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

Cucumber Therapy...

Hello friends,

So, about 2 months ago, i bought one of those grow your own kits at Giant tiger, and I thought that since I absolutely love cucumbers that this kit was the way to go.  

Stupid me didn't think to take pictures of the initial process of germinating the seeds... 

WAIT I found 2, from about 10 days after planting the seeds.

 

So, it needs to be known that I have never successfully grown anything, well wait now, that's not entirely true, I did grow a tomato bush a few years back while Derek was out West. It was my therapy then, and it worked, until the plant produced 1 tomato and subsequently died. :(

So, deciding to try another fruit/veggie was what I was meaning to go for, and cucumbers are the key. They will definitely be more appreciated than tomatoes, nothing against them, just not our favorite. Mind you, show me to a fresh tomato, still warmed from the sun, and I will devour it, only fresh summer Toms though.

OK, so back to my cucumbers, my therapy for this summer.  Today I went to take a look at them since transplanting them in early July.  This is what the looked like after transplant. OMG, I just realized, I'm a surgeon, I "TRANSPLANTED" a living entity. bahaha, Don't think my surgeon would appreciate that.  

Just call me Dr. Alison Proulx, PD (Plant Doctor) teehee.

~ These were taken July 12, 2018

That is a critter guard, the white netting.  Had an incident with the plant
in the brown pot, she had her stem eaten.

~ Pictures taken July 27th, 2018

You know I have to admit, I am pretty proud of my accomplishments.  Here are my cucumber plants on the 27th, why have I not been posting these sooner.  lol

This gal seems to be a darker
green than the others

This gal is the one who suffered
some stem damage.

  

These girls seem to be smaller
than all the others, they seem stunted.

These two girls are the strongest,
they are the biggest of them all.

~ Large Plant update, August 3, 2018

I say large plant because I kind of gave up on some of the smaller plants.  They weren't growing at the same rate as my larger plants. But I will still keep them in their planters, because well, you never really know.

So, here is the big plant update, in pictures.

She is getting bigger!

We have FLOWERS!!!

~ So, August 8th, these are all my little babies...

These are my big plants,
 they have many flowers

Here you can really see the deep green
of one plant, I suspect a different
kind of cucumber in this one.

~ TODAY, August 14th, 2018 I would like to introduce you to some pretty miraculous little veggies, that I honestly thought would not make it to this point.

All plants have produced flowers,
I know it's a transplant miracle,
Just like their momma!

My Dark green Plant has, from what I can see, at least 4 Cucumbers starting... she also seems to be a creeper plant, creeping cross the pot rather than up her vine, she also does not posses the little climber tentacles to hold them up.

      

My larger plants. There are 2 very noticeable cucumbers starting... you can see her climbing tentacles to keep her upright and climbing.  Where my Dark green plant does not.

  

And here are my last two little plants who have flowered and are now just kind of, there, but I am not giving up on them, not yet.  Even though one is clearly compromised, she is still growing strong.

         

~ If anyone reading this, has any suggestions as to why these three plants aren't thriving like their counterparts, I open to advice.  Please note, they all have the same amount of sun throughout the day.

Thank you for taking this amazing journey into gardening and my own form of transplant therapy.  Helping another living organism thrive in new soil, now temperatures and new life.  

Welcome aboard the Transplant life.

Much love

~ 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!!

 

 

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

My life to live.

Good day my readers

It is my life that brings a smile to my face.  The people I know, the people I meet and the family I absolutely love.

It is this love I have for life that brings the most important aspects of my life together.  Not only does my family and friends hold special places in my heart, but so do the friends I meet on-line or wherever I go.  I met friends in Toronto that I will hold near and dear to my heart, the ones that came to see me after my surgery, and the family that kept me from going insane.  

You know who you are. 

