Tuesday, July 31, 2007
I am writing this entry practically through tears b/c i am so happy. I am here at work and I was reading the message board over at TransplantBuddies, and i stumbled across a post from a man who is 10 years post double lung tx. He had bronchiectasis and that's why he needed one. He had what I have. I am not alone. I no longer feel like the only member of this special little club. Every person i have spoken to who has had a double lung tx has had CF, and i have never read a post from an actual person who had what i have.
Words cannot describe how much hope reading his post has given me. It's completely wiped away all of my fears. I cannot wait till i am a member of the tx club. It sounds bizarre but being in the situation I am in, it is so promising reading things from people who have post tx in the double digit (years). Ironically enough, as i read his post, the song Believe by Suzie McNeil came on my iPod. If you havent heard it, go download it. It's beautiful.
I cannot wait for things to come! :)
Sunday, July 29, 2007
Whoever said retail therapy is a bad thing, I beg to differ! After dropping $109 in Garage w/o trying anything on, i WAS feeling smidgen of guilt. I quickly assured myself that i rarely shop anyway, and that over time the amount of stuff i bought would eventually add up to $109, if not more. Plus, i needed new stuff, seeing as i have a lot of shit from when i was 17,18,19 that's a little more than immature and i figured it was time to get rid of that shit and get some age-appropriate things. Finally I have stuff i can wear at the office but still feel comfy (ok so i bought t-shirts and tanks but they're nice). For those who know me, i hate being overly dressed up. Yes, i like dressing up, but for the most part, given that i feel shitty as it is, i like to be comfy. I don't like dressing up everyday like my sister, who consider's a skirt every day wear. I wear skirts rarely. Oh well, enough about that!
So here i sit, after trying everything on, i feel emotionally fantastic. After yesterday's debacle of my dad threatening to give my cats away, i moped around and cried like a 12 year old all night. I isolated myself in my room and spoke to no one. I'm not lying. It wasn't until this morning, after not speaking to my dad for 15 hours, he told me Zoey got up on his lap lastnight and slept while he was watching TV. He told me it was cute, and after i responded bitterly, "Why? You hate her anyway..." he assured me he would never give a pet away. Am i feeling bad for actling like i did? Somewhat, but sometimes you need to be childish! People don't understand that these cats are my children...they are.
Um what else? Yes, seeing as i dropped a significant amount, i was then rewarded with a free bag. Yippee! It's not the most attractive thing to be honest, and i'm not fond of the material (feels like a rain coat kind of material). Anywho, it will be perfect for school in the fall and spring, and yes, the cincher - IT CAN FIT MY OXYGEN! How fantastic is that! I never thought i'd be thrilled about that but i know i'll prob have to bring it to school with me when navigating campus so w/e....i'll try it. Sure i'll feel like a loser but at least i'll look cool. I'm not overly tired from my shopping excursion, but fuck it is ever hot out! It's about 30*C, with humidity it feels like 38*C. I am going to begin reading the new Harry Potter again b/c nothing else feels right that i begin reading. I won't lie; it feels wrong. Like a death has occured and only until this feeling passes i will obsess over the loss of having no more Harry Potter books being written ever again. Childish? Maybe, but it's how i'm coping with this.
What else? My doc called Friday when i was at work and wants me to call back Monday. Hopefully it's with news from the tx center and not just "we have news from the sleep lab" or "there's something in your last spit culture" YUMMY! PLEASE PLEASE PLEASE HAVE IT BE FROM THE TX CENTER *crosses fingers* I JUST WANT THIS OVER WITH EVEN THOUGH IT'S SCARY!
Currently i am talking to my friend who informed me that yesterday he spent all day at Hillside (a weekend long concert that's a huge hit in the province...maybe country even, i don't know). But i know that Tara and Krystal went too. He told me he was there all day and night, and then went downtown (meaning to the bars) afterwards, then WALKED home from downtown to his house, which is more than halfway across the city. He got home at 4:30. WOW! I can't wait to do that again. Last year Krystal and Tara and I had an all-night romp downtown. We got so drunk and it was amazing. I was so pissed i passed out 3 times in the Underground, I have no idea how we got home, and when we got home I didn't beleive we were there. I refused to fall asleep b/c i still beleived i was in the Underground and i was imagining everything. After Tara reassured me we were infact, back at their place, i slowly fell asleep. I threw up twice also, but regardless, it was a lot of fun and i can't wait to be silly and wreckless again and just have boundless energy to go out and stay up all night. WOO HOO!OK....i'm acting stupid so i'm going to go to save myself from further embarassement.
Friday, July 27, 2007
It's Friday, there's nothing to do
I went and got gas
I nearly passed
At the price that came up
I was screwed
Onward and forward I drove
Down the winding and foggy backroads
Alone by myself
I was leaving just like an Elf
Onto work I sped down the dark road
I got here 2 minutes before
I dragged myself up to the door
I rang myself in and hauled my shit in
Sat down with a huff I was bored
But alas! My head screamed
It's Friday, me thinks!
And a smile krept up on my face
No one is here
I have nothing to fear
I am planning an early escape
Thursday, July 26, 2007
"What are you doing?"
"Reading Harry Potter."
"Are you finished reading that book yet?"
"B/c people like you won't stop talking to me..."
"How's the book coming along...?"
"It would be better if you stopped talking to me so i could actually finish it"
"So today i had the most amazing thing happen...."
"...Are you even listening to me?"
..."No actually...i'm reading....but apparently no one can see that so I may as well just stop being so selfish and listen to you gab on"
And so you have it. Why am I not finished reading yet, you ask? B/C PEOPLE WON'T STOP TALKING TO ME!!!
Hopefully when i get home from work, i can prop myself outside in the hot sun and people will leave me alone. But with my luck, my mum will pop up through a window and start talking to me anyway.
Wednesday, July 25, 2007
So now Jenny is way ahead of me...Chapter 33 i beleive....and i'm on Chapter 21. She has 60 pages left and told me she wanted nothing more than to lock herself in the bathroom and finish reading it. I told her that if she wanted, she could run to the bathroom and i would announce to everyone that she had explosive diahrrea. When people ask why she was seen dashing away with her book I will answer, "She knew she'd be a while..."
