Branding

Well, well, well...

Copyright "Off the Cough"

There you are! Yes, here you are.

Reading my thoughts.

Today is branding day

Got the logo, I like it.

Got the name, and I like it too.

The ideas are coming, the tunes are coming. --> yes, there will be some tunes... eek

Clearly not me singing, I don't think anyone wants to hear that. bahaha

It is all coming together.

Cystic Fibrosis isn't just something I was born with; it is something I am known for, something I have lived with. Kind of like the unknown twin sister, who is living in constant annoyance. We have a love-hate relationship. Basically, if she hates me, I make her love me.

It's an honour to be able to share my experience. Being one of the rare CF adults who is closer to 50 than 40. It's not scary, it's amazing. Going from telling my family, "Don't expect her to go to kindergarten." Who's laughing now?!? Me, I'm laughing now.

There are stories here, and you can read them. I am always around for the new people to come out and play.

Short and sweet post today, because I am having a hard time recalling what I was doing. Ahh, old age, I love it!!! 

LOVE LOVE LOVE

~A

How to survive COVID - Part 1

OH. MY. GOD. (insert Janice's voice here, if you don't know Janice, watch friends)

Readers of my blog, I have been M.I.A. for a little too long.  

But you know Thanksgiving, Christmas and all that jazz since my last post. Eeeek!

So not much to report about the holiday's. We are all well, spend some good quality family time together.  It was great, the food was spectacular, the company even better.  Now let me tell you about the NEW YEAR!

Guess what 2022, you suck!

On January 6th, I started to get these stomach pains, persistent stomach pains, that well pretty much led to not really eating anything.  This was going on for some time and I thought that maybe, seeing as the symptoms changed as the pain progressed that I would take a COVID rapid test.  My symptoms started with a headache, typical for me that time of year, stomach pains. Then I started to feel tired, cold sweats and couldn't stand up for longer than 2 minutes without feeling like I was going to pass out.  

I TOOK THE TEST JANUARY 23 ...    POSITIVE!!!!

What the hell!  So as a good adult with Cystic Fibrosis, a double lung transplant, Kidney disease and Diabetes. I called/e-mailed the professionals. I didn't get an answer from Toronto (transplant team) but I did get one from Ottawa (CF team). My nurse coordinator said, "If you can get up here, the respirologist is on call and will take you immediately.  Just tell the ER that you are expected to come in and need to be seen immediately."

Great, I am going to go to Ottawa, see my actual CF doctor and be seen right away.  This is perfect.  I head up to Ottawa on January 25th, because I thought I could manage this without going up.  It's almost as though my brain shut down, and said "Listen lady, if you don't get medical confirmation about what the fuck is going on, I am going to screw with your head!"  This time I listened to my brain!

Entering a hospital is never an ideal situation. Especially with a pandemic in effect. My hubby drove me out, because I was too weak.  I had lost about 15 pounds because I couldn't eat anything, was up every night peeing like every 15 minutes.  Peeing while not eating or drinking is not ideal.  That in itself deserves it's own post, and you know what, my whole experience will get it's own day in the sun. 

Little did we know, even in EMERG you cannot have visitors.  But because I physically needed Derek there, they allowed him to stay.  We register with ER, and then we wait.  We were sitting in priority seating, but there were 12 other people there prior to my arrival. I started to feel weird.  My hands were sweating, I couldn't see straight, the world around me started to get blurry and I thought this is it, they are going to admit me, I am going to pass out, I can't breath properly.  

WHAT IS HAPPENING!!!

Derek went to the nurse to let her know that my status had changed and said that they were going to take me right away.  I got some oxygen, as my saturation levels were closer to 90% than they normally are. I lied down on the gurney to get my bearings.  They then asked us to go another room in the actual ER, but guess what, they didn't take us there, they made us try to find where we were going.  The gave us directions... I'm sorry, but who the hell is paying attention to turn right then go left then look for this area and go to this bed.  I am pretty sure that they should have taken me there. 

I don't know your hospital, I don't know what I am looking for, I have never been the ER this way before, I know how to get the CF clinic, Module R, x-ray and the blood lab. How the hell am I supposed to find this room that is pretty much with directions saying take two lefts and right. Amateurs!!!

