My Story of Breathing Easy...

Cleaning House

2012-01-12T21:28:00.000-05:00

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

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

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

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

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

Love to the Msrtinez family, and all the world.

Ali

It's not my Thanksgiving, but i am thankful

2011-11-24T21:34:00.000-05:00

So today is Thanksgiving in our sister country on The US of A and what am I thankful for, well let me tell you.

I have written a little something for my Donor and his/her family and it goes like this this, while it moves life Jagger...

Okay, so I cannot seem to find this wonderful peice of writing that I has so meticulously placed in a safe place that I, myself cannot find it. So much for super sleuthing.

Today on our news channel CTV Ottawa, which covers all of Eastern Ontario and part of Western Quebec, my friends Mandi and Ronnie Sharpe made it to the new channel. They are all the way out in Arizona somewhere and what should my brown eyes see on our news station, but Mandi holding up her pregnancy test. Yep you heard it hear follks, the Sharpe's have made their way into Canada. WOOHOO. If you are on my facebook you can see the whole video there.

On to why I am thankful this american Thanksgiving day.

1) my donor family

2) My family all of them

3) My American CF family, actually all my CF family

4) My faith in God and his creation in me and my donor family

5) You, yep you. You are here today reeading my blog and knowing that you are here reeading this sure makes me feel alive and loved.

I cannot believe that it will be three years soon that i have been blessed with a new set of lungs. I might also be blessed with a new job, that will finally allow me to save and visit my friends around the world. First place to go is Idaho for my good friend Meg's Baby shower in January, then hopefull to Arizona to see Mandi, Ronnie and Makenna, then to Virginia to see Cara and Patrick and maybe have a tour of the Air Force base in Norfolk where "P" works. TOP GUN I might ass. Cara's got herself her own little Maverick, although taller and better looking.

My need to visit with other CF'ers is something I have always dreamed about. We are not suppposed to be in contact with each other, but i don't know if it's the same after transplant. I will double check with my doctor and see what they say about the whole thing. I know none opf them have Cepacia or MRSA so maybe it is possible. When I think of Meg having a little one, I think about Eva, she woud be so proud of Meg and the tough road she has come down, only to welcome a little man into the world in 2012.

I love babies, you show me a baby and I go nuts. I decided not to have children as my body had been through enough. There are just some things I wasn't meant to do. Give me any baby and I can put them to sleep, I have this thing, this knack I guess you could say. I have been called the Baby Whisperer! Give me your restless baby, and i can calm them down, no problem. It's a thing, I can't explain it. *laughing at myself*

Well there's not much more to say tonight, I will be back tomorrow with some pretty cool news or not. Depends what happens.

Much love, Happy Thanksgiving to my American Cyster and Fibros.

LOVE LOVE LOVE

Ali

Why Me?

2011-10-27T19:48:00.000-04:00

This is a sad blog today. A good friend of mine in the UK has passed away. Rachael and I met online through many friends. Things are starting to make me wonder why i am here and Rachael didn't make it. I am attaching the link of her memorial tribute by the BBC in the UK. I have also Dedicated my profile picture to her.

This could be any of us, but Rachael :"Rachy" was someone special to me. Those that knew her and followed her know what she went through. I am losing so many friend cause people don't sign their organ donation cards. Is it worth that much that you have to take you organs with you, to not be used by anyone else.

Try saving up to 8 lives with major organs and hundred more with tissue, blood and and more.

http://www.bbc.co.uk/news/uk-england-manchester-15486492

Above is the link. Please read the article, watch the video and think of all the wonderful things you can do, and the wonderful children and adults you can save.

If you haven't thought about organ donation, please talk to your family. Make sure your swishes are known with your friends and family. There is too much sadness in life, if you could save someone when you decide to leave this world, or rather it's your time to leave this world, wouldn't you want to live on through another person. Rachael can be your daughter, niece, Aunt or granddaughter, why would you chance loosing them again.

Please talk about Organ donation, it saved my life and can save yours when you need it.

Love you Rachael, always and forever!

Ali

The Good Life,

2011-08-25T11:51:00.002-04:00

This video says it all. Need I say more... Definetly not.

Enjoy!

Love you all

Thank you all

That is all.

Ali

Mt favourite Sports & Athletes

2011-08-23T21:47:00.000-04:00

I had a dream. When I was younger, I was taking Synchronized swimming. Which would help tremendously with keeping the lungs clear, the breathing techniques alone where my physio. Try holding your breath for 22 seconds, while flailing your legs and dancing underwater, flipping, hanging upside down and counting in your head. Trying not to forget that you have to keep your legs out of the water, scull and eggbeater when you are preparing for a lift.

DON'T TOUCH THE BOTTOM OF THE POOL, it's a deduction, oh the judges can see it, underwater cameras. Synchro was my life. I chose it over gymnastics when I made both competitive teams. Then I found out to make it big, you have to move to Quebec. I was 13 years old, do you really think I want to move away from home... ummm no.

I think I spoke of this in earlier writings, but I have to say it again, cause I miss it soooo much. So I think I might get together with the City of Cornwall and start a Competitive Synchro Club. The club we have is not competitive, so now I have to get my creative juices starting. How do I start a club, who do I contact, when do i contact the government, can I get a grant for equipment and manuals. Will I be able to get the pool time? Who will supervise? I am going to need coaches? Where does it all end, and how do I start.

This is Synchronized swimming...