Kevin & Erin McCue, Kevin & Bernadette Proulx, Chris, Jill, Morgan, Grace and Kyra Tessier, Shawna, Lindsay, Erin & Jeff, Judd, My mom and Dad, My In laws, Memere, Jim, Dave, Jim Brownell, Tracey, Rebecca Hardy (on more than one occasion, thanks Chris for training at that time) Cheif Parkinson, Mayor Bob Kilger, Tracey Trottier, Bobby & Noreen Richer, and the two most important men who were there for me at that very moment that everything happened, Chris Watt and the man of my life, Derek.  

Without all these people in my life, I wouldn't be able to say thank you, for being there for me.

Many of you were there in spirit and I thank you dearly for that.  I also have to thank the Pope, as he sent his well wishes to me through the Vatican, hard core, yeah I know.  Thank you to my family, who couldn't be there but I know they're there in spirit and love and respect to the donor family.

Today is my Donor day.  I always think of them, all the time, but sometimes it's hard to realize that I am here with their lungs.  I am still alive, and I can't believe it sometimes.  It's days like this that I just find my heart troubled when I cannot imagine what I have done to be here today.  Why me, why is it I get to live while another dies.  I can't answer those questions, I can only pray that I will be able to meet my donor in heaven when I get there.

So to my donor again today, I live because you died.  I live because you tried, and I live because your family thought it would be the best decision, and something you wanted.  THANK YOU!

And this is my blog for the night.  Until tomorrow I bid you Adieu and pleasant dreams, they are what we are made of.  Loving you all today and always,

Ali

It's in the words...

For those of you looking for a good read in the near future, I highly recommend reading Andre Agassi's biography. He is amazing. When he talks about the pain in his body, I totally understand where he is coming from. Not only did i experience that pain, or something similar, but I can also admit, that I was not privy to being able to lie down on the hard floor to make my back feel better.

My Cf friends will contest that sitting upright or laying down in a 45 degree angle, was the only way we could somehow get any rest. Otherwise the mucus in our lungs would growl at us, and suffocate us. Being able to lay down on your back, is a gift, one that a lot of us never get to experience.

Although I cannot say that I am one of those patients any longer. I was lucky, had my transplant and can sleep on any surface, any where at any time. And that is pretty much what i do. I have at least 30 years of sleep to catch up on.

Sending a "SHOUT OUT" to my dear friend Ronnie today. He's in the hospital getting an oil change, tuning up the motor and making sure things run smoothly. And you know what, when he's got all of us here, rooting for him, there isn't anything that can stop us. We're running for you Sick Boy.

I want to write a little quote that I got from Andre Agassi's book... here it is...

"Even if it's not your ideal life, you can always choose it. No matter what your life is, choosing it changes everything."

Isn't that awesome? There are a few other quotes that he uses, but I was stupid not to mark them in the book as I was reading it. This one stood up and was easy to mark because I had a Post-it sitting right next to me on the table when I was reading the last few chapters.

Andre Agassi is an amazing soul. His beliefs are amazing. He met Mandela for crying out loud. There was a quote he got from Mandela's autobiography that really made me smile, but, do you think can i remember the quote, NOOOOOO.

That will be my next read I think, Nelson Mandela's book. Thanks, Andre for inspiring me to read Mandela's autobiography and loving reading about who you were, and who you became. Isn't it funny how we always seem to quote other people, but never ourselves. Do you think others quote us when we say something meaningful and inspirational?

So for those of you who like pictures, like me, this is the cover of Mandela's Autobiography, which I am hoping to get for Christmas... hint hint, to whomever I know is reading this, and wants to get me something for Christmas.

Oh Christmas, why did i have to go and say that. Sorry about that everyone, I'll try not to do it again.

Much love to all, and Get Well wishes to Ronnie and all my other CF friends in for a tune up.

Bless you all.

Ali

Bronchoscopies, who knew!

Ladies and Gentlemen of the jury, the information i bring forward to you this day, will not only shock you into something you didn't know existed, but also prepare you for something a little more, out of the ordinary.

