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

Saturday, February 28, 2009

The morning that we all dramed about

Well, I was in the hospital waiting for the morning to come. Can you believe that I am actually going to get new lungs. I am still a little dumbfounded. First it was the intensity of being put on the list in the first place, THE LIST THE LIST, on my god, to e on the list was almost as amazing as finding out that I would be expecting, only better. The list is huge, to better understand it, you should know that there are two categories for the level of severity of you lung transplant, level two being the highest, and level one being, it can wait, it's not a big deal right now. Well I was on level two that is how badly I needed this. I didn't feel that sick, no look that sick, but by george I was that sick inside.

So the morning was creeping along, I had called all the people I needed to call, gave then the info they needed, as per the last entry. My most amazing husband Derek, was there to see me, and it was aw though there was nothing special happening. No Butterflies, no jumping beans, nothing. I was just so excited that after only 31 days on list I was going to be breathing in air like I can only image in would feel like to "normal" But even normal now a days, isn't normal.

Mom and Dad made i up in record time, 4 hours I think, maybe even less. Honestly, if i were speeding on the highway at 10 in th evening, I would pill m over. Well, ok maybe I would, but once I found out the reason, I would be the first person to escort them to the hospital, and should it have been a lie, as "Here's your sign. Have a nice day." Slap them with a nice fat speeding violation, lying to the authorities, and an other questionable highway traffic act they have committed, much less search his car, for narcotics or whatever. But we are talking about my Dad, and I won't be pulling him over... yet.

Everyone has finally got to the hospital, Mom, Dad, Derek, Dave, Jim, Erin and Jeff. they all wen to bed, as they were told I would be having surgery at 6am, get some sleep and come back in the morning. Now, I don't remember much about being brought into the Operating Room, I remember, Derek giving me a big kiss and a hug. He grabbed my shoes, m socks, and my clothes as I had to wear the most popular attire of the 21st Century, open back hospital gown, now that is just cruel and unusual punishment. They don't flatter any body, the skinny look even skinnier and the bigger look, well bigger.

They give me my first round of immunity medication, to prepare m body for the meds, and prevention of rejection. I remember being wheeled into the OR, and then told to sit on a table. Well, all this seems fine and dandy until I have to lay down on the stupid thing. It's hard like a rock, cold like Ice burg, and did I mention, not very body friendly. The bed is like a plank of metal, much like the one you see in a morgue on CSI, although they get a little extra width.

Now comes the medication to send you off to lala land. I see Dr. De Perrot, he is my surgeon this morning, met with the anesthesiologist, and he layed my down, and started injecting me with my new friend "Howdy and Doody" as I fall fast asleep I know nothing, hear nothing see nothing. Went in at 6:00, prepped for 2.5 hours, in recovery for maybe 1 hour, and off to ICU.

I remember being brought out of recovery to ICU with my two thumbs up, and of course, no one got a picture of it either. That would have been awesome. I guess you would have had to be there. There are gaps in my story, that I hope get in writing from all my family members from their pint of view, what the look was on the Doctors face when he cam out said the surgery was a success, what he told them in between, if he came out to tell everyone how things are turning out.

I want to know what the first things I said were, or wrote were, what I did that was so cool when I came out. Clearly I couldn't see that for myself, that's for sure.

Well, this is it for now, stay tuned for my unique experience through the eyes of a new found life, friends and bringing a family so close together, I think we may all need a divorce. lol

Tune in for "The Week the ICU came and went"

Kisses
Ali

Thursday, February 26, 2009

Ladis and Gentlemen start you enegines...

As you all I know, I had gotten the page for my new lungs at around 8:30pm on 15h pf February, one month and a day from the day I was listed. I had been staying at St. Mike's for about 3 weeks at that point or was just coming up to thee months. My day started normally, and I was settling into my nightly routine of realty and comedy filled evening. When my nurse poked her head back in to set me up or my antibiotics, it wasn't a surprise, until she told me that, in her so cute Russian accent I would le to think, European somewhere anyhow.

"Miss, Ali we have lungs or yo.u" And i am thinking, are you shitting me, is there, are there, really for me. Holy crap. Just like Ottawa, where the hell do I start. Needless to sat, I called my Cousin Dave, to asl him what time he was coming buy at and If I am not mistaken, that would have been a Sunday because he was out of town at the time. Tod him the story, and naturally like all national new Derek had happened to leave early to get to Jim's place. So i am calling Jim's house frantically, he's not answering, the cell phone we borrowed for this exact moment isn't on. SURPRISE Wilson traits do get passed down into un-blooded family members.

I had only just gotten my pager that Friday, and every time I would hear a helicopter or prop plane come in, I would thin are those for me, si up in bed a little, get some gravol, go back to bed.