SYNCHRONIZED SWIMMING = BETTER LUNG CAPACITY

BETTER LUNG CAPACITY = EASY BREATHING

TIME TO ENJOY ONE OF MY FAVOURITE SPORTS!

Thank you for sharing in my interest in Swimming, especially Synchronized Swimming, it's not shown enough, I can only hope to put it on the map here in little ol' Cornwall.

Much Love always

Ali

Pin Up and away...

2011-08-16T14:40:00.000-04:00

As I sit here listening to Katy Perry I can only think of Pin Up Girls. No I am not "Gay" and I have no problems with that. But I think Pin up girls from the 50's, the drawn ones, are some of the best images I have ever seen.

For instance, the used to use the pin up girl to capture the beauty in a woman's body, they used pin=ups to encourage young men to join the army.Navy/Air Force. some of the best images come from that old time vintage art. Check this out, it's my facebook profile picture right now.

If I were a young man in the early prime of my life, at a tender age of 18, and want to find out who i really was, I would join the sir force on this photo alone. And there are tones of them lurking around the internet. They also used pin up girls to advertise. Not all women look like June Cleaver. Here is another one looking towards the military aspect of life.

Call me crazy but this is the kind of art I love. So if ever you are wondering what to get me, get me something tasteful like these. Probably why I have a fascination with Marilyn Monroe or Norma Jean. This is one of my favourites of Marilyn Monore.

Marilyn, as true as it get's. She's beautiful, smart and fun. Not to mention beautiful. Andre De Dienes was the first to make Marilyn a household image. Taking her under his photographic wing when she was 18, and still Norma Jean, he saw potential, and look where it got her. Fame, fortune and then a sad death.

I will love Marilyn always, her style, her smile, and her photogenic presence is something I will cherish.

I hope everyone can see what I see in Marilyn and not just a sex symbol.

Pin-Up and away.

Cheers
Ali

My Reverse Bucket List...

2011-08-07T00:49:00.000-04:00

As I sat on my ass after the gym, watching Shark Week on Discovery, i have decided to make a reverse bucket list. The things I would love to do before I die, but can't. It's very simple actually, you think of all the wonderful adventurous things that you know you won't do and write them down. Let me show you.

First things first...

#1 - SKYDIVING

#2 - SCUBA DIVING

#3 - CHASE A TORNADO

#4 - VIP SUITE AT A MONTREAL CANADIANS "HABS" GAME

#5 - MEET LANCE ARMSTRONG

If there are things on the list that are missing, one day I will update it.

Who knows I might just meet my mentor, that being Lance, and maybe we'll go sky diving, yeah right!

Or maybe, just maybe, I'll bike in Texas, visit Pat & Cara on their home turf, and bike a few hundred miles with Lance in tow. Wouldn't that be awesome.

Yeah, it totally would be awesome!

I LOVE LANCEARMSTRONG!!!!

Thanks for listening!

Love Love Love

Ali

LIVESTRONG

WHAT A WEEKEND!

2011-07-18T19:34:00.000-04:00

I had the best weekend I could ever think of. You see my home town, Cornwall, Ontario have this event every year called Lift-Off. It's about family, friends, fun and Hot air Balloons. Oh did I mention the entertainment. Fantastical.

Each year this event bring in tourism to our little town, and whole lotta fun to be had. There's a fair set up in the park, and the concerts, oh the concerts are amazing. The one truly inspirational thing about this festival, is that it speaks to me on a different level.

Before I had my transplant, or after rather, I would tell people that the way I felt when I could breath was like a hot air balloon. At first it's all crumpled and stuck together in a bag that won't allow it to open up. When a balloon is set free, and able to open it's cavity it brings beauty and an amazing reflection of what it feels like to be able to breath.

Kinsmen Lift-Off Balloon Festival

To be able to breath freely is like watching a Loon swim, floating along the top of a water passage. Beautiful.

So see the mechanics of a Hot air balloon is like looking at the mechanics of our breathing system. Tubes, holes and passages we could never imagine living without.

This year event was a huge success, I can only hope to see some of my friends out there next year.

Cheers and love with arms wide open. Breathing easy and loving every minute of it.

LOVE LOVE LOVE
Ali

Have You Ever?

2011-07-08T17:04:00.001-04:00

Welcome back to another story of what I have ever known to be, or learned.

HAVE YOU EVER...

Hear of a artist by the name of Alex Pangman? NO! Well let me introduce you to this soulful jazz singer who bring a whole new meaning to Breathing Easy. She is a beautiful 33 year old woman, with the voice of Ella Fitzgerald. I would love to hear her sing some Gershwin. He voice is hypnotic to say the least.

She was born with CF, and had a double lung transplant in 2008. Same year as Ashley and myself. She is a gorgeous red head with the big curls to match her big voice. She is stunning and i can't get enough of her, I just cannot.

Alex Pangman

"CFers are tenacious fighters. We live life to the fullest and when we hit a roadblock,

we find a way to circumvent it and do other life-enriching things.

We also tend to live in the moment and squeeze the good out of every day.

That helps not being crushed by the chroni-ness of it (CF)"

~Alex Pangman

(a Quote from an article in the Kin Canada magazine.)

To read the full article, please go to the following link.

http://www.flipdocs.com/showbook.aspx?ID=10004167_117664 page 32

her website is : http://www.alexpangman.com

I suggest you get into this gal. Her music so delightful and enlightening. Sounds of Judy Garland can be heard in this big voice.