I didn't quite know how to answer her however, when she mentioned how she'd explain the absense of smell for said explosive diahrrea. I was shocked; just as shocked as I was when she told me on Friday she wanted to stab someone in the face. I know I talk about wishing to strangle people....but i'd never stab someone in the face...Jenny worries me sometimes...
Anywho...back to the main point of this show: ME! The last 2 days have been quite concerning for me, I must admit. I've woken up the last few days feeling like I havent slept at all, even though i slept for 8 hours straight. For some bizarre and ANNOYING reason i keep waking up at 5am - it's a huge pain in the ass b/c it's like, "FUCK! It's 5, i can still sleep....but only for an hour!" and it's not even worth it. I don't know if that has anything to do with my tiredness, but i doubt it. Could it be that i've not gotten to bed till 10:30 each night? I'm hoping that's it. I'm going to try to get to bed by 9:30 at least tonight and see if that happens. If not....then....i'm SOL and don't know what to do! I wore my O2 to drive and it didn't do too much..i mean it helps but wearnig O2 isn't a cure for tiredness. I'm thinking of introducing a mandatory Sleep Day to the working world, where you MUST take the day off and stay at home and do nothing but sleep. It would be spendid wouldn't it? If not, then going home to sleep, or staying home to sleep, should be a viable reason for not showing up to work. I fully support this idea.
What else? Yes, before I go I must announce that a woman on the board i post at, Liza, her daughter Anna got THE CALL for lungs yesterday! So, just wish her luck! GOOD LUCK ANNA AND I WISH YOU ALL THE BEST!
Until next time!
Tuesday, July 24, 2007
It made me think today of when i had my 'something isn't right' moment. It was back in January (i hate that month for several reasons, now i've got one more! Yipee!). I was thrilled that the winter semester had began, b/c it meant new classes, new buildings, new everything. One class was all the way across campus, and while i knew it would be a bitch at first, I was excited b/c I knew the exercise would make my lungs better and i couldn't wait till the end of the semester when i could stride at ease across the the property in half the time...
That never happened. I never felt better, I felt worse, and I didn't get faster, I just got slower. I began creating excuses to miss that class, and thank god we had a lot of horrible weather that only supported my reasonings for not going ("Wow...it's sure windy out today! I better stay in the library on MSN not accomplishing anything b/c I think I may blow away" or...." It's too cold to walk outside" - typical).
Anywho, the reason was simple: I couldn't do it. It got harder and harder. I began looking for landmarks that I could spot that would encourage me to keep going (the bench! if you reach the bench you can sit!). Always when i got the lights to cross the street, i felt if i took one more step i would pass out. My heart would pound in my chest, wanting to break freak and beat away from me on the cold, sodden ground. My legs felt like rubber. When I got to the building i would pant like i had run a marathon. After i calmed down I'd get hot, and i would get a searing headache. I hate this, and it was this experience that greeted me every other day, twice as day, as i made the summit to MacDonald Hall.
Then one day, my real 'something wasn't right' moment struck. I couldn't walk to the bus stop. I mean i could, it was at the end of my street. Any healthy person could walk to it in under a minute. If the bus came at 10:30am, just leave at 10:29 and you'd get there in 30 seconds.
It took me 10 minutes to get there. I had to take my time. I cannot count the number of times i missed the bus b/c i couldn't walk fast enough and i wouldn't dare run to it (once i did, and how that happened is a miracle beyond miracles). I began hating the walk to the bus stop as much as i hated walking to MacDonald Hall. I didn't understand how people could do it....
Anywho, that's all. I'm late for bed again - damnitt.
Friday, July 20, 2007
She sucked my artery shut. No blood came out. She kept trying but finally I told her to take it out and try somewhere else. I told her my elbows were good spots, and sure enough she got it and got blood. When they actually take blood from your artery, the location and surrounding area hurts for a good couple of days. It was heavy and sore for about 4 days after, but i had no bruise. When she stuck the bandaid on me she left me to myself and it all hit me. I began crying again and she found me and hugged me. I told her I had to go for a full body x-ray after and needed to go. She walked me to the elevators, gave me instructions on where to go, and told me to come back up and talk if i was still upset. She was really sweet and I appreciate the comfort she gave to me more than she'll ever know.
Needless to say I forgot the directions she gave me and I got lost. When i found the place the x-rays went great. The only struggle was not crying during them b/c you have to stay perfectly still. I ended up losing my hair clip though in the x-ray room. It was cute. Oh well.
Then it came time to go for Gamma. As soon as I saw my nurses I cried again. I cried really hard. I told Mary I'd elaborate but I had to go to the bathroom first. I had to throw up. So i told all my nurses I just found out I need a lung tx. I needed to talk to my doc first to see what she said. She called and said that she didn't think it was urgent, but to schedule an appt in her office the next time I go for Gamma, as she had not yet had a chance to look at my numbers. She said the pulmonolgist had no right telling me i needed a tx since she's not a doctor, and that she most likely freaked out when she saw all my stuff. I felt a bit better, but I still had the task of telling my parents.
I called my mum and ended up telling her on the phone...I don't remember much of the convo b/c I tried to be brave. I cried a bit on the drive home but not much, since I left all my tears at the hospital. I ended up staying longer b/c my doc didn't want me driving when I was upset. The nurses told her I was inconsolable. So i got home and told my sister. She was shocked. I asked her if she was going to cry. She said maybe later, when it all hits her. I told her that was ok. Eventually we had a small cry together....and then my dad got home.
Oh dad. God bless you so much. You're just like me in the fact that you try so hard to be brave and it's incredibly obvious that you're upset. Even though this has already happened, writing it feels fresh and i'm crying as I write it. "Breathe" by Anna Nalick is even playing on my iPod (it's on random so i didn't select it either). So home came dad. He called before asking about supper and also to ask how my appt went. All i mustered to say was, "Not well..." So in he comes and I told him play by play how it went. You can probably guess how it went. He wanted to know the implications of getting a tx and all that. I couldn't answer honestly as i didn't know myself. I just remember crying and putting my head on the counter and saying, "I'm sorry....I'm so sorry...I fucked up." My dad came around the counter and hugged me and we just at the two of us and cried and cried and cried. It was so sad.