Bronchoscopies are a wonderful thing, after a transplant they can determine if you are "rejecting" your donor lungs. I had mine on the 24th of August, 2010. I took my time that day, waiting to get up to the office, and wait in the waiting room for them to tell me to strip down, and wear two robes. One for the front, and one for the back. I did what i was told to do, as always.

Usually my Bronch's are scheduled for the Wednesday's of my assessments, but this time around they had it on a Tuesday, and not just any Tuesday it was the Tuesday of Paige and Katie's birthday's. As you saw on one of my posts.

Anyhow. For some odd reason, the team up there, had me registered as having MRSA, which is not very cool. MRSA can be defined as the following:

Methicillin-resistant Staphylococcus aureus (MRSA) infection is caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.

Most MRSA infections occur in people who have been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints.

Another type of MRSA infection has occurred in the wider community — among healthy people. This form, community-associated MRSA (CA-MRSA), often begins as a painful skin boil. It's spread by skin-to-skin contact. At-risk populations include groups such as high school wrestlers, child care workers and people who live in crowded conditions.

I don't nor have I ever had MRSA.

So to my astonishment, I was whisked away into a room, a very isolated room, that was cold and not of the fun, light and brightness of the usual room I go to. The windows are closed, the blinds are closed and there is no one to talk to. You are literally ISOLATED! Not fun. usually i have the nurses to joke around with, and tell my funny stories to, but nothing. Then suddenly, there is a knock on the door, and there is a nurse there, in full precaution gear... face mask, gloves, hair net, isolation gown, booties and all the necessities for an IV.

My Port a cath isn't working properly, so I had to have a regular IV. They hurt going in, but the tingling sensation of the needle goes away.

As she has plugged me in, and prepped me with the mandatory throat numbing gargle, and inhaled solution, I am whisked away to the OR, where the begin the process of the Bronch.

First things first. My Doctor, Dr. Lianne Singer, the Dr. responsible for putting me on the list, is my Dr for the day, and i am so excited, I love her. She sees me, laughs, cause i told her the day before at clinic that i love getting Bronch's done. She thinks I am nuts, but I really do love them. She says to me, I'll be with you in a second, I need to change my iPOD song. She changes it to Elvis Costello's song called Alison; i am speechless, Dr. Singer is flushed.

I am given a sedative, as the numb my throat a little more, so i don't really feel anything, and I don't gag as they do it. I used to gag, then they sedated me. I don't know what they give you when they put you under, but they are awesome. I love the sensation of my body when it happens. It's gradual, but it's so relaxing. For an hour i don't know where i am, who I am or what i am supposed to be doing. It's like my kind of drunk, but without the painful side effects of a hangover.

I talk for a little bit, then they stick the spacer in your mouth, so they can guide the camera down your throat. I remeber the guide/spacer being put in my mouth, then... NOTHING! They cover your eyes, and then its just a matter of time, before you wake up in the recovery room, wondering, is it over already... can I do it again! Seriously, i am that weird.

As I come out of my stooper, I think, wow, this technique, this scientific method of dissection is going to help save my life. while they do the bronch, they take a biopsy of the lung, to see what's growing, and if there is any rejection going on. I think this should be done once a year in the CF clinics across the world. How much easier would it be to determine what the hell is going on in there. Just like my theory on Transplant assessments. They should be done as soon as someone's PFT (Pulmonary Function Test) are down to less than 30%. Before they are too sick to be transplanted.

I will get the results in about a week, and when that time comes, and those results come in, you will know, I promise I will tell you all, and you will know.

Until then, my fellow CF masters in crime. I bid you Adieu.

Tootles
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.

I would like to know...

Good Evening all,

I was just pondering the thought, as to how many people became organ donors after reading Eva's blog and saw her documentary?  It would be interesting to see what the numbers look like now.  If anyone knows the answer, please feel free to enlighten me, about what your country's Organ Donation count is at.  How many peeple in your country are willing to give their body to someone else who needs it.