You can buy her albums at amazon.ca so for the life of all of us. GO & CHECK IT OUT.

Cheers

Ali

What's New, what's hot!

2011-06-26T20:45:00.000-04:00

Hey Friends,

I have been a bad Blogger. My last blog was in April, and it's now close to the end of June. I admit, I am a little upset with myself for not allowing my mind to relax and get things done, but you have to believe me when I say I haven't even had time to finish a book that I started a few months ago. In fact I think it was the title of my last blog.

So you ask me what's new, well I haven't had much happen that has been of interest to anyone. In fact it's not even of interest to me. I work with my father and my husband, and that keeps me entertained during the week, and the weekends have been pretty quiet.
I have, however, been experiencing some swollen hands and feet, that no one seems to know what to do about. Sleep with your feet elevated, OK I do that, still swollen. What does Toronto say, nothing, just to drink more water. YUCK! My knuckles are hurting, maybe I am getting arthritis or something, that would totally suck.

Not to mention the heat, the heat sucks, that can be a contributing factor to the swelling, but Toronto doesn't know or cannot say for sure. Why should I call them with something that is bothering me, if my new nurse, doesn't get back to me the same day, and doesn't explain anything to me either. I do not like the new Transplant Coordinator nurse I have. I WANT DEBBIE BACK. She explained everything I never had to worry about waiting a few days before I hear back from her. Why do they change, when you get used to one person, it should always be the same person. Pointe Final.

A picture to relax be, because my brain is over powered right now....

Nastia Liukin

Ok, now to log off, and get some real rest. No more computer, no more lights, just the sound of the wind in the trees, the night bugs and laying next to my hubby. That is all i need.

LOVE LOVE LOVE to you all
Ali

Long Walk to Freedom

2011-04-03T21:45:00.000-04:00

Long walk to freedom... I have started it, and it's going to take me aq while to read it. I am on chapter 5 and already I cannot put this book down. I have two other books by Jodi picoult waiting in the wings to read and I still cannot motivate myself to get on the band wagon and just dive into it.

Maybe it's the distractions that I find myself mixing with, like Golf games on TV, or movies that I want to watch or maybe it's just because I cannot sit still for longer than an hour, unless that part of the book is really interesting.

Well okay maybe it's a little bit of everything all rolled into one... I'm a a bitch i'm a lover , I'm a child... see what mean. Deviating from the real reason I am here.

Speaking of Jodi picoult above, I cannot ehlp but realize how much I love her work.

Some of her books are less than to be desired, but hey, who am I to complain, she makes more money that i do, and there were really only 1 of her books that didn't interest me. I won't say wich on, because I know others love that book. Her newest one came out on March 1st, and you can bet I was in line for it. Well, there was no line up, but I got mysefl a fresh copy right out of the box. No one had touched it but the guy who printed, and boxed the book, then the girl that took it out of the box. handed down to be in my hands, the fourth hand that ever touched it. What a great feeling.

This will be my book reading entry, and alas, I had lied to you all last pposting, there was a mishap with the number of postings I have. This is actually my 100th posting, but no one really needs to know that, and those who read this will know now that I have lied to them about the number of postings I have. I am truly sorry for that.

Well, enough about the books i have read, I will post somethign a litle more interesting tomorrow, as I have got to get some rest.

Loveing you all very much.

Yours always

Ali

My 100th Post!!!!

2011-02-25T21:20:00.000-05:00

Ladies & Gentlemen

Madames & Monsieur's

Let me introduce you to BLOG # 100.

Today I want to discuss the reason I am alive today, and the reasons I fight for Cystic Fibrosis.

REASON #1 - My Donor

Today i am able to wake up, take deep breaths and thank God for allowing my this beautiful vision I see everyday. It may be cold, and it may get wet, but it's snow. Without my donor, I wouldn't looking out my window and the white blanket of snow that covers the lawn of my apartment building. The flashing blue light of the plow rushes by and crates a wave of snow over the sides of the road. Without my donor and their family, I wouldn't be sitting here typing this from my home computer. I am forever in debt to the harsh decision they had to make that faithful day in February 2009. Not only was it family day in Ontario for the first time, but i amble to share my family with my donor family.


Freedom of Flight, Breathing easy & flying high

WHY I FIGHT FOR CF - Friends & Family

I don't fight Cf just for me anymore, I never really have. I have been fighting this battle for everyone I know who has CF, who has conquered the transplant and for those who are in the phase of becoming familiar with the transplant process. Cystic fibrosis, is who i am, it's what I stand for. My friends and Family are the reason I fight so hard. If it weren't for them, I wouldn't be who I am today, they mold me into this great person that i have become.

When I get the chance to express my emotions or feeling for my Fibros and Cysters, I like to tell them it's not a hindrance to have CF, it's a blessing, what you make of it, is who you are. Cystic Fibrosis has made me strong, positive and knowledgeable with the illness i have come to call family. If a little girl i know can fight Leukemia at age 2 and three I think at age 31 I can fight just as hard. If only the had Make a Wish for adults, that would be awesome. I would want Box sears at a HABS game playing the leafs, with a pass to visit with both teams before or after the game. Drink would be on the house, I would invite my family a closest friends. That has got to be a bit cheaper then a trip for 4 to Disney right?