Mum came home and we told her. She's good at hiding when she's sad. She tries to be brave for everyone. The night wore on and i went to bed...but soon i came down crying hysterically b/c i still didn't understand how this had happened...how i missed every sign along the way and just ignored it. I hated myself. I felt like I was going to die and that i had let it happen. My parents were upset, but mainly upset that I hadn't called them to come to the hosp. I said I couldn't scare them that way, when i didn't know 100%. I remember my dad said, "still...you should have called....we should have been there for you...you didn't need to go through that alone..."
Fast forward 4 weeks to my doc appt. We talked about usual things, and then lung tx. My dad came with me. By this time my parents had had enough time to accept the fact that I needed one, though my dad still got upset. My doctor confirmed that I did need one, and that we would discuss evaluation for it around the fall. She also told me i had waited long enough to go on O2 and that i needed to begin it at night now. I didn't have any heart probs, and if i layed off the O2 any longer i'd put myself at risk for it.
Overall that appt was amazing. She was calm and there were no tears! Since then I guess you know we've accepted tx and it is not some horrible thing. A referral for tx assessment has been sent and now i have to wait for a reply. I read that it can take 3-4 weeks. So far...it's been 1, lol.
Anywho, that is a lot for today so I will let you go. HAVE A GREAT DAY! HARRY POTTER COMES OUT AT MIDNIGHT!!
So yeah, blah blah, i got dx with BE at 17 and have been on a steady line since. Never really got a ton better after the initial dx. The highest i was able to get my functions back up to was about 60%. They've slowly slowly gone downhill over 5 years...which honestly, isn't bad considering the fact that they told me to expect getting hospitalized for an infection at least once a year. Well....i havent been hospitalized since I got dx so that's pretty damn good!
However, this winter of 2007 I started feeling slowly worse. It didn't really get cold until the end of January, and almost as soon as the cold came, i felt terrible. This isn't unusual for me. People with chest probs in general have a harder time and generally feel worse during the cooler month. No big worries really, i figured. It was unusually brutally cold and I figured my body was just unable to adjust to it. To add to it, it would get frigedly cold (like -10*C and lower), and then it would warm up for a couple of days and then plummet again. I say warm up but it would hover around 0*C...that's a huge leap in the winter time.
I always feel bad in the morning until i'm able to properly clear my chest out, and soon I was spending hours on end doing physio and nothing worked. The tightness just wouldn't budge. So i started to nebulize HTS and for the first 5 months it worked excellent! I was feeling great, but slowly i began to feel shitty again. I mentioned to my doc that when I walked i would feel after a certain amount of time like I was going to pass out if i just took that one step further. So she scheduled me for an echocardiogram, where they take an ultra sound of your heart to see if it's under stress. This test would show if i had pulmonary hypertension (PHT) or not. PHT is high blood pressure from your heart into your lungs, and cannot be detected through regular blood pressure monitoring. Over time, PHT will weaken your heart b/c it has to work that much harder to pump blood into your lungs and body, b/c there isn't a sufficient supply of O2. So I got the test and it came back completely normal - YAY!
It was this appt that I first heard the spoken words, "LUNG TRANSPLANT". Fuck. When my doc quickly mentioned it when my appt finished, i was too stunned to ask a thing. I walked like robot into my car and lost it. I cried and cried and cried and cried. I hit my steering wheel and screamed. I'm 21, I thought. I shouldn't be going through this! This isn't supposed to be happening!! I remember I was driving down King St, the tears streaming down my cheeks and soaking my coat. I cried so hard my tears stung my face. I had to compose myself and i couldn't tell my parents that the inevitable words had been spoken. Had my parents even thought about this?? Probably not, I figured...as far as they knew I was fine and dandy. Apparently not. Long story short, i got home, mentioned I needed an echo and mentioned that my doc brought up transplant but stressed that it was most likely way in the future.
I was happy when the echo turned out normal and soon forgot that tx had ever been muttered. But then, a short while later, I began not caring anymore. Not caring about what, you ask? Everything. I just no longer had any desire to do anything; had no motivation. I just didn't give a shit. I figured it was my heavy course load at school and the tremendous amount of work I had with it, b/c in all honestly I did have a lot. In March alone, I had 2 assignments due for every week that month, sometimes three. It was brutal. I was increasingly getting tired all the time. I felt so lazy and thought it was just me. I would have good days though and it wasn't constant, which only made me feel more like i was just being a lazy shit.
April rolled around...I had all my exams the first week of exam week. I was so happy when I was finished, but bummed b/c I had a lot of doc appts coming up. After exams finished, my friends and I went out April 20th to celebrate. I havent been to the bar since. After that date I began feeling worse, but it felt so gradual even though looking back it's not that long at all. I thought maybe it was all those late nights i pulled studying that were finally catching up to me. Despite it all, I always looked past the obvious and made an excuse for feeling bad. It never occured to me that my lungs were literally getting worse in front of my eyes. I never thought it would happen like that; i always expected an infection or something to take me out and bring me down.
I went to my yearly check up at Sick Kids and all was well. The docs said i looked great and took 10 viles of blood (as opppsed to last years 13). When i was sufficiently drained i was free to go home. To be honest I felt ok, but I did ask the doc I saw about the prospect of tx. Funny thing, he didn't really want to talk about it, it seemed. Maybe he knew it was in my future and didn't want to scare me. Bless him for that. After that appt I began feeling terrible and figured it was the constant weather changes. I had my PFTs (pulmonary functions test) the next week and i knew they would be horrible....I just knew it.
I remember I wore my black sweatpants and a tank top that day. I beleive i've got the same tank top on today! I wore no make up b/c I knew I'd be crying. Sure enough, I barely blew on the PFTs. It was odd...but the pulmonologist made me feel so comfortable. She told me to not rush and just do what I could. Usually they're all finicky and want you to "blow blow blow keep blowing keep blowing keep blowiiiiiiiiiiiiiiiiiiiing all the way all the way all the way! Blow out as hard and as much as you can!" But she let me take my time and not rush it. If i blew out with any force it would end in a coughin fit and honestly, who wants phlegm all over their expensive breathing machine? She could tell I was upset. She let me finally take my meds and I got 2 shot of ventolin and waited 10 minutes and we did the test again. One of my FEV levels (Forced Expiratory Volume I beleive), improved 118%! But i guess it wasn't enough...as my PFTs came out at alltime low of 27%.