My Ottawa experience will be it's own story, you are not going to want to miss it! Stay tuned :)

So we ended up in the wrong room to start, the orderly, who probably should have brought us to the proper room in the first place, comes in starts to lecture us on being in the wrong room.  Well dude, maybe you should have brought us to the right room asshole!

THE ER EXPERIENCE

Some people have empathy for others, some, it's just no in their DNA.  Clearly, it's not in the DNA of the ER nurses or doctors in Ottawa, or orderlies for that matter. Sorry, they call them porters now.  Apologies to all the amazing porters out there, you know who you are! wink wink

As a Cystic Fibrosis patient, who lives everyday with the lungs of someone else, you would assume they would be taking these situations into account, and thinking, let's get this girl out of the hallway and into a clean secure place to find out what's going on. This did not happen.  As confused as Derek and I both were, when we finally reached the proper area for treatment, I was immediately given an IV in the crook of my right arm, where the only good vein I own is.  They took blood, asked me some questions and then they did the COVID test on me.

I was advised that my Magnesium levels were low, and that they were going to give me some IV magnesium to bump it up. Ok cool, sure, what are the side effects so I can be sure there aren't any other things going on.  "Well, there aren't any that should affect you" I was told. Ok!

Then they gave me IV hydration because I was dehydrated. No one ever came in to give us an update as to what was going on.  It would be 24hrs before they got the COVID results back. So it was a waiting game. Be advised we got to Ottawa around 11:00 am. By the time they told us anything, it was that Derek had to leave, and that I was going to  be admitted and alone for the remainder of my stay.

I cried, I cried like a baby. I didn't want to be there, I wanted to go home. There are no visiting hours so I would be screwed. No visiting hours because of COVID. Add to that, I was in isolation because my rapid test was positive.

10 HOURS, 10 HOURS I was in the ER. No food, no water, NOTHING!  If you recall, I had not eaten anything since the beginning of January, this is the 25th of January. No one offered, pudding, Jello, sandwich, apple juice, NOTHING! 10 HOURS! I'm excited to get my survey in the mail about the service I received.  This is going to be peachy!

There was still no update around 8pm, I was still in the ER, Derek had gone home. I mean what was he gonna do. Sit there and watch me cry. That's not what I wanted. When he went home, we didn't have anymore information than what we came in with. At one point in this experience I had to use the commode, which is a fancy word for the portable toilet. I hadn't had a decent pee in about a month, what with waking up every 15 minutes to piddle, didn't think there was anything there.

My back was sore, so then I thought maybe it's something more, maybe I am in renal failure, renal which is another fancy word for kidney failure. I have the best specialist for my kidney's in Ottawa, did they maybe think to call him, and see if anything had to do with the other.... probably not! Not to mention my own CF doctor is the on-call doctor that night. So this should be interesting. I love this doctor, surely he's going to move heaven and earth for one of his own?

Stay tuned for Part 2

~A

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

Let the countdown begin...

Let the countdown begin...

What countdown you ask!
Well there are 2 amazing countdowns to be aware of.

Are you ready for this...

COUNTDOWN #1 - February 16, 2019

This is a monumental date, because on this day, someone I have never met gave me one of life's most precious gifts, most selfless act possible, and went into the history book for being the first Double Lung Transplant on the very first Family Day in Ontario.

If you haven't guessed, although I am sure you have, February 16, 2019 marks the 10 year anniversary of my Double Lung Transplant, that was necessary due to end stage Cystic Fibrosis.  I have my donor family to thank as well as my amazing doctors and nurses.  My surgeon Dr. Du Perron in Toronto, my fantastic Cystic Fibrosis doctor, Dr. Shawn Aaron. I also have to send a shout out to Dr. Ficara, because he was the one that suggested I get assessed for transplant.  Now if i can find him, thank him properly, he has no idea as to the outcome of his persistence.  Hmmm, how to find him!  lol

I will never forget that day, not only did i travel to Ottawa with my bestie Rebecca her man at the time Chris, who is now her hubby. Rebecca was with me in the clinic, when some comments were made by the new Nurse, Ena.  I told them that I wouldn't be admitted to hospital, over my dead body, Ena's comment was... "Well isn't that ironic". 