But i do fight everyday I fight. Today i have started an IV for Solumedrole again, that same dosage that I was given in November when I had Grade 2 rejection. I don't have GR2, but my PFT's are low, and that concerns them a little bit. So I fight, I fight so I can keep seeing the people that mean the world to me, the ones who look up to me, who call me Yaya, and Aunt Alison. My family needs me, to be strong, i need them to be strong, so we are all strong together no matter what happens.

My passion for a cure drives me to fight harder. When i see my friends who have gone through transplant like Eva, Ashley, Sean who went in this morning, Amanda, Tim, and maybe Marc soon. I want them to see, through me, that it can be done. Amanda and Tim where there when I needed them, and I thank them in my prayers every night. Thank you guys so much for your help when i went through my TX, it made it easier to see what's around the corner. I can only hope that my experience will help others who have to go through the transplant process.

So in the meantime, i can hope that you will keep praying for me and all of us who suffer and live with CF on a daily basis. CF isn't easy, it never will be until a cure is found. Help fight the fight of CF, and make your donation today. You never know who you will be helping, it may even be one of your own children one day.

Much love and respect and prayers to you all

Ali

Great Strides 2011 --> this is from last year, but the point is just the same!

Thanks

Ali

Anniversaries & More

2011-02-15T14:01:00.000-05:00

Well, it's bee too long since I have updates this.

So I hope to be vigilant in this, and expressing my emotions an thoughts with every turn I make.

It was a year aog on February 12th, that the Vancouver Winter olympics started and the Olympic Family lost a friend on the very first day. To The Georgian Luger, Nodar Kumaritashvili we salut you!

Nodar Kumaritashvili

It was an experience, volunteering in Vancouver, that i will in no certain future forget. The friends I made, the people I met, and the amount of fun we had. I will cherish those memories forever.

*** OTHER NEWS ***

Just went to Toronto for my 2year assessment, you guessed it, it has already been 2 years. Well, two years tomorrow that is. I cannot believe it. Since my Grade 2 rejection episode I have been waiting and hoping for the news that is has all be cleared, and thank the Grand Master up above, it has.

I cannot believe that someone I don't know is now a part of me, and who I am. I admit, I have a short memory now, and tend to forget things, but I would rather that, then to have the latter. Which we will not discuss here now or ever.

So tomorrow I have planned a 2 year assessment gathering, to thank all my freinds and family for their well wishes and support, it is something less than a miracle that I can do this and feel confident that I will not cry. Ok, so that's not entirely true, because i am a blubbering boob when it comes to expressing my gratitiude to people.

So, my 2 year assessment blood work shows that I have great blood, everything is where it should be. But my bloodpressure is high 167/103 and I have a fast heart rate and high cholesterol. Lucky me, more meds. I am not lloking forward to the reaction or side effects of these new meds.

No results from my Bronch yet, hopefully today and when that time comes, you will be one of the first people to know.

*** SOMETHING COOL ***

My buddy Ronnie and his wife Mandi are in the process of trying for a baby. Ronnie has CF, and they had to do IVF in order to use "Ronnie's" specimen. It's a great stroy, check it out at "Run Sick Boy Run". Ronnie and Mandi we are all praying and sending you good vibes, Baby vibes. Love you guys.

Ronnie & Mandi

Well this is all for now.

See you NEXT TIME!!
Ali

P.S. Sending love to my freind Eva, who passed away March 27th. Love you Eva!

Eva Markvoort

So much to say... so little time to say it in...

2011-01-11T15:36:00.001-05:00

Well time for some updates...

On December 10th, I had my port removed. It was a painful process. It isn't supposed to be, at all... but like always I have to be different.

Because I had Fibrin tissue on the end of my catheter that my port had, it was time to remove it. none of knew that I also had Scar tissue built up around the catheter. Yeah tell me about it. So as the Doctor is having a difficult tie cutting the PORT from my body, due to scar tissue build up in the holes where the suture the port in, had grown all inside. So as he's snipping away at the scar tissue there, he didn't know that the catheter would prove to be a hassle.

He had cut the tubing from the port to access it better and as he slowly tugged on the line,it wasn't moving. But it was very painful. I could feel the pain in my neck, my back and where the scar tissue had built up. not pleasant. My Dr actually has to give me an IV of relaxants and pain killers to get it out.

One it came out, I had the privilege of seeing exactly what was causing the problem. That little bastard thought he wasn't going anywhere, he was happy and content in his warm home. Don't blame him in the least, ha ha. It was such a rare occurrence that my Dr. Wanted to keep it to study it some more, and find out how it happened.

He said "I have never seen this before, can I keep it? I want to do a study on it"

How can I say no to that. I will once again be a part of medical science. WOOHOO

I can still feel the scar tissue where the port had been. It's so surreal, but it happened. The just re cut the scar from the when they put it in, and it barely shows. Kind of like my transplant scar, that hardly shows also.

I know i haven't been very good at updating this blog. BUT this year things will be a little different.

I went last week, the 4th of January, for a follow-up Bronch to see ow the grade 2 rejection is fairing out. I still have not hear anything, it's only been a week. I am anxious as I would love to know what is going on inside my chest. I don't feel sick, I don't have anything to worry about. NO NEWS S GOOD NEWS, unless you are on the waiting list.

Well, that's all I have right now, I'll let you all know when I know about the Bronch results.

Cheers and love
Ali

Ottawa today with Memere!

2010-12-01T23:19:00.000-05:00

Well, today i headed off to Ottawa, as per Toronto's request for PFT and blood work, and I visited with one of my favorite Dr.s, whom i hadn't seen since my transplant. And the results of my PFT are as follows...