I sat there, crumpled and defeated, and the woman turned to me and asked quietly, "...are you listed?" and i looked up through fresh tears and said, "...for a tx?" and she nodded and said, "Yes." and i said in a small voice, "...no...why?" and she said, "You should be."
She blew the gasket on the sacred word that no one was allowed to mutter. She said it. She said it with confidence. I lost it. I started bawling and crying and my world fell apart. I didn't know what to do. I was all alone; i went to these appts alone, b/c i was going for my IV right after. What was I going to tell people? How would I tell my parents I thought? It was just me...alone...with myself to console me. We had to be ok. We just had to. But how could I be?
Thursday, July 19, 2007
As noted in my previous post, I planned on making homemade potato soup - and i did! I drove after work to Sobey's and had my recipe in hand. It called for 9 items and I needed to pick up 6. I needed potatoes, an onion, 3 cans of soup, and Keilbasa or h/e the hell you spell it.
So there i walked into the grocery store at my snails pace. I picked up a black basket with "Sobey's" scrawled in green across the little handle. I went and got my potatos, and then my onion, sausage, and then cans of soup. I took my time b/c I was tired. About 20 minutes later it was time to cash out. It wasn't until then that i realized how out of breath I was....how carrying around a basket with 6 items in it, and a purse, had utterly exhausted me to the point that I was breathing as hard as someone who had just gone for a run. I began to get that familiar almost-dizzy feeling...light headed.
The cashier was super sweet. I don't know if they noticed, b/c as much as i beleive that i can disguise my SOBness (see sidebard for abbreviations) very well, I know for a fact that people notice it, and are too kind to say anything. My dad always says, "Are you alright?" and i say, "Yea, why?" when i'm clearly not, and he answers, "B/c you're puffing..."
So there I was...standing alone at the cash out, with an old couple behind me....breathing hard and wanting nothing more than to be sitting down in my car out of view. I just wanted to huff and puff on my own. When i finally got there it hit me at just how shitty of a condition I am in. I can no longer keep up. Fuck me if I can make it out to the bar Saturday....I know I can't. I drove to the mail box down the street tonight for god's sake. It's very surreal to say the least.
I don't cry about this anymore. There's no point. I'm not dying or anything. I just remind myself that this is a temporary situation, and as shitty as it is, I have to make the most of it b/c soon it will be gone and I'll only have lessons of it to carry with me. That is also why I began this blog, to chronicle everything I am going through, and going to go through. There's so much out there about post-tx life, and i love reading it b/c that is my future. But for now, this is my present and I want to read about similar things...I want something to relate to for once. I know that I am not alone, as lonely as it may feel sometimes.
As much as it sucks and blah blah, there is someone else who has it worse. I am going through this for a reason and I will come out with a greater appreciation for things than I've got right now. If this blog helps just one person, or raises awarness for just one cause, or what have you, then I'm doing something right, then that is all I can ask for.
That's all for now. I need my sleep. I hope you all have a good night.
Should this plan fail, or should we arrive late or god-forbid at the back of the line (even though we've both pre-ordered) I have instructed Katey to crush the children under foot with me and haul ass to the front of the line. The children must be stopped.
From that point on, we will bask in glory and celebrate our victory by actually scoring Harry Potter and the Deathly Hallows mere moments after its release! WOO HOO to us! YAY! We will spend the rest of the night at our respected homes deeply ensconsed in the novel. I cannot wait.
Before the long awaited Mad-Dash for Harry, i am going to Turtle Jacks with Beka for supper and some breaded pickles. Sounds gross? Don't judge people! I thought they were disgusting when i heard the name too, but nothing is more bizarrely savouring than breaded, pickley goodness. I kid you not. Go to a Turtle Jack's near you and get some! WOOO! *cough and then go get the new Harry Potter*
Um.....what else? I'm at work, bored. My boss is on holidays and i have nothing, nothing nothing, i tell you, to work on. I'm creating things for myself to do. I went into Excel and coloured in the squares in patterns, and then i did my name up in Excel the very same way. I've read my book, and am about to go on my last break.
I'm sincerely contemplating leaving early. My parents have gone to a friends cottage for the day/night and I plan on making homemade potato soup. YUM! I have to pick up all the ingredients though so that's kind of a pain in the ass but oh well!
I'm going to go.
I just realized the date and it means that i've officially been on O2 for one month! HAPPY ANNIVERSARY BED BUDDY! KEEP UP THE GREAT WORK!
Wednesday, July 18, 2007
Anywho, onto today's topic: Zithromax. Not entirely sure what this little drug does but i know it's an abx(antibiotic....note to self:must create sidebar for medical abbreviations). It is meant to decrease inflammation and at the same time it takes care of infections! A two-fer! WOW! A packaged deal! It's a red little pill that looks like a very tiny submarine, and it goes now nicely, unlike Septra which has powder and likes to get stuck in my throat. I began Zithro last week and have seem improvements. I don't really cough and the tightness in the middle is gone.
I don't like these improvements, they worry me.
I barely cough. Not that i enjoy coughing, b/c i don't. But now that i don't cough, it means all the stuff that i usually get out, stays in. I get SOB (short of breath, not son-of-a-bitch like it usually means) way easier, and my cough just sounds nasty nasty. It's all in my upper airways too and is just....ick. It's so thick and horrible. My HTS (hyertonic saline, nebulizer) does dick-all now for me. As well, since beginning Zithro the front of my throat is sore to touch. Around the base of my neck where my collarbone is, and up on either side of my vocal chords and right underneath my ears, especially under les ears. I'm going to have to take a Motrin for this. As well, i have had headaches for the last 2 days. I know the muscle soreness and headahces are side effects of Zithro, but it wasn't prescribed to me as just a course abx (meaning you take it for 2 weeks and that's it). I was given it to take 'forever'. However, my doc told me that if i like the drug to keep taking it, and if not, i can discontinue and it won't do anything. I think after i'm done this run i will not continue it.
What else? I went and saw Harry Potter and the Order of the Pheonix last night! WHOA - POTTER GOT HOT! I think everyone got hot actually. I'm ectatic for the book to come out Sunday too. WOO HOO! Finally, a good summer read again, eh!
I don't have much else to add right now. May add more later. Must go now. Lunch. Yum.
