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

Thursday, April 29, 2010

My dream about Eva


Last night, for the first time since her passing, I had a dream about Eva.  I never got to meet her, but we wrote. And she was a beautiful, kind intelligent soul.  and from what i encountered in my dream, she was quite to comedian.  She laughed with me, cried with me.  In my dream i remeber calling her  Eva, and saying that I didn't want her to go.  She then gave me a big hug, and told me not to worry, things are better this way.

She is right.  She doens't hurt anymore, she can breath easy.  Knowing that gave me peace of mind.  She is as beautiful in my dream, as you could possibly imagine.  Her beautiful red hair glistening in the summer sun.  I never thought I would wake up feeling so at ease with my life, and decisions I have made, but I did this morning.

Eva was a shining star, not just in the sky, or in our eyes, or on the stage, but in a community where life is so uncertain.  It can change so rapidly, that we don't even realize it.  As my friend Ashley said in her blog, I look in themirror at my scars and can't believe that this is what I went through.  The wait so short, the healing so quick, and all i have are scars.

i wish I could see what had really happened, or live through what my family went through, just for a oment.  But that will never happen.  I loe hearing what my familt have to say about what they went through, now if I could only get them to put pen to paper so I can add it to my book.

I am listening to Alison Krauss, and the song she is singing reminds me of Eva.  It's a perfect fit for her.  Although it might not be her style, but it's definetly a song I can see her singing.  With her voice of an angel.

"The smile on your face let's me know that you need me,
there's a truth in your eyese saying you'll never leave me,
the touch of your hand, says youll catch me when ever I fall,
You say it best when you say nothing at all."

The radio station I am listening to is exactly the kind of thing I need to listen to, to remind e of all the important people in my life.  Here is a list of my CF friends that I hold close to my heart... Eva, Amie, Ashley, Conner, Emilie, Emily, Cara, and Meg.

Well, I can't change the outcome of some situations, I can only pray that my friends stay as healthy as possible, and hold God close to their hearts.

I love you all, and can't imagine my life without knowing you.

Love always
Ali

My Sister's Keeper
Change of Heart: A Novel

Wednesday, April 28, 2010

Emiliy's Update #7 & 8 ... April 28th, 2010

"The best and safest thing is to keep a balance in your life, 
acknowledge the great powers around us and in us. 
If you can do that, and live that way, you are really a wise man."
~Euripides


This is Em's update again, I know i should be writing about myself, but em plays a vital role in CF, and she should be recognized for what she has been doing.  With praying for her, and making it a point to let the world know how valuable she is, it just might help her get back on her board.

Pray and Pray as much as you can, to ensure that Em, get's all the prayers she deserves.

Thank you
Ali


A Tribute to Emily, taken at the Vancouver Olympics 2010,
You could find the Inukshuks in perfect balance all over the river front,
Here's praying you become balance soon.

A Delicate Balance...

Hello all, we're still here and there hasn't been much progress. CO2 is still dangerously high and Em is still holding a delicate balance. The plan has been to do dialysis to remove fluid (with hopes to lower CO2) but dialysis has been unable to get going because Emily's blood continues to clot in the machine...so they are measuring blood viscosity (thickness) and going to be giving her heparin to help thin the blood so they can get dialysis rolling. This is risky because of the bleeding she has had in her lungs and GI system but they need to remove fluid because her body, lungs, etc. is still very edematous (puffy and full of fluid, toxins, etc.) the fluid and toxic buildup is contributing greatly to her high CO2 levels. Lowering CO2 is the primary goal of today and the doctors are having to make very difficult decisions.

Today they did an additional EEG to check brain and neuro functioning and we are awaiting results--we still don't know much more about what is happening in her brain and may not know for some time. They have also sedated Emily and have given her body a paralytic drug so that the vent machine is able to process her oxygen as efficiently as possible. It will allow the vent to be run at a lower pressure lessening the risk of a pneumathorax (collapsed lung) and hopefully allowing her body the ability to focus on processing the O2-CO2 gas exchange. They are switching vents to one that runs with a helium-oxygen mix which can also help improve the CO2 levels in her body.

Much is happening and we are hoping to see some progress over the next few days. Everything here is in an extremely delicate balance and we are very worried. We know as always that Emily's life is in danger but we also know that she has an amazing ability to surprise everyone. Please continue to pray and send healing thoughts our direction.

