CF Adult Comfort Kits

Good evening my friends,

So, seeing as 2019 is a major milestone for me on more than one level, I want to share with you my current project.

This project is called the "CF Adult Comfort Kit"

This isn't to say that children aren't affected by CF, because obviously they are.  but it seems that everywhere we turn the kids get all the support.  CHEO is a great place, I had never had to experience the life lived by so many in those walls.  So all I know is the adult admissions process, and the fact that i have had to be admitted at the last minute.  Trust me, it's a shitty experience.

Adults are outnumbering the kids now, so i think it's time that we get some attention.  Here is my reasoning...

I will be celebrating my 10th Lung Transplant Anniversary on the 16th of February, AND i will be celebrating my 40th birthday on April 30th.  To say that this is a small feat , would be a lie.  Damn, i am working hard at keeping my lungs healthy, my kidney's are struggling, but it's a small price to pay, I have an extra 10 years where I wouldn't have had an extra 2 weeks.

This is just the beginning of many more wonderful years with my family and friends.  those friends who are in my life, are pretty much family now.  They stuck with us from the beginning, no questions asked.  So let's talk about these kits a little more.

Inside these kits we will hopefully have... wait, i never told you the magic number of kits... 50!  My birth year (40) and anniversary (10) years added together. Ok, on to the fun stuff...

Kits contain the following (hopefully)

- twin size quilts

- snacks including trail mix, candy (Swedish berries and fish)

- Ground Soap soap bars - Donation 

- Shampoo/conditioner

- Razors and shaving cream

- Tooth past, toothbrush & dental floss

- USB of a video greeting and music videos & music - Courtesy of Moi!

- Pillow case

- Slippers/socks

- Lotions (hand/body)

- Letter and words of affirmation and love and support.

- Puzzle books and notebooks

I know, this seems a little unrealistic, and I agree... somewhat, but until I know that the adults in Eastern Ontario are taken care of, then maybe one day, all the adults across the country will be loved and appreciated.  We are the ones who went through the drug trials, and such to entertain the thought that there would be a cure, or even a partial cure for us down the road. 

If you would like to send some supplies for my kits, i am open to any donation.  If you have an amazing idea to add to the kits, I am welcome to suggestions.  No suggestion is to little or too big.  I will provide an address to you if you want to participate in this great initiative.  

Special thanks to Krispy Kernels for providing some snacks for the kits, Ground Soap for the soap donation and for the possibility of 10 quilt donations from the Quilters Guild in Cornwall, Ontario.  you have helped to make this gift possible.  I can't do this all on my own.  i am counting on my friends and family to help me raise the necessary donations.  

This initiative starts today and I am hoping to have them ready for distribution on May 1st, 2019.

Love to all who can helps and love to all who want to but can only help by making a letter donation to the Adult who needs a little love.  these kits have to be created with love.  Imagine your loved one is being admitted to the hospital and needs some comforts of home, that maybe your contribution will make them feel loved, and admired.  I wouldn't be here without the sacrifices of those before me. like Dexter, Marc, the Richer's and so many, many more who never made it to their adult lives.

Thank you all, Love to all

Ali

Rememberance

This blog is dedicated to my donor family, 

and the events that will transpire from now 

until February 2015.

This year I have decided to make a  

Thank you Scrapbook/Memory box.

I had this idea last year but didn't implement the tools to get it done.  So I sent out feelers on Facebook, to see who would participate, and to my chagrin, quite a few people have responded.  I am hoping that I have made it easy for everyone to either send me their letters or to come down for the party we will have for my Donor.  Now tell me if this sounds stupid, but what if I were to have a THANK YOU sign, and get everyone's family to hold it take their picture and include it in their letter.  do you think that would break confidentiality for me, or do you think that if I were to do that then they would see a face, and maybe want to meet up with me.  I don't know if this is a wish that most likely won't come true.

I found this picture that really makes sense to me right now.  What do you think? It's as though the Angel I envision my donor to be, is embedded into the heavens.  I have been all about Angels recently, I know my donor is an angel, but I need to find the perfect image of who I think they are.  So I am going to post a couple and if you guys don't mind let me know which you think is best, I want to find the perfect Angel for the cover of the Thank you Box/Scrapbook.  Here's the next one.

I found a feather the other day in my dining room.  I had bought feathers not long ago but never used them, I had returned them and then suddenly out of nowhere this perfect feather, and I mean perfect, just appeared.  I think I might just look for feathers and not angels.  I will find some images that have a meaning to me when I see it.

On a lighter note, I am also in the market for a pin-up angel.  Wonder if they exist? NOPE, they don't.

So if anyone here, knows me and wishes to thank my donor also, you are more than welcome.  there are some rules though.

1) No names, mine or yours

2) No gender notification, can't tell them I'm a girl

3) Can't tell them where I am from

4) Refer to my Donor family or Donor and such or "They"

5) Do not tell them what organs I received

Send me a message and I will send you the address as to where you can send the letters.