Tuesday, July 17, 2007
One day i managed to sleep for 14 hours. Not to be rivaled to Robert, who has no breathing problems to speak of...he slept 15 hours solid once. My friend Lindsey told me she once slept for 16. Sometimes there just aren't enough hours in the day to sleep quite frankly, and it must be drawn out longer.
Naps aren't short intervals of unconsciousness. A nap for someone like us is an average night's sleep for regular people. Case in point, you wake up Saturday morning at 10am. You went to be at roughly 11pm. A short hour after being woken up, you're tired from doing small things and you inform people that you're going for a nap and will re-emerage in 7 hours at roughly 5pm. I'm not a napper...but once i did for 5 hours and it made me feel worse than i felt before.
I'm sitting here at 10:20am, tired beyond beleif. Due to my inability to shut up, i was on MSN until 10:45 last night. I woke up twice during the night. I am proud to announce that I actually brought some O2 with me to work! It is currently on the floor....but the fact that I brought it out is a big deal b/c it's sort of embarassing to be honest. I wore it to drive to work b/c driving to work so soon after waking up (When i'm still sleepy) is hard. There isn't a day that goes by where I don't contemplate pulling over and sleeping. Sometimes i honestly pray for red lights so i can just rest my eyes..even if it's for only 3 minutes. Oh well, blah blah.
Anywho, that's all for now. It's pretty smelly here in the office today...I wonder who it is...
Monday, July 16, 2007
Now *smiles* that being said, I must comment on two recent incidents that happened in regards to my little rant above. Last night I was in Shopper's, in the most embarassing of isles to ever be spotted in, let alone to begin hacking in. I was looking for tampons and all that fun stuff when it struck. It wasn't just one small cough like I had suspected, it was small but it just kept coming and getting stuck in my upper lungs. Ever since i began Zithro last week, while i don't cough as much and the tightness is gone, the mucus is a lot thicker and i don't get much out...which means it's either caked onto my lungs or the swelling down there has decreased and production has been brought to an almost hault.
Anywho, so I'm coughing and coughing, and wanting to make a decision and get the hell out, and this person looks at me and says, " Ooooh.......I've had that before...!" and points and proceeds to grab their chest in fake pain. I know they meant it in the nicest way, and I don't mind when people say that, it's ok, b/c they don't know. It's OTHER comments I don't welcome which i will touch on in one sec. I always laugh to myself when people hear my cough and think it's something simple, like bronchitus or pneumonia or something. People always tell me i've got pneumonia and that I should get that checked out. Sometimes I want to slap these people.
Then there are those OTHER comments that are rude, regardless of what the person's intentions behind them are. Example, last month (or the month before...who knows when) I was at my desk, coughing away as only I can do, and some PRICK who works in the cublicle adjacent to me walks out and comments, "That sounds nasty!" and i said, "Yuuuuuup!" and he walks by again and says, "Does it hurt as bad as it sounds!?!" and i said, "Nooooooope!" and i continued working on my merry way.
It occured to me then, aside from the fact that I wanted to leap over the small dividing cubicle and strangle this man, that I would never in a million years say something like to anyone. I then decided that the next time I'm in the bathroom at work, and someone takes a shit, I'm going to wait in the bathroom until they emerge from the stall and say, "WOW! THAT'S A PRETTY SMELLY SHIT YOU TOOK THERE! DOES IT SMELL AS BAD IN THE STALL AS IT DOES OUT HERE!?!" and see how that person reacts....
The more I think of this...the better the idea becomes....
Saturday, July 14, 2007
Almost 2 months and counting, we finally have rainfall here in Southern Ontario! While everyone around us gets pummelled by thunderstorms day after day, we sit and swelter in the 35+ degree heat, and the storms just float through and don't give us any rewards by giving us the joy of having a storm.
But now, the skies have opened up and they are pissing down on us. Just as i got up the energy to go to the mall to get my precious Guess purse fixed, as well as drop a few unnecissary $$, the sky felt it was time to finally snap.
It's monsooning outside. It's coming it buckets but we need it and I really don't mind. I WAS decked out in sweatpants and a t-shirt but when my mum said, "You're wearing that to the mall?" i had to change into jeans. So i did...and now i sit here, dressed up and i'm not going to the mall b/c it raining and i don't feel like getting wet.
So blah....I sit here and I stare out my window.....and I wait. We're most likely going out for supper (b/c it's Saturday and we're all too lazy to cook food on Saturday night) so I may as well just stay as I am.
Other than that I feel pretty good today. I got 9+ hours of sleep and the O2 stayed on my face all night. I didn't wake up once (well, I woke up at 7am to pee but that doesn't really count). I looked at the Monster and determined it wasn't completely set at 2L/m (liters per minute) so i pushed it up a bit and got a much better flow through the cannula! So that helped! But mostly today is boring so i am going to shut up and let you go.
Friday, July 13, 2007
How was my Friday the 13th you ask? Well.....to sum it up, it was HORRIBLE! It started off great....i got to work and actually was doing stuff, and not at an incredibly slow pace either but at a steady pace, and things were working out. I went to Timmie's for lunch with Jenny b/c making your lunch just isn't cool anymore, and we discovered that the myth about how bad things happen on Friday the 13th was just bullshit. Nothing had happened to us yet and people were just stupid.
Well, i seriously fucked myself by saying that b/c my afternoon turned out to be HORRIBLE! Literally, an hour into my post-lunch day, i got swamped with a lot of stuff to do. That was ok, it's work and i understand that, but it's like my brain and rational thoughts, and just the basic ability to think like a proper human being should, completely took a leave of absense and went down for a nap or something. I mentioned yesterday that I stopped at a green light...well....today's stupid mistakes are just as bad, if not worse. My boss sent me a document to update, so i updated it, hightlighted what i altered and saved it, or so i thought. Don't fear, it actually saved, but i had a bitch of a time finding it. I found it eventually, and sent it a long its way....only to realize it was a read-only document and should couldn't see the actual changes. Embarassing! So i wrote her an email appologizing, realizing the document was the wrong one. I found the proper one, saw that it was fixed and sent it on its way...
5 minutes after i sent it, i received an email....from myself. What the hell? I thought....I opened it, and low and behold was the document that i just emailed. I replied to the wrong address! So off again I sent it....3 emails later I finally got it right and sent it to my boss and not myself.