Thanks so much, hugs and love to everyone!

Julia

------------------------------------

"We can be sure that the greatest hope 
for maintaining equilibrium in the face of any situation 
rests within ourselves."
~Francis J. Braceland

------------------------------------

Balancing things out

Hi, All. Diane here. I am happy to report that this morning, things seem to have stabilized a bit for our wonderful, strong Emily. Her CO2 level has come down significantly, but is still high. The dialysis has been going successfully since last night and they are gradually reducing the edema (swelling) all over the body. Her blood pressure is stable. The vent pressures and volumes are gradually getting better, though not there yet. There has been no bleeding in the lungs or trach site. I think it is safe to say that in terms of vital functions, we are trending in the right direction. This is such a relief because 24 hours ago- even 12 hours ago- we were very worried. Yesterday was a very stressful, worrisome day.

It will take time to get more info on the neurological impact of the code blue event. From Sunday to yesterday, her basic responses have varied and she is unconscious. There are still multiple factors that could affect her responsiveness- CO2, kidney function, etc. We have to keep waiting and praying on this front.
 

On a personal note, I am so very glad to have my sister, Nancy, visiting this week from Ohio where I grew up. We are close and share the bond of being CF Moms. Nancy lost her son, JD, to CF fifteen years ago at the age of nineteen. I have been telling her not to come because I thought it would be too hard for her to relive this hell, but she is quite stubborn and insisted that she wanted to be here for me. I can't express how much I appreciate her and love her company
.
As we go through this day, we are just continuing to celebrate small signs of improvement, regather our strength, and get ready for the challenges ahead. Thanks to you all for your continued support. We are encouraged beyond belief!


Love,
Diane



"Live a balanced life - learn some and think some and 
draw and paint and sing and dance and play and work every day some."
~Robert Fulghum

Emiliy's Update #6... April 26th, 2010

 

Uncertainty and Crisis Management...

Posted Apr 26, 2010 6:24pm
 
Hello, All. Here we are, again, waiting and holding our breath to know exactly where we are. Yesterday was such a frightening experience. After the code blue yesterday a few things have happened...we initially got somewhat misinformation about her neurological brain functioning--it is not completely determined as "normal functioning."

So lets clarify where we're at...her kidney function is not completely impaired but not working to its full extent...the kidneys are a bit in shock, the CO2 in her system has skyrocketed (meaning her lung function and gas exchange between Oxygen and CO2 is not working well) and, while the EEG yesterday did show brain activity, it was not fully normal brain activity, meaning they are concerned there might be some sort of brain damage--whether the damage is reversible, to what extent is is damaged, etc. we will not know for some time. Since, she has high CO2, and BUN (kidney toxins) which also impair brain activity they do not know exactly what is causing what and to what extent the oxygen deprivation from the code blue has affected her brain.

SO...we are shocked, scared, frustrated, concerned, etc. and taking things day by day/hour by hour. The plan for today is, rotation and light CPT/suctioning to help move mucus in her lungs and improve CO2-Oxygen gas exchange, Dialysis is ordered to clear toxins and remove fluids from her body (she has too much fluid impacting her lung function), and the neuro team will be continuing to monitor her and will repeat the EEG later in the week. We don't have a lot of answers as to what's happened and why but we do know a few things. Emily is strong and feisty. Her strength, gumption and strong will have always proved to be her greatest asset. We know that miracles have happened in her and will continue to happen as we all pray and continue to surround her with love. We hope, as always, that she will continue to defy all expectations and come back to us in full strength and we ask that you all continue to pray as often as possible for her (we are continuing to pray on the 14 of every hour).

Much love and hugs to everyone,
Julia

p.s. we are currently cycling through a playlist of great Hawaiian tunes, worship music, etc. that everyone has sent Emily over the last few months, hoping Emily enjoys the fun tunes :)

Emily Update #5... from April 26, 2010

Emiliy's post from April 26th.

I am posting her newest one after this, a lot has happened and I regret not informing everyone earlier, but our support and love is needed right now, and always for Em and her family.

Please PRAY for her!


Thanks

 

 

He is Mighty to Save!