Rebecca and I looked at each other in astonishment.  I think that was my lowest point, and to have her there made it somewhat more tolerable. We then met up with Rebecca's brother Matt, who is like my little brother, at St. Hubert's on St. Laurent.  We drove up in a red Honda Prelude, me coughing and spitting my germs into an empty PEPSI can.  My beverage of choice. lol

*Please note that Ena, is the best nurse.  She has learned a lot about CF patients, how our minds work, and what we go through in one day, far surpasses anything that any one person would encounter in their lifetime. 

We kick some serious ass.

COUNTDOWN #2 - April 30, 2019

This day, this very amazing and wonderful day, will be celebrated with friends and family, it will coincide with the 10th Anniversary of my Double Lung Transplant, because on this magical day, I turn... wait for it... 

40

Aaaaahhhhhh, I cannot believe that I will be 40 years old.  A birthday I never thought I would see.  After being told by doctors to not expect to make it to 20, let alone 40. This is so awesome.  Every morning the beauty of a deep breath awakens my soul, the bright sun shining into my face reminding me, if the sun can come up every morning, I can sure as hell wake up too.

Everyday... grateful, is not just a word in my vocabulary, it's my meaning, my life, my salvation.

I welcome you all to embrace the days you have with love, gratitude and most importantly a sense of fulfillment, you woke up today, you took a breath today, you put you pants on one leg at a time.  But the most important of these things, is that your family, your friends and your loves will be able to hold you, love you and thank you for being here.  I now I thank you for reading my blog, for advising me on the simple things.  Knowing that I can hopefully help you, and help your loved ones gain insight in CF, transplant and living life in the moment.

We all have a role to play in the successes of others, we also ave a role to play in our failures.  Don't remember them as failures, they are lessons yet to be learned.  Wake up, energized and ready to learn something new about yourself, your friends, your family.  Believe in today!

With loads of love, I thank you!

Kisses

~A

We're here for a good time

Well, look what the cat dragged in!

Me!!

I don't have an excuse as to why I haven't been posting.  Wait, yes there is, it's called LAZINESS and I suffer from this debilitating condition.  I ponder things, write them down in my journal, which I also don't commit to on a regular basis, and then it's done, the thoughts are out of my head.

As of recently, I have found a particularly interesting You Tube channel that has shown me a soul so wise, so in tune and so... ME! I had actually found her by accident, and I think it's been one of the best accidents of my life. I have recently found the soul of a beautiful and talented young woman by the name of Claire Wineland, she is young, beautiful, funny and speaks the words of an old soul. You see Claire has CF, she sees this in some of the same ways I see CF, never as a curse, but a gift that only we can handle, with a smile on out face.

(C) Claire Wineland - Facebook

Here is Claire!

I chose this photo for a couple of reasons, just like her hair, living with Cystic Fibrosis is like a windy day, it throws your hair around like it just don't care.

Is she not a beautiful human being?

Her soul, is as bright as her smile. I hope she's ok with me using her photo, because I love this one.

Claire is about to experience one of the most amazing scientific experiences, she will be assessed for transplant, and I couldn't be happier for her. I have opened myself and my experience to her, I understand that my experience was unique, and very rare to occur, but the process to getting there is the same for all who venture down that path.

Some food for thought, well some stats from Cystic Fibrosis Canada!!

 

 

Jessica "Jess" Forsyth June 14th 1989 ~ July 19 2014

Jessica Lynne
"Jess"
Forsyth
June 14th 1989 ~ July 19th 2014

FORSYTH, Jessica Lynne

Peacefully on Saturday, July 19, 2014 at the Ottawa General Hospital at the age of 25 of Cystic Fibrosis. She was born June 14, 1989 in Ottawa to John Forsyth and Brenda Deslauriers. Jessica graduated from Philemon Wright High School (Gatineau) and remained in the Ottawa area. Jessica loved being active and social. When not with her family, she could be found with friends in the market, mudding in the valley, working with the CHEO telethon or raising awareness with Sixty Five Roses. Jessica is survived by her parents John and Brenda, stepmother Pat Lydiard her sister Ashley (Greg) Mouland, nephew William Mouland, grandmother Helen Forsyth, lifelong friend Beverley Part as well as many aunts, uncles, cousins and countless friends. Jessica had requested that those in attendance be comfortable – casual attire is encouraged. Friends and family are invited to visit at the Central Chapel of Hulse, Playfair & McGarry, 315 McLeod Street (at O'Connor) on Thursday, July 24 from 2-4 p.m. and 7-9 p.m. A Celebration of Life Service will be held in the Chapel on Friday at 4 p.m. followed by a Reception at Stanley's Old Maple Farm in Metcalfe. Memorial donations can be made to Cystic Fibrosis Foundation or the Make a Wish Foundation.