But this day, This February day felt different. Not that we expected lungs to come in, but we just felt it was a good day all around. Derek had his best friend Chris there, and they stayed up at Jim Brownell's place, so I might add is one amazing man.

Having not been able t get a hold of Derek, for 10, minutes that felt like an hour, I called my Mom. Here is our conversation verbatim.

Mom: Hello
Al: Uou have to get here now...
M: Why?
A: they're here...
m" Holy shit, come on.
a: Dead serious, I am waiting for the medics to get here..
M: Okay we're my leaving now."

CALL ENDS

Then the phone rings again, and it's Derek, I told him we've lungs baby, get in a cab, and meet us a Toronto general 2nd floor I thin it was, and tell who you are and they'll direct you where to go. I knew he was misty eyed, heck wouldn't you be. We said out I love you;s, made sure that everything we have ever done together, is something we have treasures for our entire lives.

CALL ENDS

Phone rings again, I am on the gurney this time, it's Dad.

D: Hay Girlie, so what's happening?"
A:"Everything is taken care of here, The nurses will pack up my stuff, and I have to go. So just,go to TGH 2nd floor, and they'll tell you were I am."
D: O Kay so what's going on, Dad, I can't talk right now, I have to go, I am on the gurney and the Ambulance is waiting. Bye, love you"

Short sweet to the point, then from the there the phone calls went calling out to everyone.

As they wheeled me away in the gurney I can see all the CF faces poling outside their door, wishing that call could have been there. I went guns a blazing, fist pumps in the air, Rocky Style and the chant my sister Erin and I started doing when I was tires all the time.

WHAT DO WANT
NEW LUNGS
WHEN DO WE WANT THEM
NOW!!!!

The nurses were all crying, it's like watching her baby take it's fist steps into life.

Derek and Chris Showed up first, then Dave an Jim, them Mom & Dad and then a few hours later Erin & Jeff showed up. All we can do now is wait. Get me comfortable in a gown and long white tight stockings, I felt so sexy! lol

The surgery is set for Monday Morning at 6am. When I have access tot he computer next, Ill let you know what happens...

LOve love lov

Special Thanks to the following People for visiting me at St. Mike's

My most handsome and wonderful husband Derek.
All my Nurses & Doctors (You all know who are not on the list so don't mention it.)
MAyor Bob Kilger
Jim Brownell, MPP
Craig Carter-Edwards
Erin
Jeff
Memere
Shawna
Momma & Paw
Chris, Jill and the Girls
Traci Trottier
Jim & Kat
Dave\
Chris Watt


All my blog messages, although I can't read them, there is only one computer for each floor, I think I have been here long enough.

Love & Kisses

Monday, February 9, 2009

What's up with you...

It's another day here in the big city, and all I have to report is this...

I am still waiting for lungs...
I still hate big cities...
I still miss my husband immensely...
I miss my sisters...
I miss my parents...
I miss my Memere...

I listen to my wedding song every night before I go to bed, and think about all the wonderful things that happened on that day. It was a day where all the people who mean the world to me, all in one room. Even though my Pepere and Uncle Theo weren't there physically, I know they were there in spirit, because I can feel them with me right now also.

Anyone who know me, knows how important family is to me. Friends are important, but it's your family who is there for you no, matter what the situation is. And boy do I miss them. I can't really complain about my stay here anymore. Dr. Doom doesn't come around here, my cousins Dave and Jim come by on a daily basis, to keep me sane, I talk to my parents at least 2 times a day, Derek, oh the love of my life, I talk to him a bunch of times throughout the day, although not nearly enough in my mind.

I want to send out positive thoughts and prayers to my friend Cara, who has been a little down in the last few days, health wise and emotionally. But I love you Cara, and P will be home sooner than you think, safe and sound. From what I understand, Obama is bringing them home as soon as possible, not to mention his tour is almost finished.

Well, tonight is going to be a quiet night, I am sending my love to my Momma and Paw, to my Meme and Sista's, and I can't forget to mention little Paris, my K9 sister. Love to my brother Chris and his ladies, Jill, Morgan, Gracie, and Kyra, along with their K9 counterparts, Farley, Lily and Miss Denine. Doug and Roxanne, hope to talk to you guys soon, I miss our lunches Rox, I eat Celery sticks and carrots and think of you. I miss every single one of you.

Much love and kisses to you all,
Ali

Sunday, February 1, 2009

Toronto or Bust.

Well, it's almost been a week here in the big city.

Most of you know the story about my black book with doctors. Well after the second day I have another one added to my list. Oh don't start with me people, it's nothing I did this time, it's all about bedside manner, and whether or not I want to talk to the individual.