The question often brought to my attention is whether or not i am an organ donor.  And the answer to that is simple one word "YES".  I have even asked my doctor if my donated lungs, can then be donated again, should I move on to a better place form a car accident or something like that.  I still hve not gotten a response yet.

Nor have I heard from my donor family.  i really want to hear from them.  I want to learn more about my donor than I can possible imagine.  What did they do for fun?  I want to know what they thought of my card, and the fact that I brought their loved one to Vancouver with me.  Whoever gave me these lungs, has tobe very strong, and have a strong family.  Otherwise I wouldn't be here today.

I live everyday for me.  I don't take anythign fro granted, I try to give back as best I can.  I try to educate people on CF, but in small town, it's hard to get sponsore for events that try to raise money for a good cause.  If it weren't for all those donations to the CF Foundation, it wouldn't have given me the chance to live to this age.  At almost 31, I can't imagine what it would be like to not be here.

When I was sick, that's all I could thin about.  When I was going  to go, how much longer I would be here, and most importantly who is going to take care of my family, when I am not around to hold them close when they hurt. That was my job, and is my job.  But who will do it, when I am gone.

I will love long, but not forever.  The chances of living forever, doesn't exist.  I could have the lungs of a 50 year old woman for all i know.  But i am thinking not.  I am too excited and energetic to leave this world without making a difference.  Eva has her documentary, now it's my turn to make a splash.  Eva, this one's for you.

I am writing a book as you all may have seen.  and it's going okay.  Not as productive as I thought, but going.  i will keep you all posted as to my adventures in writing.  Wish me luck.

Love always
Alison

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

Confessions of a transplant patient...

Today was the funeral for our good friend Malcom, who passed away suddenly. I'll admit, i am not the first one to talk about death, dying or anything along those lines, but lately... well it's all I can think about.

Malcom was a young free spirited man, who loved to fish, take things apart and not put them back together. He was one of those souls that you just loved no mater what. We weren't close, although his older brother is like a son to Derek and i. We took him in, and loved him. As any good friend would do.

But today was different. It made me think that, what if the surgery didn't work, what if it wasn't such a huge success, then some of these people (The Watt's my Dad and Derek) would be grieving like they are for Malcom, but for me. Okay, I know this may sound selfish but come on, you can't tell me that when you go to a funeral, you don't start to think of your own mortality?

I started thinking, I think I want to have a wake now, it's a way of closure, I didn't see it that way until today. Malcom looked great, peaceful and at ease. But I remembered what Jim Bob Duggar told his son, when he asked why Grandpa Duggar wasn't breathing, he said "Grandpa Dugger's body was just god's way of putting a face to the work he wanted done. Now his sou is in heaven, and all that is left behind is the body of the person we love." This was a 6 year old asking the question, and the best answer I heard from an adult in a long time. God bless the Duggars for being up front and honest with their kids.

So now I think I want a wake/viewing. I guess it depends on what you look like when you go. If I look half as good as Malcom does, then I am for it. If I look like shit, forget it. lol

Needless to say, today was and is a tough day. You try to be strong, but you break down. My Dad was there, and was strong. He came to support Chris, and bless him for that, cause he ended supporting me in the long run. Father Kevin's service was beautiful, Malcom would have enjoyed it. It wasn't long, and it wasn't only the bible, it was explanation and hope for the rest of us. What a wonderful man, Father Kevin is.

We are all going to go at some point, and some before others. But until that time comes, you have to do what you were put on this earth to do. I think mine is to educate and explore. If going to the Olympics in February isn't exploration enough, I don't know what is.

Much love to the Watt family,(Steve, Sylvie, Chris, Nicole, and Stephanie) no matter what the time, we are here for you, no matter what the day we are here for you. Friend for life is what we are, in life and death, you will forever be remembered.

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