As you can see, I have lost another angel this past weekend.

This was the first time i met Jess;

February 6th 2007 ~ Ottawa Senators Sixty Five Roses Gala

Emilie Joinette & Jessica "Jess" Forsyth
Sixty Five Roses Gala 2007

Jess was one to roll with the punches, laugh at anyone who makes an ass of themselves, and is the first to tell you to shut up and let her finish what she was saying.

About a month ago, Jess was in the hospital having been admitted for the usual Exacerbation CF sufferers often become admitted for. We talked for a good 2 hours about anything and everything, she told me about her boyfriends, and her family and the love of her life, her nephew.

Sounds a lot like me, when it was my turn to be in the hospital for months on end.  Difference between Jess and myself.. I wanted a transplant.  Jess felt that a transplant means someone has to die, she has to WAIT for someone to die so she can live.

For 25 years old, and having been admitted more than I have in my lifetime, she was ready to throw in the towel.  She was sick and tired of being sick and tired.  I used that same line on Derek when I had my Port put in,  I was on morphine and couldn't sleep. I was like Jess said, sick and tired of being sick and tired.

Jess fought, and fought.  I won't say she didn't because I saw her do it.  She was weighing in at less than 90 pounds when i saw her, was tough on herself for not gaining weight.  She was wise beyond her years.  She was a good ol' Mudding girl, loves bikes, 4 wheelers, mud, trucks.  Jess had these amazing blue eyes that would speak to you all on their own.  You just had to look at her, and it's like anything that you worried about, was released form your mind by just seeing her smile, looking into her eyes, and listening to her laugh.

Jess, I may not have been your best friend, or even a really close one.  But I was grateful that you allowed me the honour of getting to know you, and being a sound board when you needed one. I am sorry I wasn't there to say good bye to you in person, I can only hope that you know how important all mu Cysters and Fibros are.  I hold you all close to my heart.

Those that have passed, and those who in the fight right now, can rest assured knowing that i will continue where you left off.  I will celebrate you and your life.  I will advocate since you can no longer do so.

I pledge to all those I have lost too soon, Eva, Emily, Emilie, Tim, Jess, Marc, Dexter, Meg and so many others.  I will make sure that everyone knows your story, hears about who you are, and what your life meant to me.  I will take my storey and make sure that wherever anyone treads, that we are the first people they think of. 

I hope that I can live up to your expectations and bring results like you have.

To those who have loved ones who are struggling with any kind of illness, let them know you aren't forgetting about them, that they are still in your thoughts all the time, no matter where we are.  So much has happened in our young lives that no one will ever understand.

Transplants are not a cure, they are a life line to give you that extra time.  Depending on how well you treat your body you can go on forever.  I hope to, I really do.  I want to be around when they mention to all the world that the cure for Cystic Fibrosis has been found.  I only wish it would happen sooner rather than later.

For all of you loving and caring for someone who is ill, I want to thank you for all you do.  Doctors, Nurses, Personal Support workers, and the admin staff of all the hospitals I have been in. Thank you, thank you, thank you!

With love and a wounded heart

~Ali

Cleaning House

So today I decided that I was going to clean out my facebook account.  you know get rid of people you don't talk to, who don't comment on anything, or those who I just don't want associated to me in any way.  This is how I cleans myself.  Get rid of the negativity and useless meaning in my life.

Time to rejuvenate my life.  New hair, New job new Friends and a new attitude about myself.  I have been reconnecting wit my childhood self, remembering all the wonderful things I did as a child, and thought that would make me feel better.  And boy was I right.  I have made some drastic choices in my short life, that I thought I needed to make some more.

I have lost a friend again this day.  I want to send out my love to the Martinez family, and to Cinthia's close friend Kate "Ducky", please know that i am here and love you very much.  CF sucks, and it always will.  But good can come out of this mess of a situation.  a CURE at some point.

I have started a new job in the beginning of December, and tomorrow I have officially been put on the floor for actual work and not training.  Am I ready, I don't know yet, ask me tomorrow.