Posted Apr 26, 2010 2:27am
Give thanks to the Lord for his unfailing love. For his love endures forever.
(Psalm 107)


Her are the lyrics to a worship song Emily was signing last Sunday, “Mighty to Save”

Everyone needs compassion,

Love that's never failing;

Let mercy fall on me…




Savior, He can move the mountains,

My God is Mighty to save,

He is Mighty to save.




This is exactly what happened at USC University Hospital in Room 715 today. God has produced yet another miracle in sweet Emily, His might warrior. Every indication today pointed at bad news. Yet, here we are celebrating a small bit of good news- neurological tests showed no brain damage!

The Code Blue event was particularly troublesome because we know that Emily spent some time without a clear airway and there was a high potential for oxygen deprivation. Going into last night, her CO2 level was already high, meaning that her lungs were not functioning well. The Code Blue experience was traumatic for her body, especially having endured so much in the past 12 weeks.


Emily spent the day recovering from this morning’s event. She rested in bed with light respiratory therapy treatments and was unconscious and non-responsive to all stimuli. This lack of consciousness was very troubling to all of us. No one was sure if there was neurological damage done in the moments she was oxygen-deprived. In fact, a bedside exam showed that there were concerns of brain damage, but they could not say if it would be permanent. She was unresponsive and did not even have some of the normal reflexes. 

The neurology team then did an EEG to ascertain the possible impact. We waited an excruciating five hours for results. We have just found out that the test showed no brain damage. Wow! We are elated and overjoyed that our daughter has survived another mighty battle. Emily has many challenges to face tomorrow, and we’re so thankful she’ll be ready to meet them.

Thank you all for your mighty prayers today that sustained Emily. 

God bless you all!

Sunday, April 25, 2010

Cornwall is going to the Olympics

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.

Articles about me...

Taking 'Great Strides' to support Cystic Fibrosis Foundation

Posted By MICHAEL PEELING MPEELING@STANDARD-FREEHOLDER.COM

Posted 10 months ago

The local Great Strides Walk exceeded expectations Sunday by raising more than $16,000 for the Canadian Cystic Fibrosis Foundation
.
Cornwall chapter president Kim Baird attributed the success of the fourth annual walk, buoyed by 75 walkers at Lamoureux Park, to the generosity of donors and an appearance by Ottawa S enator s player and Long Sault native Jesse Winchester.

"It has turned out to be an excellent day," Baird said at the start of the five-kilometre walk near the clock tower. "The attendance is building along with awareness and participation." 
 
Sponsored by the Kinette Club, CIBC and StarTek, all three gave major donations to the walk.
Baird said one of the great strides made because of fundraising is the push for early testing for CF, a sometimes deadly, inherited disease that impedes the ability to breath and digest food.


"If a child isn't tested early for CF, they sometimes end up being treated for asthma instead, but if they are tested early and get the right treatment, they have a better quality of life," Baird said.

The Fontaine brothers, Evan, 8 months, and Jack, 2, were fortunate enough to benefit from early detection.
While at the walk Saturday, their mother, Christine, said Evan was tested for CF at birth, but when the doctor described the symptoms they were looking for, she said, "Hey, that sounds like my two-year-old."
"It's great because it means they are getting a better start in life," she said.


"Jack used to be tiny because the enzymes he needed to gain weight weren't working. Now he can digest food and he is much healthier.

Myles Lynch, 11, was diagnosed with CF at birth, so he has never known life without it, but he was hard-pressed to describe the difficulties living with the disease has caused him, other than laboured breathing when he runs. He was more excited to meet Winchester.


Alison Wilson-Proulx, 30, a double lung transplant recipient, said Facebook had a lot to do with the great attendance at Sunday's walk.

Sponsor me on my Great Strides™ Walk Page. I’m taking steps to find a cure for CF #GreatStridesCDN

Sponsor me on my Great Strides™ Walk Page. I’m taking steps to find a cure for CF #GreatStridesCDN

Saturday, April 24, 2010

Messiness...

Life is messy, plain and simple.

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

I have found the unltimate meaning for the word Dirty,

CHECK THIS OUT...


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

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

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

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

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

here's Emily again:


Here is Conner with his Mom Sarah,


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

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

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

Ali's Army 2010

Thanks for your continues support.