FVC: 2.73 OR 70%

FEV1: 2.08 OR 62%

My doctors aren't worried about it, as i have had the same results over the last few PFT's that i have done. I will have to call Easy call and let them know what is happening, but I don't think they will be too disappointed. Around thanksgiving last year, I had a positive CMV result, that landed me in the hospital with IV treatment for two weeks, on Gancyclovire. So it wouldn't surprise me if it crept up again to see me, and check out the new digs again. Well like Shakespeare said in one of his plays, "Out damn spot" and so it will be.

A little bit about CMV, I know I might have posted this a while back, but to refresh everyone's memory let me tell you a little more about it, from the people online at the some medical place somewhere in the world.

CMV - immunocompromised host

URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/000663.htm

Cytomegalovirus (CMV) is a member of a group of herpes-type viruses that can cause disease in different parts of the body in people. This article discusses CMV in people with weakened immune systems.

Causes

Most humans are exposed to CMV in their lifetime, but typically only individuals with weakened immune systems become ill from CMV infection. Usually, CMV produces no symptoms. However, serious CMV infections can occur in people with weakened immune systems due to organ transplants, or medicines that suppress the immune system.
A CMV infection may affect different parts of the body. Infections include:

CMV esophagitis (infection of the esophagus)
CMV gastroenteritis (infection of the stomach or intestines)
CMV retinitis (infection of the eye)
CMV pneumonia (infection of the lung)
Mononucleosis-like illness

Once a person becomes infected, the virus remains alive, but usually dormant, within that person's body for life. Rarely does it cause recurrent disease, unless the person's immune system is suppressed due to medication or disease. Therefore, for most people, CMV infection is not a serious problem.

Symptoms

The symptoms of CMV infection are similar to those of mononucleosis. In fact, in a small percentage of people with mononucleosis, CMV is the cause. The symptoms of primary CMV infection are:

Fatigue
General discomfort, uneasiness, or ill feeling (malaise)
Joint stiffness
Loss of appetite
Muscle aches or joint pain
Night sweats
Prolonged fever
Sore throat
Swelling of the lymph nodes
Weakness
Weight loss

In immunocompromised people, CMV can attack specific organs. The major symptoms of these organ-specific infections are:

Lung:

Pneumonia with impaired oxygen uptake (hypoxia)

Gastrointestinal:

Diarrhea
Swallowing difficulties or pain
Ulcerations with bleeding

Exams and Tests

Blood and urine tests can detect and measure substances specific to CMV. A tissue biopsy is often required to be certain of the diagnosis (except in the eye or nervous system).

Treatment

Several antiviral medications are available to treat CMV. These medicines require close monitoring for side effects. Antiviral drugs can help stop the virus from copying itself within the body. However, the drugs do not eliminate the virus from the body.

Outlook (Prognosis)

CMV infection in an immunocompromised person can be life threatening. The severity of the disease depends on the strength of the person's immune system. Research has shown that people who have had a bone marrow transplant have the highest mortality risk.

Any immunocompromised person, whether an HIV patient, organ transplant recipient, bone marrow transplant recipient, or other, should seek medical advice if any signs of infection occur.

Possible Complications

Blindness
Kidney impairment (from medications used to treat the condition)
Liver damage
Low white blood cell count (from medications used to treat the condition)
Meningitis
Pneumonia

Alternative Names

Cytomegalovirus - immunocompromised host

This will always be a possibility as my donor tested positive for CMV and I was negative. I have had a bought with it last year and it can come back, and if it does, i will attack the son of a bitch with everything i have. Take that CMV, now let's see who is in charge.

When my results come back, I will keep you all informed as to what they say. No more messing around, things like this need to be expressed and shared within the community at large. Transplant is not a cure, it's a temporary solution to an ongoing problem in the CF community.

Let's fight to make CF stand for Cure found.

Lot's of love and prayer

Ali

1989-2000 Holiday Barbies

2010-12-01T16:57:00.001-05:00

So ladies and gents, i am officially cleaning house.

I have the 1989 - 2000 collection of Holiday Barbies still in the box, all but 1989 when I was young and didn't realize I wasn't supposed to play with them. But the years after that one are still in their original boxes, with the ornaments they came with. Everything about them is perfects. They have been in a none smoking home, and in the closet for a long time, so no colours have faded or anything.

Why am I selling them you ask...

Well to be honest, I don't collect them anymore, I don't and won't have and children to pass them along to. I am hoping they will find a good home in one of my readers who cam appreciate that Barbie is now officially old. Okay, okay so 50 or is it 60 isn't old, but it is a lifetime of collections.

I need to rid myself of old baggage and make room for more memories of new.

Here are some pictures of my dolls, well they arent' my dolls these are images from the web that I am using cause mine are pretty much exactly the same.

And here they are...

For some reason I think I might have more than this in my closet, but these are some images of the dolls I do have.

When I get home, I am away at the moment, I will take my own pictures of these dolls and have them up.

Happy holidays everyone.

See you soon

Ali

FDJ - "WOMEN WHO SHAPE OUR LIVES” : REAL WOMEN MODEL CONTEST

2010-11-29T12:13:00.000-05:00

Hey Friends,

Vote for me, I want to win!