Well this is the minor update to you all, and I want to thank you for sharing in my sadness and frustration and cleanliness,  I couldn't do it without you.  Haha

Love to the Msrtinez family, and all the world.

Ali

BACK IT UP!!!!

Well hi diddly Ho, Neigborino's.

I am in the process of cleaning out my computer. Examining the photos that I have yet to remove from the system, and you wouldn't believe some of the old stuff i have found. I a talking old school. here let my show you, old school of me as a wee bitty baby, and how cute was I. Buddah belly and all.

This is my favorite picture of all times. I am in my blue (favorite colour) footsie pajamas, eating (my favorite hobby) and sitting in our awesome Cow couch, what more could you ask for. I feel so nostalgic. Those were the days. If you think this is cute, wait until I show you some others. 

 Old time photos bring back such fond memories of being a child, having no worries, and being able to eat what you want when you want. Now, it's all because of anti rejections that you have to learn a whole new way of eating. Here's another picture of me as a child, here you can really see my little Buddah Belly, oh how I loved it them it was cute... now... not so much. There I am in my pink overalls, carrying what I think is some kind of stuffed... alien maybe??? Who knows. 

 As i was slowly growing, very slowly, i realized that i am pretty damn cute. i have a wonderful family, with whom I respect dearly. My mother and father, have put up with a lot as a grew up. Lot's physio, medications. There was a time, when we had to pay for all our meds, and that was not cheap. Luckily for kids in Canada, as far as I know, we do not have to pay for medications that will save our lives. We owe that to Mila Mulroney, the wife of Prime Minister Brian Mulroney and mother of Ben Mulroney. 

O Canada, true north strong and FREE. Time goes by, so slowly, when you listen to Madonna. Change it up listen to Dave Matthews,. I know totally off topic... ANYHOW!!! According to the pole i had up on my blog last week, 66% of you think I should get my port replaced... well I think i am just going to get it removed, so when I do get sick, which won't be for a long time, I can just get a picc line. Ask Ronnie, they aren't so bad... RIGHT!!!???? 

Please hold, while I transfer some more documents on to a disc... 

Your patience is appreciated... 

15 minutes later... 

Okay, I am back. How eventful. So now i am going to just mention that i am now a member of TEAM BOOMER. for those of you who don't know, Boomer Esiason is a former NFL Quarterback, who's some was born with CF, he has since started a foundation to help raise funds to support families and research. Check it out at www.esiason.org. 

 Today in the mail, I got my TEAM BOOMER t-shirts and I am so excited to wear them to the gym. CF all the way baby, CF ALL THE WAY!!!!!! Well, I just noticed that it's pretty damn late, and I have to work in the morning, i will keep you all posted about my Port when I find out more. Cheers and pleasant dreams to you all. 

With love Ali

Late Updates...

Well ladies and gents, I am here today to tell you a little bit about my life during this past few months.

In May, When my port was being flushed we were having some issues with her. First of all, she loves to take in fluids, but refuses to let them be sucked up. Short and sweet of it all, she won't give me blood. That is a crucial step when flushing a Port a Cath. What needs to happen is, all the heparin that is flushed into the Port needs to be taken out, in order to lean the catheter properly. When we are unable to get blood back, it means there is probably a clot, or in my case Fibrin issue. Short definition of Port a cath and Fibrin Tissue:

PORT A CATH

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septumthrough which drugs can be injected and blood samples can be drawn manytimes, usually with less discomfort for the patient than a more typical"needle stick".The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free


Ok so I cannot find a definition for fibrin tissue, so I will do my best to describe it. It's like a stocking growing along the end of the catheter and when you try to draw blood back from the port, it get's sucked up like a balloon does when you suck all the air out of it. Pretty much the same idea.

Surgery

Looks like i will be getting more surgery to get it removed from my body. It's going to be a weird feeling seeing as it has been a a part of who I am for so long, that to replace it or remove it would be like removing a twin. I know it's weird, but it's true.

Here is a picture of me with my port from my wedding picture were you can see it.

That round thing sticking out of my chest, that's my Port.

I am not sure when this will be, but it will be in the near future, that's a certainty.

I go for a Cath flow treatment on the 17th of august, so I'll keep you posted on that procedure.

Take care and stay healthy.