Cheers
Alison

Tuesday, April 20, 2010

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

Eva's Goodbye! We miss you :(

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

Everyone,

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.

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


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 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

Sunday, April 18, 2010

Cystic Life Network

Well, I have just joined a CF netwrok, called Cystic Life.  What an amazing site.  You can read posting that other with Cf put up, like reading their blogs, and help them figure things out.  It's what i have eben trying to do here for some time now, and never really thought I was making a difference.  No one knows about my site, and no one really reads it but be.

Not only that i have found a site that will publich my blog for $40 some odd dollars, and it's tempting, oh so very temping.  i might consider it, but I still blog my heart out.  I tell eveyone what's going on, and whant to tell the whole world ina book.  Well okay, for selfish reasons, I want a book.  I want to think that I am capable off making a difference in what I write.

So maybe I am a skeptic, and think it will work, or is that an optimist?  I never really understood the difference, and still don't.  At 30 years old, you would think i have learned that stuff by now.  But, no, I have not. lol

Well, there really isn't much to report... I'll let you know about Emily when I hear nore.  but your prayers are working, and i couldn't believe it when i read the last entry.  I am so proud of you Em, I hope things will keep working out for you.

Loving you always

Emily Haager, who has cystic fibrosis, speaking about connection between...

Haager's #3

Emily's new post...

We're so proud of her, I can't wait till she's up and surfing again.
Go Em go!!

Ali

A Good Close of the Day...

Hooray! Emily's surgery to close the abdominal incision was successful. The surgeons were delayed. It did not start until around 7 PM and she came back around 8:35. The surgeon explained that they were able to close the incision. She has some temporary drains to remove liquid and a binder for support so it won't pull apart. They expect her to sit up and move tomorrow.

We are delighted that this phase will soon be behind us. Lots of healing left to do, but at least now we're on track ! We know that Emily will be very sore and it will take some time for her to heal from the surgery. We look forward to seeing her jump into physical therapy to get strong and get well!! Thanks, all, for your prayers and encouragement today.


Love,
Diane


PS- I dropped my phone in the toilet today, so if you are trying to call me, don't worry! I'll get a new one tomorrow:)

Thursday, April 15, 2010

Keeping up with the Haager's... PART 2

Hey Everyone,

Just keeping you posted on Em.  She is doing better.  They are really good at updating daily.  And I will try to keep up.

Keep praying for Em, it's working


Love, 

Ali

This is Emily!!!

 

A Day of Forward Movement

What a great day!! Emily is doing very well today. She is alert as the sedation has fully worn off. She is getting enough pain medication to be comfortable but not enough to make her groggy. What an incredible blessing to just have a simple day of being with the real, lovely Emily!! Now that she is aware of what has happened and where she is, she is ready to take the steps needed to finish the race. She wants to walk out of here and get back to her life. What a great day that will be...

Emily is alternating between sleeping and activity. When she was awake today, we have chatted. We are getting better at reading lips, and she has been able to write to us a bit. Her vision has been blurry today, but it is getting better. We are going to try a computer to see if she can type. Thanks, Richard, for bringing us a small, manageable laptop. We have played Connect Four and will soon attempt a card game. Later today she may try to move to a sitting up position in bed. This is all much easier now that she is in a regular hospital bed. Yes, we said goodbye to the Roto bed. It has served its purpose and we are moving on!

Her new trach is working well. Respiratory therapy is going well and her lungs seem to be clearing out a bit. There is still much healing to do in her belly. We continue to hope and pray that the swelling goes down enough to fully close the incision on Friday.


The main job now is to get strong. She will resume physical therapy (PT) and Occupational Therapy (OT) tomorrow. She needs to sit up and take a few steps to meet criteria for the lung transplant list. If today is any indication, she will get there in record time. Bravo, Emily! You should feel very pleased with your accomplishments today:)


"A SAD SOUL CAN KILL YOU QUICKER, 
FAR QUICKER THAN A GERM"
~JOHN STEINBECK 

Tuesday, April 13, 2010

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

Keeping up with Haager's

Well, I have been following Emily's hospital care blog, religiously, and was worried for a bit, when I didn't see anything. Low and Behold, when I checked it this evening, there she was. The blog I had been waiting for. I guess that's what happens when you are in different time zones, things take longer to be posted. But that's cool.