I admit I am a little overwhelmed, OK a lot overwhelmed. A lot has happened while I was here. It's a big city, and I am still trying to get used to the way things are run here. New Clinic, new Doctors, new nurses, new hospital, new everything.

When I am in a new place, I like to be treated with a little bit of respect and competency. But when you are introduced to someone, who thinks that you are a liar, and that what you are telling them isn't what they heard, you kin of feel like everything you were told is a bold faced lie.

When I first was admitted in Ottawa, the Doctor, Ena, my Mother and myself were under the impression that when I got a bed in Toronto, I would be here until I got new lungs, well apparently that's not the case. They want me here, and they want me to leave. I can't go back to Cornwall, but I can't go to Ottawa either. They treat people here with the intention of going home.

I clearly recall the conversation with the Doctor, as do the rest of the people who were in the meeting, and there were 6 of us, so how can 6 people hear the same things, when they weren't told that in the first place.

I am getting off topic, anyhow... I was told otherwise rather quickly when I got to Toronto. They want to get me somewhat healthy to live in the outside world, and then get transplant, and so on. The Doctor who I will call "DOOM" was not very heart warming, understanding or caring in the least. She told me that, when I am well enough to leave they will discharge me. As I explained to her that the surgeon I was corresponding with on a regular basis, has told us that I will stay in Ottawa until a bed is available in Toronto, and I will remain in hospital until new lungs are available. Doom, said that she was never told this, and that, this isn't how things are done.

Needless to say the next day, she came back into the room with the fellow for the clinic, and made her mark in my black book. She was telling me that the medication I was on was the Homeopathic version of what I should have been on in the first place, so they have increased the doses to see what happens. At this point I am on Meropenum and Pip/Taz by IV, and CIPRO orally. Also that my Iron was low as well as my Hemoglobin. Sure fine, do whatever you need to do.

Now remember I have only been here maybe 12 hours when she is discussing this with me. Doom later then says to me, that I cold be discharged within 2 weeks, and that I need to get my accommodation in gear. Now hold back the train, because we have a stow away. DISCHARGE? WHAT? No one ever siad anything about discharge. Doom then persists to tell me that she spoke with the CF Practitioner and the conversation I had with the Surgeon, The Transplant Coordinator and the Social worker, didn't happen, and no one ever said anything about me staying in the hospital. WELL I NEVER!

According to DOOM in her words "I saw two patients in clinic yesterday, who are far sicker than you are and they aren't on the transplant list." and this is my fault because? If they are sicker than me, then maybe they should be on the list. She also had to mention that, "there are people in the GTA who are on the list, and are living at home." Right they are living AT HOME. I am 5 and a half hours away from HOME, and she is making me feel as though I am taking up a bed for a local who is sick. So sorry, then you should have let me stay in Ottawa, where I was close to my family.

While she is talking, I interrupted her, asking her to stop talking about this, I was getting different stories from different people, and I wanted to hear the right thing. Bo one was saying the same thing, my Doctor was saying one thing, Ena saying the same, the Nurse Coordinator for the transplant team is saying one thing to us, and recanting, the stress is unbelievable at this point. My brain is taking a day off. I can't handle it anymore.

I am in a strange place, new, faces, people, stories. Nothing is being done, but everything is being said. As I tell her twice to STOP talking about it, and to leave my room, she didn't. Finally after being rude, she decides to leave. Now she's going to mark on my chart that I am a difficult patient. All was well till she walked into the room, and opened her mouth. Finally she leaves, and I sit on the bed, by myself and cry. How can someone be so heartless, and have no bedside manner.

At this point, I want to jump out of the window, flag down a Cop and ask him to take me to the airport, sneak on a plane, and fly back to Ottawa. I DON'T WANT TO BE HERE ANYMORE!

When I told mom the story she was none to impressed. Mom came in on the Tuesday, and we met with the CF Practitioner here, Dr. Tullis, awesome lady. It was her, Doom, and the Fellowship student person Nancy.

When Dr. Tullis explained to us what was happening, we still couldn't understand what the urgent urgency was to get us up here. I then told her, while looking at Doom, that I didn't appreciate that she told me there were patients who were sicker than I was, who aren't on the transplant list, and boldly said, that's not my fault, that has nothing to do with me, and that she made me feel as though I was taking up space. She apologized in a way and said she was wrong for doing that, then I mention that I had asked her to leave and she didn't and kept talking and talking. I said, what part of STOP and LEAVE don't you understand?

Anyhow, until further notice I am still in the hospital, so I will keep you all posted as to the new events that happen.

Cheers Friends
Ali