Ali

FDJ - "WOMEN WHO SHAPE OUR LIVES” : REAL WOMEN MODEL CONTEST:

"FDJ - 'WOMEN WHO SHAPE OUR LIVES” : REAL WOMEN MODEL CONTEST"

Well I am in Grade 2!

2010-11-13T22:27:00.003-05:00

As of the 10th of November, I had been classsified a Grade 2 Rejection patient. Luckily for my Transplant friend or BFF Ashley, her 18 month assessment went a little smoother than mine. that's okay Ash, because my lungs will kick your lungs ass on the next bronch. lol

Grade 2 Rejection is cleared up mostly by taking IV medication for three days, which i took. I was on IV Solumedrol 1 a day for an hour, for three days. All went well, this in turn made me very tired, halfway through the treatment i would be slouching on my couch just waiting for the last 30 minutes to infuse so i can go to sleep, and just let nature take it's course. Because they couldn't use my port, with the tissue blockage and all, I was forced to get an IV in my arm, that actually lasted more than a day. Thank god for that.

Solumedrol... what is it you ask, here is the scientific definition of SOLUMEDROL:

Solu-Medrol Solution is used for:

Solu-Medrol Solution is a corticosteroid. It works by modifying the body's immune response to various conditions and decreasing inflammation.

Important safety information:

Solu-Medrol Solution may lower the ability of your body to fight infection. Avoid contact with people who have colds or infections. Tell your doctor if you notice signs of infection like fever, sore throat, rash, or chills.
If you have not had chickenpox, shingles, or measles, avoid contact with anyone who does.
Tell your doctor or dentist that you take Solu-Medrol Solution before you receive any medical or dental care, emergency care, or surgery.
Diabetes patients - Solu-Medrol Solution may affect your blood sugar. Check blood sugar levels closely. Ask your doctor before you change the dose of your diabetes medicine.
Talk with your doctor before you receive any vaccine while you are using Solu-Medrol Solution.
Solu-Medrol Solution has benzyl alcohol in it. Do not use it in NEWBORNS or INFANTS. It may cause serious and sometimes fatal nervous system problems and other side effects.
Lab tests, including adrenal function, blood pressure monitoring, and eye exams, may be performed while you use Solu-Medrol Solution. These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.
Solu-Medrol Solution may interfere with skin allergy tests. If you are scheduled for a skin test, talk to your doctor. You may need to stop taking Solu-Medrol Solution for a few days before the tests.
Corticosteroids may affect growth rate in CHILDREN and teenagers in some cases. They may need regular growth checks while they use Solu-Medrol Solution.
Solu-Medrol Solution should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed.

Possible side effects of Solu-Medrol Solution:

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:

Dizziness; facial flushing; headache; increased sweating; mild nausea; pain, swelling, or redness at the injection site; stomach pain or bloating; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody, black, or tarry stools; changes in body fat; changes in menstrual period; chest pain; fainting; fever, chills, or sore throat; increased hunger, thirst, or urination; mental or mood changes (eg, depression, personality or behavioral changes); muscle pain, weakness, or wasting; seizures; severe nausea or vomiting; shortness of breath; slow, fast, or irregular heartbeat; slow wound healing; stomach pain; sudden, severe dizziness or headache; swelling of the feet or legs; tendon, bone, or joint pain; thinning or discoloration of the skin; unusual bruising or bleeding; unusual skin sensation; unusual weight gain; vision changes or other eye problems; vomit that looks like coffee grounds.

So this is what I dealt with for three days. Yeah, fun!

I had gone to my Dr's in Toronto about 2 months after my 18 month assessment, and they had told me that my results came back from my Bronch showing Grade two rejection, this was how they treated it. I have been taken off Cyclosporin and put on PROGRAF or Takralimus witch is stronger Anti rejection medication.

Here is the definition of that Medication:

Tacrolimus Capsules is used for:

Preventing organ rejection in patients following liver, kidney, or heart transplant. It may be used along with other medicines. It may also be used for other conditions as determined by your doctor.

Tacrolimus Capsules is an immunosuppressant. It blocks the action of certain blood cells (eg, T lymphocytes) that can cause the body to reject the transplanted organ

How to use Tacrolimus Capsules:

Use Tacrolimus Capsules as directed by your doctor. Check the label on the medicine for exact dosing instructions.

You may take Tacrolimus Capsules by mouth on an empty stomach or with food. However, you must take it the same way each time for it to work best. If you take Tacrolimus Capsules on an empty stomach, always take it on an empty stomach. If you take it with food, always take it with food.
Grapefruit and grapefruit juice may increase the risk of side effects from Tacrolimus Capsules. Talk to your doctor before including grapefruit or grapefruit juice in your diet while taking Tacrolimus Capsules.
Tacrolimus Capsules works best if it is taken at the same time each day.
Continue to take Tacrolimus Capsules even if you feel well. Do not miss any doses.
If you miss a dose of Tacrolimus Capsules, contact your doctor right away.

