in today on my Easy Call system. And the winner of the 2009 clean bill of health and NO REJECTION champion is... Alison. congratulations, you get a clean bill of health, new lungs and the freedom of not having to come back to Toronto for another 3 months. Woohoo. but I did not hear back about the infection & bacteria, but i am not to worried about that, it's fixable. Plus when those results come back, I will be able to lower my Prednisone levels a little. Excellent, all this extra hair growth is driving me to drink.

So that is this week folks, and I couldn't' have done any of this without your full support and prayers. You are all special and wonderful. Thank you for being on support team, and in my hearts giving my family the support they needs, the laughs and the encouragement that I had needed to be transferred over to them. You are all wonderful people.

Cornwall ROCKS!!

If you are local to the SD&G area, please check next weeks SEAWAY NEWS for an article written by Roxanne Delage. We met today to talk about me experience, and the upcoming GREAT STRIDES walk for Cystic Fibrosis Research.
Hope to see you all there.

Sunday May 31st, 2009 @ Lamoureux Park in Cornwall @ 10am.
Go to www.ccff.ca to find the local walk in your neighbourhood.
Click on the Great Strides shoes to donate also.
My team is called "WILSON-PROULX 02.16.09"

Much love to everyone for their support. Hope it's a good read this week for you!

Feel free to message me about anything, I am only happy to share my story with everyone, who will listen to me.


Have a GREAT long weekend.
Breath Easy

Ali

Friday, May 8, 2009

12 weeks on Monday!

Well, what a ride i have been on. As some of you may or may not know, I was able to come back to Cornwall to spend the last three weeks of my sentence. .. just kidding. It wasn't a sentence, but i was allowed to come home early. I admit I was a little nervous, but i got through it with the love, and support of my wonderful husband. who, by the way is one of the best dancers I have ever seen, one day I'll have to video tape his Stag dance, because it makes me laugh so hard, that if i wasn't strong enough, I would probably piss my pants. lol

I have become aware of this new video that is coming out on "The Lens" a Canadian series that features up and coming movies or documentaries. It's amazing. there is this young lady of 23, her name is Eva and she shares her Cystic Fibrosis story with the whole world. Now that's brave, I would have done it oo, if I was given the opportunity, I want the whole world to know my story. I want to help other CF patients who don't know if being on the transplant list, is where they want to be.

You hear so many bad stories about other transplantees, but all the sotries i have heard are good ones. I had done the tresearch, and evaluated my options, and I made the best choice of my life. Without making this choice, I wouldn't be here today to tell you about my experience. had I not gotten the surgery, I wouldn't be making people laugh, like I can now.

Life is too short to no take chances. I hink the best choice anyone can do, when they are faced with a challenging dillema, is to make a pro & Con list of their choice. i had done that a few times. One for the trnsplant itself, another because I was thinking of changing locations to Montreal instead of Toronto, I put the kabash on that one rather wuickly, and the lastone, was wether or not I mail the letters I wrote to everyone, before I had my transplant. Still debating on that one. They are very happy letters, with a few sad notations of friendship and love. Not something you want to mail to people when you are very healthy and loving the life you are leading. But maybe there's a reason for it in the first place.

It's like wondering who the donor is, do I want to know? Absolutely! Do they want to know about me? Who knows. The circumstances may npt be relevant to them, but to me, I want to know everything. what he/she did before they passed, what types of activities did they do, or how old the were. And sometimes people think that's morbid, but listen folks, this is someone who died so I can live, I want to make their legacy last, and keep their lungs in tip top shape like they had already done.

This is the facebook group for this new documentary called 65 red roses;

http://www.facebook.com/topic.php?topic=6839&post=27997&uid=60310687919#/group.php?gid=60310687919

This is the official site fo the movie:

http://www.65redroses.com

Anyhow, these are my thoughts for today, I hope all is well in your world, cause mine is fabulous. Much love to you all!

XOXOX
Ali