Then the fax machine...don't get me started. I'm not going into details but lets just say I had to fax letters to local numbers and put a 1 in front of the area code, making it think it was going long distance when it wasn't. I kept going to my boss asking what was wrong. I just wasn't thinking today. I was getting tired and I just wanted to go home.
Currently i'm sitting here hooked up to my O2 trying to wake up (even if it is 11pm). The plan tonight is to stay up as late as possible and not fall asleep early like a puss as only I can do. I go to bed by at least 9:30 every night. I have no energy at the end of the day for anything - i literally work, eat, go to bed, wake up, do meds, and start the whole vicious cycle all over again. My summer has been snatched from my pale little hands. I havent been out to the bar since April. I'm getting sick of this....I seriously am.
W/e....i have nothing else to say. I'm too tired and I just want to crawl into bed and wrap myself in my cashmere blanket.
Before I go I must comment on my dream last night. My family moved to Ireland, but the houses looked like English houses (unless English and Irish houses look the same...i dont know though). There was a massive wind and rain storm, and when it ended i ventured out of the house. To my surprise the beach/ocean was around the corner of our house, and people were in the water. I sat on the shore when the Loch Ness monster swam up and ATE MY WALLET!!! She was HUGE and said, (yes, she spoke) "Don't worry you don't need it" and i looked in my hand and saw that I had my debit card. She swam off, and people continued to play in the water like this happened everyday. It was bizarre, and scary. VERY SCARY!
Ok, Im off. Good night sleep tight. Don't let Nessie bite and steal your wallet!
Thursday, July 12, 2007
What a day it's been! Last night my mum, sister, and I went to see Dancing with the Stars LIVE and it was AMAZING! I loved every second of it!!!!!!!!! I am so thankful to my mum first and foremost for such an amazing evening! I was worried I'd spend the entire time miserable b/c we'd get a far away parking space, have to walk eons to get to the venue, and then concquer frighteningly monstrous concrete steps.
THAT WAS NOT THE CASE AT ALL! We got an uber close parking spot (we still had to walk some but NOTHING horrendous), AND the place had escelators! WHO KNEW! Why i never considered that they'd have escalators is beyond me. To make it better our seats were a stone's throw from the escalators, right beside the selling tables (where I scored myself a DREW CREW t-shirt) AND directly across from the bathrooms! The bathrooms never had a horrendous wait time at them and when the show was over no one got trampled in the mad rush to get the hell out of the place. WOO HOO! It really made me miss my dancing days but is definately inspiring and makes me want to dance again! As for the show itself it was fantastic and every costume the girls wore I would like my own version of, just for every day wear. They were so sparkley and pretty and if you're under 10 years old by far the best dress-up gowns ever! And the shoes! DON'T GET ME STARTED!!!!!!!!!!!!!!!!! I loved the shoes!
Now to today. Today I had the day off work b/c i had to go for my IV of Gamma. All went well - for once! Yes, my nurse Arlene (who i love to peices) had to poke me 3 times (once in each elbow) and finally she got a vein in my wrist. It hurt getting the gamma in coz it's so cold it makes your arm feel tingly. My hand felt numb. Oh well. It ran for 1 hour and 45 minutes and i was unleashed back into the world. I've got a massive bruise on my wrist but was rewarded with a Tweety Bird bandaid. Afterwards I had to pay a visit to my RT (Respiratory Therapist) Cynthia, where, JOY TO THE WORLD, it was discovered that SMALLER PORTABLE OXYGEN TANKS DO EXIST! I scored 2 and discovered that i'm not homebound all summer. That if i want to spend the weekend at people's cottages I can! All i have to do is call ProResp and ask if i can 'rent' (more or less....ok so maybe it's more like borrow) a smaller Monster for the weekend, and tell them when i need it and all will be swell. YAY! WOO HOO! Who knew i'd ever get so excited about brinigng oxygen places....really!
What else? Yes, upon my exertion home, I came to realize that as a single unit, myself and my oxygen deprived brain are quite stupid together. We just don't think that well. Example number 1#: I stopped at a green light. I sat there and waited for about 10 seconds before i realized, "Oh! IT'S GREEN!" much to the anger of the people behind me. #2: I really shouldn't be giving my opinions out when people ask me something, b/c in all likelyhood i'm just not paying attention anyway. I mean, I'm staring and listening, but don't expect me to tell you what you've told me. I just won't remember it. There are countless more out there, but I just don't remember them. Seriously.
I had more to write about but I just don't remember. Hopefully it will come back to me...at some point.
Wednesday, July 11, 2007
Anywho, I want to make this article about TEA. You know it, you've probably had it too. Recently I have started loving tea. My favourite is Irish Breakfast, Rose, and Earl Grey. I went through a phase where I needed a new tea mug and had to find the right sized one and it took eons. Eventually i found out in my basement. A couple of minutes ago Jenny sent me an email from across the office informing me she was having tea. I want some too damnitt but i don't have a cup here *frown*. Today is a perfect day for tea!! It's cooled off by literally 20 degrees (it's 21*C as opposed to feeling like the 41*C it's felt like the last 7 days). I screamed in horror and from hypothermia when i stepped outside for lunch and the cool 21*c air clashed into my bare, frazzled arms. I felt assaulted by the temp change since this morning it WAS humid but now it's not.
It's cloudy out now and a cold front is moving through. The sky is bluish grey, and the clouds look like rolling hills in the sky. It looks cold - much like when you go to the lake and it's cool and you sit at the shore and freeze and shake, meaniwhile 4 year olds are having a blast in the frigid water. You sit there and silently damn them in your head for having no feeling for the coldness of the moment.
ANYWHO - now that you know how cool it is today, I would love nothing more than to be at home in my favourite pair of sweatpants, a sweater, with a hot cup of tea sitting outside at the pond. To add make it better it would be rainy. I don't know why i want a rainy day....but i just do.
This was rather pointless wasn't it...but i bet you want to put your sweatpants on and have some tea now don't you!!!!