Important safety information:

Tacrolimus Capsules may cause drowsiness and dizziness. These effects may be worse if you take it with alcohol or certain medicines. Use Tacrolimus Capsules with caution. Do not drive or perform other possibly unsafe tasks until you know how you react to it.
Do not change your dose of Tacrolimus Capsules without first checking with your doctor.
Tacrolimus Capsules may increase your risk for developing skin cancer. Avoid using sunlamps or tanning booths. Limit your exposure to the sun. Use a sunscreen or wear protective clothing if you must be outside for more than a short time.
Check with your doctor before you drink alcohol while you are taking Tacrolimus Capsules.
Check with your doctor before you use a salt substitute or a product that has potassium in it.
Tacrolimus Capsules may lower the ability of your body to fight infection. Avoid contact with people who have colds or infections. Tell your doctor if you notice signs of infection like fever, sore throat, rash, or chills.
Tacrolimus Capsules may increase the risk of certain infections, especially inactive viral infections, including BK virus-associated nephropathy and JC virus-associated progressive multifocal leukoencephalopathy (PML). These infections can lead to serious, sometimes fatal, outcomes. Contact your doctor right away if you experience clumsiness, weakness on one side of the body, trouble speaking (eg, word-finding difficulty, slurred speech), or loss of vision.
Do not receive a live vaccine (eg, measles, mumps) while you are taking Tacrolimus Capsules. Talk with your doctor before you receive any vaccine.
Patients who take Tacrolimus Capsules after an organ transplant may have an increased risk for developing high blood sugar or diabetes. The risk is higher among black and Hispanic patients after a kidney transplant. High blood sugar may make you feel confused, drowsy, or thirsty. It can also make your flush, breathe faster, or have a fruit-like breath odor. If these symptoms occur, tell your doctor right away.
Lab tests, including blood counts, blood potassium and glucose levels, kidney function, heart function, and blood pressure may be performed while you use Tacrolimus Capsules. These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.
Caution is advised when using Tacrolimus Capsules in CHILDREN; they may be more sensitive to its effects, especially lymphoma.

Possible side effects of Tacrolimus Capsules:

All medicines cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:

Back pain; constipation; diarrhea; dizziness; headache; joint pain; loss of appetite; nausea; stomach pain or upset; trouble sleeping; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; dark urine; decreased coordination; diabetes (frequent urination, increased thirst or hunger); fast or irregular heartbeat; fever, chills, or sore throat; mental or mood changes (eg, anxiety, confusion); one-sided weakness; painful urination or changes in the amount of urine; red, swollen, blistered, or peeling skin; seizures; severe or persistent dizziness or headache; shortness of breath; swelling of the hands, feet, or legs; tingling or numbness in the hands or feet; tremor; trouble speaking; unusual bruising or bleeding; unusual lumps or skin lesions; unusual weakness or tiredness; vision changes; yellowing of skin or eyes.

Some more things to keep in mind.

Hey the more you know, the better you can understand what your body is going through. I think it's good to know as much as you can about what is going on in your body, so you can better appreciate the gift of life, and love you have.

So i will keep you all posted as to what is happening in my world. The world of Lung Transplantation. I am not afraid, so please do not be afraid for me. Keep me in your prayers, and thoughts, I will promise you that i will fight the fight to saty with you all. That is my main focus. Stay healthy and LIVESTRONG!

Love you all

Ali

News, news, news!!! All new!

2010-11-12T23:03:00.000-05:00

Well this week was a whirl wind of fear, disappointment and not understanding how science and nature work.

On Tuesday November 9th, i got a call from my nurse Coordinator in Toronto. she's the one who leaves us Easy Call messages to respond to. Only problem is that this call wasn't VIA easy call, it was a direct call from the Transplant unit to my husbands Cell phone, as that was the number they have on file for important phone calls that can't be made or left on a message.

This stated when i had mu bronch done in August, and everything was well. I got a Easy call message stating the I had Grade one rejection, nothing to worry about they just increased my Cyslosporine to 175 in the morning and at night, and i was to follow up with another bronch in a few weeks. Well that day was November 2nd 2010.

So off to Toronto i headed for more testing. I know this may sound weird and kind of out of the ordinary. But i honestly love getting Bronch's done, maybe it's got something to do with the fact that I don't drink, and it's my high of sorts. i like that fact that Medicine can do these things to detect the things that need to be done, and fixed.

So I thought everything was going great until i got the results back form that Bronch within a week. When they results come back that fast there must be something up. And of course there was.

I was diagnosed with Grade 2 rejection. What happens in this case is that the medication i on, isn't working well, and they request vigorous IV treatment with high potency Steroids to bet things rolling in the right direction. I was say when I first heard about it, I cried, my husband was scared a is was. I managed to survive the night by being as positive as possible and making the best of something i cannot control.

Life hands you lemons and you make lemonade, or God hands you something, and you educate everyone, and never let them see you cry, never let them see you weak, because when you get weak, the worst always happens. Positive thoughts lead to positive reactions. And that my friends is a fact.

So The meds started on Wednesday afternoon, and they said the side effects would be bloating, or water retention, swelling of the hands and feet, excessive appetite, and that i would be wired for sound. Well here are my reactions... Tiredness all the time, swollen hands and feet, and that's pretty much it. I was expecting the worse, and got the best. In fact I think my water retention went way down in the meantime. I also called and asked if i could have this stuff instead of Prednisone... not such luck.

So to day is Friday i have had my last dose of meds, and I don''t really feel any different. I wasn't able to use my port as I have Fibrin Tissue on the end of it, so the gravity pole wasn't allowing the medication to go through. So for the first time in as many years, something like 6 or 7 i had to have a Saline lock put in, no PICC line no use of my port, I went old fashioned, and it lasted the full three days that we needed it to. I have a lot of dishes to catch up on. lol

So no one has to worry things are going great. I am a little short of breath, but i guess that's normal. I will keep you more posted on what is happening with me, as I have not been very good at it, at all. For that i truly apologize.