Well, I am off for a little while, have stuff to do.  I'll be back tonight with another blog about... well I don't know yet.

Love you all.

Kisses and Hugs

Ali

Pre Christmas Banter

BLAH... BLAH... BLAH...

Well tis the season where I begin the bringing in of emotions.  Lately I have been feeling a little out of sorts.  Crying at a Heart and Stroke commercial, crying when Montreal's beloved Jean Beliveau passed away.  I am not usually emotional this time of year, but I think someone inside me is trying to get out and say a little something to the world so I am going to let them take the reins and tell me what is bothering them.  If you are wondering who I am referring to, this would be my Donor.

Lately I think that my donor is a little depressed, passing on their sadness to me.  Making the mundane things a little more exuberant in my head.  I feel for my donor, they (I will now refer to they as she) she has been having issues with little things.  The Heart and Stroke foundation commercial would strike a cord as this was how she had passed away, was sudden cardiac arrest. Also known as DCD in the medical world.

The passing of Jean Beliveau, who was loved by so many, means to me that she was also loved by many, many who will not be able to see her smile, hear her laugh or be able to hold her again.  I feel sometimes that a good hug to a loved one makes me feel a little bit better.  It brings a smile to my face, almost as though her heart and her soul are being hugged at the same time.  So when you see me, and hug me, make sure to give it an extra squeeze, I think my donor needs it too.

This is always a time of the year I  am most grateful, as I almost didn't have this to hold on to not long ago. So i can justify the little things that go wrong at this time of the year.  When my heart feels a little off it's rocker, I stop and think about the trials that I have gone through.  Transplant isn't a cure, it's a temporary treatment that is supposed to last a little longer than any ordinary medication cant do.

My life is like a glass ball, it's balanced now, it will be balanced as long as i can keep the tenants in the body happy.  It's not a matter of them making me happy, it's me making them happy.  It's frustrating and ludicrous at some times, but it's definitely worth the fight I do to keep them happy. I have so many things to be grateful for, but most of all, like it is always going to be.  It's about the family I have never met, and perhaps never will.

If there was a way I could meet Theresa Caputo and hear all about my Donor my family that is gone and just to know that when it's time, there will be people waiting for me.  Now that this conversation has gone morbid i am going tos top here and say these few things that will always bring me back to the now.

"Life is given, not taken, it is shared.  Someone somewhere will be there to greet you".

After all, I am the angel at the gates of heaven, who will meet you.

Can't be anything wrong with that right.

End of Day!

Good night

Why wait...

This week has been a very special week for our family.  

On my birthday, my 35 th birthday as very good friend of our was given a second chance at life.  she is not a cystic fibrosis patient, but she is a very dear friend.  He name is Kim MacLennan, and she is a trooper.  She had been called and pushed aside three times already and this being her fourth time, came with a special blessing, not only was it "THE" call is was also my birthday, and God listened to me when i said make this one work, she's hurting, she needs to have her life back.

Today she walked in her walker, and it's the most beautiful thing i have ever seen.  i only sigh I had more photos of my transplant than there are floating around out there.  Only thanks to my cousin, and a couple from my father.  i don't know if Kim reads my blog but I am going to tell you a little bit about the amazing woman.

She is a teacher, a mother, wife and daughter.  not to mention someone's best friend.  She has been in pain for so long that this surgery was so needed.  Now she won't be in pain, she won't look like she is 8 months pregnant, because that shitty lives and mass that was living in her body has now been removed, and replaces with a stronger, healthier liver, that has now taken up the proper amount of space in her body.

This is my great friend Kim pre-transplant:

Isn't she gorgeous!  Love that hat!

This is my dear Kim, post transplant, walking like it's no ones business:

Run Run as fast as you can, you can't catch Kim, she's got a new liver man!

Every day I wish I knew who my donor was, what he/she is like, the day doesn't start without a hello dear donor in the morning, and a Good night dear donor at night.  I don't know if Kim's donor family will be more accepting than mine, hopefully they want to see where their loved ones parts are heading.  i wish on a start every night that my donor family will want to know a little bit more about me, but i can't press a hot button issue now can I.

This blog is a reminder of how important organ donation is, where is leads, the difference it makes and most importantly the lives they change. One life two families, now it's two lives 4 families.  Amazing what can happen.

Remember to sign off on your organs when you don't need them any more, it's only going to make your family bigger and bigger in the end.  Look what it has done to my family and Kim's. Do we need any more explanation?  I don't think do!

Be a Donor

Recycleme.org

God bless the current organ donors, 

future organ donors and all those who are recipients of organs, 

like me and my good friend Kim!  

Blessings to you all!

LOVE LOVE LOVE
Me

To what do i owe the pleaseure.