Here's the latest on Emily and her journey:


A Day of Healing

Sorry for taking so long to send out an update. I hope you weren't worried. It has been a busy day. Everyone on Team Emily has returned to work at least part time, so it is sometimes hard to post when we are splitting time between work and hospital. All is well with Emily. We can all breathe a collective sigh of relief.

Emily had a lot of pain today from her large abdominal incision, but she is really doing well. You may recall that they did not close the wound in order to let the swelling go down. If they had closed the incision, the swelling would have pushed against the lungs and reduced her capacity to breathe. Leaving it open allows the lungs to expand. She has had a wound-vac bandage covering the incision. This is a special bandage with drains coming from it. It keeps the site sterile and pulled together, while draining fluid from inside.

Surgery is scheduled for tomorrow morning (Tuesday). In the OR, they will determine whether the swelling has diminished enough to close the wound. If so, they will clean it out and then close the incision. If not, they will clean it out and put another wound-vac on it. We are hoping and praying that they are able to close it. That would mean that Emily can return to the business of healing and getting up and around.

While Emily is in the OR, the trach surgery team will replace her makeshift trach, a tube used in surgery, with a custom-fitted new trach. This will give her more ability to return to sitting up and getting stronger because the surgical tube requires her to be very still.

The good news of today is that her lungs are doing much better. The doctors reported that a current x-ray shows much less infection and the white blood count is much lower than a week ago. We are delighted with this news.

Today has also been a day of talking with Emily. The sedation from last week has finally worn off and she is much more cognizant of what is happening. She asked us to tell her everything that she could not remember, so we have filled in the blanks for her. She learned of the Code Blues, the stomach surgery and the plans for transplant. We unfolded the story for her slowly and tried to help her digest it. It is still a bit frustrating for her to mouth words and depend on our lip-reading.

Once she can sit up, she will be able to write or keyboard. She is overwhelmed with this knowledge. As I read the Care Pages to her, she became fully aware of how many of you are checking in on her, encouraging her and praying. This also caused her to tear up.

She is blessed beyond measure by the love and support she has received.

Thanks to you all for your continued encouragement.


Em, we are all here for you.

for more information on Cystic Fibrosis, please visit the following web sites...

www.ccff.ca

www.cysticfibrosis.net

www.cysticfibrosis.com

To read more about Emily's story, or follow her blog you can see it at the addresses listed below:

www.journeywithem.blogspot.com
www.carepages.com/carepages/emilyhaager

Thanks!
Ali

Monday, April 12, 2010

Too much sadness

I have been following some friends of mine for about a year, that I have met online. These CF freinds have helped me through tough times, and also through the good times. It's a wonderful thing to have people close hand, who understand that having CF isn't a picknic.

There always seems to be bad news that goes around, and unfortunetly, as you have read before, there is some sad news in the CF community again. As you all are aware, Eva Markvoort, the Cf ambassador for the world, with her documentary about her transplant called 65 Red Roses. Eva had passed away on the 27th of March, only 3 days before her birthday. She will be sadly missed by all who knew of her, knew her personally and those who lived vicariously and wishfully through her. Eva will be missed by all.

Last session I wrote, I spoke of Emilie from Ottawa, who had passed away a few days before Christmas, and our sympathies are with her family also.

But this is not about Eva and Enilie. This story is about another CF'er who needs out help. her name is also Emily, and she has been fighting infections for a few months now. I have been keeping up to date with her blog. I have posted her last entry here, and also the entry of her family from the "Caring" page.

Resting on Sunday
Posted 20 hours ago

Emily is having a quiet, restful day today. Unfortunately, she finds this a little boring. She said she feels lazy and wants to get up and move around, but we have to keep reminding her that it will be a few days until she can do that. She is going in and out of sleep.

Our main job today is to keep her distracted when she is awake to help her pass the time. Her nurses and RT are working hard to keep her comfortable and free of pain.Surely, this young woman is protected by a cloud of prayer surrounding her! We are amazed at how well she is recovering from the intestinal surgery.

Though the surgeon said she would likely go through some tough times, we have not seen them. She has had no bleeding, which was the greatest danger, her vitals have remained stable and she does not have much of a fever. She is experiencing pain, but it is under control. She must be still as fluids continue to drain from her abdomen.