Love
Ali

My Life With Emily! Rest Peacefully Dear Friend

My good friend Cara, sent this in her blog, I watched it and it was amazing.  So you can understand a little more about Emily, and how strong she is.  I am saddened to inform everyone, that Emily has passed away.

Here is the link that Cara posted on her blog that i had no idea was there.  Probably because i don't check out the New York times all that often.  haha!

Emily Haager and The New York Times

I am really pissed off right now.  People who are advocates of what they have, are the ones that are being taken away form us.  It kind of makes it hard to believe in ahigher power, when he did so much for me.  But then you think, is it something that I did, is it something I am supposed to do.  Why did they take Emily away form us?  Since December I have lost three dear friends to CF.  Emilie from Ottawa, Eva from BC and now Emily form California.  All of these strong women were a huge part in advocatcy for transplant and CF.  they were my Cysters.  And not that I am not grateful for what I have recieved becasue i truly am, but why do these women have to leave their legacy behind and not be able to share their stories anymore?

MY Great Strides walk this year in in honor of my Cysters who have passed away to quickly.  My living is in their honor, to show that with modern medicine, and no procrastination, all CF patients should undergo their assessments as soon as they hit their 20's, and have had their first infection in the 20's or early 30's.

In order to make CF stand for Cure Found we have to work hard to make the best of everything we have, and everything we'll get out of life.  I am grateful that this illness isn't taking me away, tuly grateful.  But it is taking away people that are important to me.

I will single handedly make a difference, if I have not already.

Life is precious, hold it close and never let it go.

This is my favorite picture of Emily, and this is how I will always remember her. Rest in Peace Dear Friend, you will never be forgotten.

Cornwall is going to the Olympics

Published on November 5th, 2009

Published on Febuary 7th, 2010

 

I’m sure when the Winter Olympics hit our airwaves in Canada, there will be hundreds of stories “behind the story.” I’m going to share one with you ahead of time.

Alison Proulx is 30 years of age, and lives in Cornwall with her husband. She works at Advantages Advertising for her mom and dad, Linda and Kevin Wilson. So far to be truthful, the story is pretty general and not much to it.

Alison Proulx is 30 years of age. The medical profession, not too long ago, wasn’t sure she’d make it to 31. Alison has spent a lot of time in hospital recently, in Toronto. You see, she needed a double lung transplant. “I was born with cystic fibrosis and my lung capacity was down to ten percent which means I needed a lot of oxygen just to breathe. It was the worst six months of my life. Now it didn’t feel that bad to me but apparently it was pretty bad. The doctors didn’t think I was going to come home,” said Alison.

Alison is home and she’s feeling pretty good thank you very much. The double lung transplant happened on Feb. 16, 2009. “It actually happened on Family Day. There’s a lot of karma going on for me right now. I was in the hospital for seventeen days and then I had to stay in Toronto for the first three months in case something happened,” she says.

This is all very interesting but is not the real story behind the story. Double lung transplant patient Alison is going to the Winter Olympics. “I’ll actually be there for the one year anniversary for my double lung transplant,” said Alison, “I’ll be the hostess for the events area working in the athlete’s village. I’ll be greeting athletes as they come in letting them know where the various venues are.”

She says it’s the best gift ever to be able to spend some time at the Olympics with the athletes, the other workers and volunteers. She’s come a long way since being told she might not make it home again while she was in Toronto. “I applied on line (for the Olympic job) and I waited patiently—(she pauses)—okay, so it wasn’t patiently, I was very impatient. I think I called them every two months to find out if I was in. Finally I got the call and actually I was in Toronto when I got the call for the interview. They asked me why I wanted to work at the Olympics and I said ‘I just had a double lung transplant and I’d like to spend my one-year anniversary with the lungs at the Olympics.’”

The lady on the other end of the line said, “I guess you’re in.” “Then I found out for sure, I think it was June when I got the position.”

Ali’s been counting the days when she will realize a dream at the Winter Olympics. She leaves at the end of the January and comes back in March. Expenses are taken care of, except for flight out there. She’s staying with her aunt and uncle while in Vancouver.

Ali says, “I was hoping to get in to see some hockey and some snowboarding. The hockey is five minutes from where I’ll be working but the snowboarding is in Whistler, B.C. Maybe on my day off I can get a deal on tickets still available at last minute.”