So i was blowing and blowing, and it was so offensive sounding. I thought, "Wow, i'm getting a lot out; finally!" and i looked and again it was just all blood. Yesterday before work ended I blew out a ton of blood from my left nostril, and i didn't see it splattered itself all across my chest. It was gross, so in order to avoid a similar incident today I went to the bathroom. When i got to the bathroom my sinuses decided they would clear themselves up. I was mad. I was frustrated. Not did i physically remove myself fromy beloved chair but i hauled my oxygen deprived self to the bathroom for nothing. I came back 3 minutes later (that's fast for me) and I sat down, and guess what happened? I felt a rush in my nose and my sinuses filled back up.
Needless to say, if anyone wants to adopt a new pair of sinuses, you know where to look.
I want to take this time to give a shout out to my friend ROSIE who, last night, had her last post transplant appt with her hospital for the year. She had a broncoscopy and a biopsy done to check if all was 'sparkly' (as she says). I hope that all went well for you Rosie and that your results come back A-OK! *thumbs up* Let me know how it went! Rosie had a double lung transplant a year ago last week and I wish you much continued success!
Tonight I am going to see Dancing with the Stars with my mum and sister!!! I am finally excited about it!! YAY! My mum was sweet this morning and told me before i left for work that I could bring my oxygen with me if i felt like I needed it, or just keep it in the car and use it on the way home if i felt like i needed some. I thought it was sweet that she would make such a gesture and not ignore the fact that I do need it sometimes. I hope our seats aren't up a massive flight of stairs though. Oh well!
I don't have anything else to say at the moment, but i'm sure I will at some point. If that happens, i'll update this Blog Blog.
Have a great day, people.
Tuesday, July 10, 2007
It's not like I actually got up off my chair and searched for her. Please people, don't give me that much credit. Yes, I was concerned, but I mean....I have email and I tried to reach her that way. But I contemplated getting up and searching for a hole somewhere on the ground that she may just had fallen into.
I went for lunch by myself, as I did for break. I filled myself with ravioli, pudding, and coke, and I had time to think and watch the smog blow across the trees in the distance...
WHERE IN THE CRAP COULD JENNY BE!?! I wondered. Did she just leave and not tell me? I realized it was time to come back to my desk and low and behold who do I see at the counter? JENNY!
Allegedly, she had 'things to do' and couldn't respond to my throngs of emails b/c she wasn't at her desk. I don't know what to believe...I just don't. Yeah we're at work but honestly, who works?
Ok so maybe I'm the only one that doesn't.
Currently, Jenny is outside eating lunch alone, thinking about what she's done.
Onto other harrowing experiences, lastnight I experienced the worst pain I have ever had the displeasure of having. It was at the base of my ribs at the top of my diaphragm. Everytime I took a breath in, it pinched. The more i breathed, the more it hurt. I felt the pain in the center of my back. Omg....am I dying? If i go to bed will i not wake up? What if i suffocate b/c of this pain? I won't sit here and lie - i actually started crying to Krystal on MSN about it.
I tired coughing to make it go away. That made the pain spread. I coughed to the point that i felt a surge and I almost threw up. OH NO! I thought. I CAN'T THROW UP I JUST TOOK MOTRIN! I brushed my teeth and kept coughing. And coughing, and I couldn't stop. And then i felt something dislodge in the pain site. Could it be food stuck in my esophagus and smushed against my diaphragm? I certainly had no appetite after a couple of bites at supper. I made myself cough until i puked.
THE PAIN WENT AWAY! YAY! Out flew a huge peice of hotdog that made a home for itself. I instantly felt better, but i still had some pain, and still do, but it's not horrible the way it was. It was very, very scary. Needless to say, I'm never eating a hotdog again.
Anywho, I have to get back to my postal code duty. Talk later.
Recently I have been getting a lot of questions as to what exactly is 'wrong' with me, and I realize that not everyone who reads this blog knows me personally the way my friends do, who know everything there possibly is to know about someone b/c they just love me that much. At least that's what I tell myself.
So let's begin. You may want to grab a snack and go to the bathroom before beginning this b/c it's looooooooooooong.
In the wee hours of August 23, 1985 (3:23am, don't you forget it!) the bestest baby to ever grace this planet with their exceptional presence, moi, entered this world. I don't know how much i weight or how long I was, but none the less, there I was. 2 days after I came home, my nana noticed I wasn't breathing correctly. Eventually, I was taken to the hospital where it was discovered I had pneumonia. As time went on they discovered it was a bit more than that, and I was air lifted to McMaster University Hospital in Hamilton where I'm assuming they had better facilities to treat me. There, they discovered I had an immune system problem, and I was whisked away in the dark of night to Sick Kids Hospital where I remained until February 1986.
Turns out, little baby moi was born with an extremely rare condition called ADA SCID - Adenosine Deaminase Severe Combined Immunodeficiency. Yes, that's exactly what it's called. Don't feel bad if you can't pronounce the unabreviated name of ADA b/c even I can't. It's so rare and dangerous (apparently) that I sit here, at almost 22 years old, the oldest living person in Canada (so i've been told, and to anyone who wants to snatch the title away from me risks losing a hand - or both) with this disease. In October 1985 I recieved a bone marrow transplant (tx) from my mum, who was only a partial match. I've been told that had I never gotten that bone marror tx, even with the treatment I get today, I wouldn't be able to go outside, so, THANX MUM! To this day my mum bares that 7 inch scar across the back of her ass. Her battle scar to save my life:)
So my mum was a partial match? What on earth could that mean? Well, it means that our blood types aren't the same, but close enough to try a tx. It partially worked; enough so that after agonizing months on my parents behalf, they could finally take me home in Feb '86. I have the homecoming pic and will try to post it if i figure out how.
I didn't really go to kindergarten b/c if I wasn't sick with something, someone else was. My sister was generous enough to bring home the Chicken Pox once and gave it to me, and when i went into the hospital with it (where no one else had it) i was generous enough to give it to the entire floor:) People with SCID are told that if you get the Chicken Pox that's it - you're done, see you later. I survived! For some time when people came to visit our house, they had to gown up b/c they could infect me with any little germ they had.
But alas, around 1990-91 ( that's what it felt like to me) a breakthrough was made ( I guess) and I began getting infusions of something called Gamma which is also known as IVIG. This, people, is the immune system part of the blood. So when people donate blood, I get the immune system part. GENIUS! Since then I have been getting Gamma every month and am doing wonderful! I rarely get sick, I am so lucky!!!! But you ask, if you're not sick, why in the hell have you been told that you need a lung tx?