Honestly, she seems to be doing very well today.Her doctors have tentatively scheduled the trip back to the OR to close the incision for Tuesday instead of Monday. She needs more time for the swelling to go down. At that time, they will sedate her again so they can thoroughly clean out the surgery site and close the wound.

Tomorrow, then, will be another quiet day of rest (we HOPE).Because the sedatives have now worn off, Emily has been very alert and communicative today. She is getting very frustrated with our limited ability to read her lips. She wants so very much to talk.

This morning, she was amazed to learn that it is April. She is aware that she has missed so much out in the world. She is also learning that she has a long road ahead of her. She really wants to know how long it will be before they remove the trach and she can get her voice back again. We long for that day!!

Until then, let's keep praying for Emily to stay on this positive trend.

Diane

I will keep everyone posted on her condition. Keep her in your paryers it's working so far.

Thanks
Ali

CF info at: http://www.ccff.ca/ & http://www.cysticfibrosis.net/

Friday, April 9, 2010

Great Strides 2010 at OneTrueMedia.com

This is my first attempt, well actually my like 10th attempt at one of these, and i couldn't find a nice montage so I stuck with what works. Nothing, just pictures and music.

Hope you like it!


Make an on-line slideshow at www.OneTrueMedia.com

Thursday, April 1, 2010

It's in the MEMORIES!

It is a sad day int he CF community. On Saturday March 27th, 2010 a dear friend, and star of 65 Red Roses, Eva Markvoort passed away. She was a bright, beautiful and strong woman. She gave hope to millions who suffered with Cystic Fibrosis and the decision to take the next step in having transplant.

As many of you know, I have already made that choice, and I am feeling wonderful. But when I heard about Eva being sick, I wanted nothing more than to take her pain away. Just as I want nothing more than to take anyones pain away. CF is not a nice disease to have, it plays mind games, and treats you like a punching bag. It severs your train of thought, when you want to say "No I can't do this anymore." You end up saying, give that one drug another chance, it worked before maybe it will work again.

Eva's life was filled with laughter and pride. A strong heart and family and friends, helped to keep her spirits up. When she started having her complications, with the Chronic rejection and all I wanted to give her what I could, and I couldn't give he the one thing she needed the most... NEW LUNGS.

My husband has been gone this past week, and I have had time to reflect on my surgery and everything that it involved. All the doctors, and the nurses, and specialists. I can't imagine, or don't want to imagine what it's like to live on the other side of this earth. I do not want to know if there will be someone waiting for me, when I cross that line. I am not afraid of death, I have said this before and I will say it again, over and over... I am not afraid to die, I am afraid of leaving my family behind.

We take with us the things that make us happy, the things that bring a smile or small little laugh to our lips. But do we ever consider the things that made us stronger? The things that made us cry, made us hurt and made us lose control of our emotions. Why don't we think of those things. Is it because it is so painful... it's a part of who we are, and what we have become, so why deny it.

Eva, if you are looking over my shoulder tonight reading this, you are a courageous and gifted young lady. Who has taught so many people to be who they really are, and not a blank page of nothing. You encouraged Organ Donation and showed what it can do for you, and me, and everyone else. I will try to continue your legacy, and your determination in this matter.

To your family, who will read this, I am dedicating my Great Strides walk in your memory. You will live on forever int he documentary of your life, and your friends. May you always look into the mirror and see what we all see. Because it is a beautiful sight.

To find out more about Organ donation and the gift of life please visit:

www.giftoflife.ca

and for more information on Cystic Fibrosis, check out:

www.ccff.ca
www.cysticfibrosis.net

Peace to the world.

An article from the Vancouver Sun about Eva. We miss you beautiful girl!

http://www.vancouversun.com/Business/beautiful+girl+Markvoort+loses+fight+with+cystic+fibrosis/2737145/story.html

EVA WON THE SUMMERHAYES AWARD THIS YEAR 2010.
SEE THE VIDEO AT THE LINK BELOW,
IT WILL MAKE YOU CRY, SHE'S SO SPECIAL.


http://www.vancouversun.com/Business/Video+Markvoort+receives+2010+Summerhayes+Award/2737736/story.html