Ali says one of her favourite sports was figure skating until the controversy hit about judging in a recent competition. Since then, she says, she’s turned her back on the sport. “With snowboarding you get your creativity and you get everything you’re missing from figure skating because they’re (the snowboarders) doing amazing stunts and of course everybody wants to watch the hockey.”

Ali says she’s never tried either sport. “I like to watch. I’m very passionate about being an observer!”

We know Ali is going to create memories of a lifetime, a lifetime that was going to be cut short, but Ali is a positive person and she was “positive” she was going to pull through. She has.

Now, there’s more to this.

While she was in Toronto, Ali thinks back to the time when all the visitors that came to see her that she felt like she was a celebrity. “The chief of police (Dan Parkinson) came to see me and made me a special constable so I have a badge and everything and I feel super-special,” she said.

When asked how she was feeling now, Ali says she feels “fantastic.” “I actually just got over a cold and I was impressed that I could actually get over it.”

As it turns out, the cold may not have been Ali’s at all. It seems the donor of the lungs tested positive for a virus called CMV and it’s believed that’s where the cold stemmed from in the first place.

But because of how Cornwall was there in Alison’s time of need, we now have the best ambassador of the city anyone could ask.

The message she will take from Cornwall to the Winter Olympics: She says she’s going to wear her Cornwall jacket, which she received as a gift from Mayor Bob Kilger, and she’s going to tell everyone about the Ontario city she is from. She says it’s a wonderful town and she hopes to have the opportunity to sell some people on at least visiting the area, if not settling down in it. “I’ll plug Cornwall left and right. I absolutely love my city. The people are amazing and the community is awesome. People I don’t even know sent me get-well cards (after her double lung transplant). You can’t ask for more than that.”

Needless to say, Ali is also a great ambassador for the organ transplant program.

As far as Ali is concerned, the organs go to waste after a person dies and she believes everyone should sign their organ donor card. Ali says she believes everyone is healthy in the afterlife, no matter what organs are left behind in this life. “It just gives some people a second chance at life,” she said.

Ali gets a check-up every three months for this first year with a new double lung and after the first year, the check-ups will come every six months. Ali recalls when she went for her new health card, the person working the desk asked her if she wanted to donate her organs if that time came. “I told her I’m double lung transplant recipient. The person said, ‘I guess you’re all for transplants then’,” she said with a laugh.

Ali says it’s been quite the ride over the past year, but with so many nice and caring people surrounding her, she knew she was going to win the race. Ali already has her “gold” medal. The rest is bonus.

Asked if she had anything else to add to the conversation, she just wanted to mention her family. “They’re very strong. I get a lot of my strength from my parents, I have to admit. It’s fantastic.”

Ali ended by saying, “I live in the best community ever.”

We’re the better for it because of your presence as well, Ali.

I’m John Divinski.

Haager's again, #4 I think...

Readers,

As you know, I am keeping everyone posted on my friend Emily and her battle right now.  She is a warrior and I intend on keeping everyone up to date on her condition. She is a great source of knowledge and a wonderful advocate for CF in California.  She is involved with the "Pipeline for a Cure" campaign that takes place in Hawaii, if I am not mistaken.

Every year she has been there in support of pro surfers giving CF patients, a lesson in surfing, and catching that wave of freedom. 

http://www.pipelinetoacure.com/2010/index.php

To learn more about Emily, I encourage you to check out her video on the Pipeline page.  You can't miss it, it's the second photo on the left-hand side.  

http://www.pipelinetoacure.com/2010/video-02.php 

Please learn more about Emily, as she is just like me.  She is waiting for a transplant, or to be able to have the assessment done.

She needs our love and faith right now.  I know we all have a lot to share, so let's give her some.

Check it out, I promise you won't regret it.  It's like the Great Strides on land, but for surfers.  okay maybe not, but it's really amazing.  Emily is an amazing woman, and she needs our prayers, keep her close to your heart, as you do with me.  Pray that she will be surfing again soon, cause that's what she needs to be doing.

Thinking of Emily and her family.