I am forever thinking about my donor family. i am always wondering why I haven't heard from them. It's coming up to Thanksgiving, and i have decided to send them a little letter. Not giving out too much information, but enough to let them know how important they are to me, how I consider them a part of my family, they are now in my DNA, literally. I have been blessed on so many levels. My heart can barely contain the emotion i hold deep inside, where no one can see them.

Do people not see the pain in my eyes, that is not knowing where my lungs come from. The unknown of who has helped me stay alive and live for another 50 to 60 years. I know it's hard to feel the pain of losing someone so close to you. I understand that they want to be alone, that they want their privacy, but i want to know more about the person who helped me live and the courageous family who helped make that hard decision to allow me to live, while their loved one has moved on.

We were a perfect match, does that mean, on some level we were destined to meet at some point? How do i know I haven't met them already, and this is all a formality. How do i know whether or not this set of lungs is form a young girl or boy. How will i ever know what this person did for a living. And why me zest for life has increased by billions.

I thank god everyday that i can breath, that despite having grade 1 rejection, I am very optimistic that this is going to pass. This is minor set back, a little bump in the road of life. i am thinking of my friends Marc, who is struggling with the decision to get a transplant, and also thinking of my dear friend Meg, who as we speak is in the hospital getting a tune up. i hate tune ups, but having people who are looking out for your best interests is important.

I have a nurse i like to call my guardian angle. Even though we didn't get along so famously in the beginning, we are now a part of each other. She knows what i fell, what i think. Almost like a part of me, in some sense of the word.

My life is like a river, ever flowing and always rejuvenated.

Making choices on how to live your life, can change your life. what you decide ultimately, makes your life different. If i chose not to have the surgery i wouldn't be here. But should have chosen to wait it out, I could still be waiting for lungs. But God has other plans for me. His choice allowed me to live my life for a lot longer than i could have ever imagined. I am  forever grateful for this choice he has made for me.

Until i have another epiphany, i will sign off, with good thought and love in my heart. Prayers to all my Cf friends who need them right now. And sending love to all those who ready this. You are all my life line, an someday, when this blog get's published, my list of recipients far outweigh the choices i have had to make in my life.

Sending the love
 Ali

Messiness...

Life is messy, plain and simple.

Think about you, you have to shower, WASH DISHES, DO LAUNDREY, CHANGE DIAPERS, CLEAN UP SPIT, VOMIT OR WHATEVER ELSE.  You have TO CLEAN AFTER YOUR GOD/CAT/ OR OTHER ANIMALS.

I have found the ultimate meaning for the word Dirty,

CHECK THIS OUT...

This is what a jeep is used for.  I saw it today, Saturday, when I was on my way to a photo shoot for an 80th birthday party.  What a blast i had when i saw this.  The dirt was amazing.  Then when the fun is done, you get to wash away the dirt, but never the memory.

What i am getting at, is that you have to go through a lot of dirty laundry, and messes to be absolutely at ease with who you are, and what you are becoming.

Today I made the conscious decision to start coaching gymnastics again.  I have to get my level two, but it can and will be done.  Coaching and leading a bunch of individuals, into victory or success, is something i have a knack for.  i don't puch hard, I try hard.  I use positive motivation to get the job done.

I cannot wait to see how things turn out for me this summer.  Training for the Transplant games, and beginning a new life, one year after transplant.  it's the best thing that could have ever happened to me.  I was in the right place at the right time today.

Now just a reminder to pray for Emily, and Conner....

here's Emily again:

Here is Conner with his Mom Sarah,

Conner and Emily both need our prayers.  and in a BIG way.  Support Cystic Fibrosis research by donating to the Great Strides walk, and help families like the Jones' and Hagger's get through tough times like these.  Conner isn't doing well, and needs to be loved a little, okay, he needs to be loved a lot.

Help make a difference and donate to my great strides walk this year.  For every dollar raised, the Scotia Bank in my hometown will match funds raised, so let's raise a bunch.  Think of Emily and Conner and Me.  Every dollar helps.

You can donate to Ali's Army 2010 by clicking on the Ali's Army 2010 link below.:

Ali's Army 2010

Thanks for your continued support.

Cheers
Alison

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

Organ Donation / Thank You

To Whom It May Concern,
which is everyone reading this and more.

On January 15th, 2009, I had been listed on 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 in first place in Toronto, on February 16th, 2009,  on Canada's Second Annual Family Day.

God has given us a unique temple and fortress, which 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 lessened that on February 15th, 2009, the gift of my new life came quickly. I cannot thank the family of this strong individual, whom I know nothing about, for their strength in believing in this person's wishes to be an organ donor. Every day I breathe, I take an extra one for "him/her" for they will live on forever with me.

I have been following Parliament these days with their request to make Organ Donation mandatory unless otherwise 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 by donating organs; sometimes, even 75 individuals can benefit from one human donation.

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

If you need any more 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 yourself, you will also get another chance at life. You may not experience 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 generously 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