Love you all and thank you for your prayers and support.

Kisses and love

Ali

To what do i owe the pleaseure.

2010-10-05T23:25:00.000-04:00

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

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

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

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

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

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

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

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

Sending the love
Ali

CBC News - Health - Bob Nesbitt talks about the surgery that saved his life

2010-10-02T20:11:00.000-04:00

CBC News - Health - Bob Nesbitt talks about the surgery that saved his life

European Adventures

2010-09-24T09:47:00.000-04:00

So yesterday was my fathers birthday, and he spent it drinking a bottle of champagne with my mom in Erope, actually, if I am not mistaken they are in Portugal. Wow, that is some birthday. This whole thing started about 2 years ago when my dad began hoarding his earnings, to create a Europe account. 2 years later, he's gone on a golfing trip with my husband and all his friends from growing up, my dad freinds. Mom's birthday came around while he was away, and it was my job to make it memorable. Boy sis i make it memorable. I had wraped the envelope about their trip in a box, covered in tape, then bubble wrapped it, then stuck it in another box, and taped it like there was no tomorrow. Then a proceeded to wrap this sucker in Christmas wrapping paper, because that was all I had at the time. While my mother opened her strange but unique gift, the letter my father wrote was proceless. I can't put it up here, as i don't remember it word for word. But my mother called my father a liar. Funny as hell. So as she opened her gift(s) she was looking through the pamphlets and it took about 3 minutes for her to realizr that my father had saved up money to take my mother on a European trip for her birthday. That happens to take place while it's my father's birthday. So romantic. Ahhhh. They started a blog about their adventures, and it's so much fun. I am so proud of them. It's been forever that they have wanted to do something like this, and now they are. I have never been more proud of my parents, for finally doing something for themselves, after doing everything for us, for so long. Well deserved Momma and Paw, well deserved. Love and safe travels. Ali

It's in the words...

2010-09-16T21:03:00.006-04:00

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 in an 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 it 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

BACK IT UP!!!!

2010-09-08T00:47:00.005-04:00

Well hi diddly Ho, Neigborino's.

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

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

Old time photos bring back such fond memories of being a
child, having no worries, and being able to eat what you want when you want. Now, it's all because of anti rejections that you have to learn a whole new way of eating.

Here's another picture of me as a child, here you can really see my little Buddah Belly, oh how I loved it them it was cute... now... not so much.

There I am in my pink overalls, carrying what I think is some kind of stuffed... alien maybe??? Who knows.

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

Time goes by, so slowly, when you listen to Madonna. Change it up listen to Dave Matthews,. I know totally off topic... ANYHOW!!!

According to the pole i had up on my blog last week, 66% of you think I should get my port replaced... well I think i am just going to get it removed, so when I do get sick, which won't be for a long time, I can just get a picc line. Ask Ronnie, they aren't so bad... RIGHT!!!????

Please hold, while I transfer some more documents on to a disc... Your patience is appreciated...

15 minutes later...

Okay, I am back. How eventful. So now i am going to just mention that i am a member of TEAM BOOMER. for those of you who don't know, Boomer Esiason is a former NFL Quarterback, who's some was born with CF, he has since started a foundation to help raise funds to support families and research. Check it out at www.esiason.org. Today in the mail, I got my TEAM BOOMER t-shirts and I am so excited to wear them to the gym. CF all the way baby, CF ALL THE WAY!!!!!!

Well, I just noticed that it's pretty damn late, and I have to work in the morning, i will keep you all posted about my Port when I find out more.

Cheers and pleasant dreams to you all.

With love
Ali

Don't be Scared it's only Grade 1... rejection!

2010-08-31T23:01:00.002-04:00

HOLY SHIT!

Pardon my language, but this just in, I have been called on Easy Call, the system transplant patients use to communicate with their doctors and Nurse Coordinators. I got my Easy Call on Monday August 30th, and the message I got wasn't entirely what I was hoping it would be...

The message was neither scary or exciting. a little nerve wracking,... yes definitely. But I can't imagine that after 6 months I went from minor rejection to an actual classification of rejection. GRADE 1. Now i am not entirely sure what Grade 1 means, but this is what i do know....

1) My meds will not change. I was hoping for a reduction in my Prednisone, which makes me fat, and bloated and just not cool with myself,

2) they will increase the amount of Cyclosporine i will take, which is one of my anti-rejection medications,

3) I have to go back to Toronto for another Bronch in 2 months. So the end of October beginning of November, I get to have another bronch done. WOOHOO!!!!!!

My nurse coordinator, Debbie, called me again toaday to inform me that I am growing Pseudamonas, which is what I was growing before my transplant. This is normal in transplant, as the mucus in your sinus' and in your throat will generate again in the lungs, when you cough, sneeze and so forth.

Pseudomonas aeruginosa is a versatile Gram-negative bacterium that grows in soil, coastal marine habitats, and on plant and animal tissues. People with cystic fibrosis, burn victims, and other patients in intensive care units are particularly at risk of disease resulting from P. aeruginosa infection.

I am not worried or anything, but I won't lie, i am and can be a little scared, that, what happened to Eva, might just happen to me. It will eventually happen, but I can only hope for the best, that i will live long like Bobby, and live life to the fullest.

Keep your prayer lines open, I might need you again at some point. But until then, live long and prosper. Stay thirsty my friends. haha

Love to you all

Ali