Love from CANADA

Alison

Ups and Downs

Just a quick update tonight to let you know that Emily had a mostly great day. After being a big sleepyhead all day Sunday, Emily woke up today and was ready to go with physical therapy. Her bright smile as I entered the room this morning was better than a ray of sunshine. She greeted everyone with a warm smile today and did a lot of communicating by mouthing words. She wanted to know about everything having to do with her treatment- all the numbers that we watch- heart rate, blood pressure, O2 saturation, vent volumes, etc. She was tracking what was going on and was not going to miss a thing.


By mid morning, she was sitting in a chair and doing leg exercises with a physical therapist. She sat up a second time and continued to work on getting strong. A parade of doctors checked in on her today. The GI team removed one of the four drains connected to her abdomen. The incision from her surgery is healing nicely. Her kidneys are doing well, too. The lung infection continues to be the major concern. 

The white blood cell count was up, indicating that there may be an increase in infection somewhere, most likely the lungs. During respiratory therapy in the early evening, she had blood in her sputum. The doctors are watching it carefully, and it seems to have subsided. Periodic bleeding is not uncommon for someone with CF, but it is dangerous if it turns into a major bleed. Of course, we were a bit alarmed, given Emily's complicated and critical state in recent weeks. Tonight, though, there does not seem to be any more bleeding and her respiratory therapy is going well. Let's all wish Emily a good night's sleep and energy for tomorrow's hard work!


Diane

Talking about me...

It has been brought to my attention, although some of you may not even care.  That I should be writing a book.  Well, low and behold, i am in that process as we speak.  I have been writing about my life for some time now, in a personal journal, and i think it's about time I share my antics with the world.

I had called the title of my book "Is this Destiny" and it's quite fitting actually, with the amount of shit that has gone on in my life.  I read about everyone else everyday, but I have no idea if anyone reads about me.  I have 25 followers, and that isn't nearly enough to start a campaign to raise awareness here.  How can I ge tout into the world that i am writing a book about myself, and my experiences with Cystic Fibrosis, what I have learned, who I have met, and what i can share with you, or anyone else.

This is my life, CF is my life, and I don't intend on letting it pass me by.  Eva sent out on a mission to start and leave behind a legacy.  Who can compare to a documentary about their life, when the opportunity isn't' there for all of us to share.  We don't have aspiring film producers and directors sitting in our homes, waiting for a call.  What can I do to get my name out there, at the same level if not a big lower, cause no one can compare to Eva.  Who do I talk to to get my sotry out there?

Well. I spoke with someone at IUniverse, it's a personal publishing company that i am thinking of working with.  It's not cheap, and it's seems to be a pretty interesting feat on my hands.  I plan to take this blog, and make it something amazing.  Something I can be proud to have my name attached to it.  i want to be big, I want to stand out, and I want to make a difference in someones life.

Making the decision to have a transplant, is not the easiest thing to do, and it most certainly is not an easy thing for family members to understand.  But i hope that my workd will make that transition a little easier, and a little more flexible and understanding.  When it was my choice to do this, I didn't talk to my parents until it was time for an assessment, and then it was all unrolling from there.

Assessment is the first step, waiting to be put on the list is the next step, and often times the longest one to wait for, then there is the agaony of being listed for the first time, but in my case the situation was different, I was so excited that i soulnt' imagine not being listed, then there is the wait time for the actual transplant.  When that call comes in, it's ike heaven opens up tis' doors and says, no more worries.  But there are worries, there is that chance that the lungs that are coming to you, aren't a match... then what... more waiting.

Some peoiple dont' make that list, and don't make it to the thrisd step of waiting.  I want to put a positive persepective on life, it's something we all need to know.  Transplant often work, they are not a cure for Cystic Fibrois, but it's another chance at life.

The way I see it, if you are going to lose everything, then why not take the chance on waiting... waiting never hurt anyone.  I had waited 29 years for my transplant, another month or two wasn't going to hurt.  I might not have survived, but it wasn't going to hurt, meds made sure of that.

Now that I have babbles on, I am seeking the help of my fellow readers.  I am attaching my personal email address to this post, as I want you to tell me what you think of me, before my transplant, how you knew me, and what it was about me, that inspired you or made you befriend me.  And if I only met you after my tranplant, what is it about me, that made you want to read about me, and be a part of my life.

All stories are welcomed, and might use some tid bits in my book.  You never know.  All the help is greatly appreciate.

With loving hope, and prayers for those who need them.

Alison

www.ccff.ca
www.cysticfibrosis.net