B/c I have a low immunity, I am more suseptable to weird infections than others. The immune system and your lungs go hand in hand, much like your liver and pancreas, much like pop and chips, much like soap in a shower. They work together. If one is lacking, the other will most likely be affected too. If you recall, I had pneumonia at 2 days old. Pneumonia can wreck havoc to the lungs, especially in a little SCIDlet like me. I had a lot of chest infections as a kid, and that's when scarring in my lungs began. I always had to go in for PFTs (Pulmonary Functions Tests) to measure my lung functions and all that fun stuff. I had asthma and took medication for it, but it wasn't horrible asthma or anything.
Then, when I was 17, an uninvited guest by the name of H-Flu took up residence inside of my lungs and made me very sick, very fast. This was in 2002. I got sick right at the beginning of grade 11 and looking back, I went downhill very fast. Suddenly, little things like walking up the stairs left me breathless, and I developed a wet cough and would cough up green little gems. It happened so slowly but also so fast, (over a course of 6 months) that i didn't take notice until right before I got admitted into the hospital for it. I remember I sat with my mum in a little room when I found out they were admitting me. I hung my head and began to cry to my mum. "I'm sorry" i said. "Oh hunny, why?" and i cried and said, "I never meant for this to happen." I felt like it was my fault for not noticing sooner.
My lung function was down to the 30's (%) and they couldn't figure out why. I was in for 2 weeks and I think i fought with them every single day to let me out. I had a bronchoscopy (where they stick a tube that's got a camera on it) into my lungs to see how bad they were. A Bronch also allows them to take tissue samples and sample of the infection as well. I remember my doctor telling me it was "completely disgusting" inside of my lungs, and that I was growing a lot of other infections too. This is also when the biggest pain in the ass entered my life: the PEP Mask, aka PHYSIOTHERAPY.
The PEP Mask is a device that much resembles a bizarre sex toy to be perfectly honest. It's got a mask at one end, and a pressure valve on the other. You breathe into it and it creates 'positive' pressure in your lungs and allows you to cough up everything that's in your lungs. I remember one nurse trying to sympathize with me by telling me she had pneumonia once and had to do physio too, but only for a year. I wanted to strangle her and say, "That's nice, but I'll be doing this forever so shut up."
After much pleading they released me back into the world on March 9th, 2003. Ironically, this day the first case of SARS was reported. Luckily i fled the city and couldn't be considered a culprit, what with my fancy schmanzy new lung problem and all.
So what is it you've got, you ask? Well, many people have asked me, and still ask me if it's CF (Cystic Fibrosis); sorry to burst your bubble but it's not. HOWEVER, it is something so similar to CF that my current chest doctor (who is a CF specialist) told me you can line up every single similarity with CF and what I have and you would think they were the same thing. The difference between CF and what i have is that CF is genetic and affects more than the lungs (it affects the lungs, sinuses, digestive, and reproductive). CF causes mucus to excrete from almost any organ and clogs them up. My chest condition is called Bronchiectasis - yup, that's what it's called, and go ahead and laugh at the name b/c i'm pretty sure i laughed the first time I heard it too. In my case it is not genetic but caused as a result of years of infections. Bronchiectasis is the chronic inflammation of the bronchi and airways in your lungs, making it, the same way as CF, produce mucus all the time. This mucus is thick and sticky and extremely hard to evacuate from ur lungs. What happens when you can't get it out? Well, you get sick, and you develop bizarre infections that are hard to treat. These infections don't just come and then leave and never come back. They come back, and come back, and sometimes they never go away. The combination of the constant production of mucus as well as the constant infections damages the lungs in the form of scar tissue, which if you don't know, cannot be reversed. The scar tissue then blocks your airways and air sacs in your lungs and you lose lung function and will never get it back. In CF however, I must clarify, it is possibly to regain function. In bronchiectasis, you can't.
When they sent me home I got sick again a month later (i was told to expect this. I went on antibiotics and all was well, until Jan-Feb 2004 I got sick again, and idiot me, took the medication the wrong way and ended up resistant to the drug Biaxin. I was scheduled to go on a grad trip out east and guess who again, got sick? ME! ME! ME!. My doctor decided to put me on prednisone and a new antibiotic(abx) called Avalox. Avalox, i need to formally thank you and tell you I love you. If it was possibly to hug you, I would. Avalox took care of the infection for me, and prednisone got rid of the swelling in my airways and I felt back to my old self! YAY! I was able to go on my trip! The prednisone made me gain 10lbs on that 6 day trip and gave me terrible moon face. Needless to say, I don't look at any trip pictures after the first couple of days.
Since 2004 I have remained infection free. YAY! However, bronchiectasis is a progressive disease and unfortunately for me, the damage was done long ago. My current lung funtion is 27% (the highest it got after i got diagnosed with this was in the 40's (%) i believe). The mucus production is constant and I need a lung transplant.
Do not, for a second, feel bad for me! I did not write this for sympathy, or for pity, or for anything along those lines. I wrote this to share my story with others who are going through something similar (be it SCID, Bronchiectasis, CF, what have you), and to let them know that they are not the only one going through shit. Yes, it sucks, yes it's not fun, yes I do cry over it, but i could have it way worse than I do. You need to find humour in these things. I consider myself extremely fortunate to have the option of recieving a lung tx, b/c not many people are. Most people with bronchiectasis never get as bad as I am, and they have to live their life feeling really crappy. Would i want that? No. Do i want the oppourtunity to start anew and give back to those who have given to me? YES! More than anything.
I think my first start was beginning this blog and I am very happy that i did:) I hope you have enjoyed it thus far and aren't completely bored. Leave comments b/c i love them!!
Monday, July 9, 2007
Guess where I went today? If you guessed to the doctors then you're riiiiiiiight! I'll give you 2 gold stars for it and a cookie as a bonus.
So let's begin: I got 2 new prescriptions for Ventolin and Advair since I had 0 repeats for Ventolin and I’ve got 1 for Advair. She also wrote me a prescription for something called Zithromax which should help with the tightness I experience. It’s also an antibiotic. She wants me to just try it and see if it helps or not. If not, there’s no problem in discontinuing it.
I asked if there were smaller oxygen tanks available and she said most likely not, but it’s better for me to ask ProResp since they would have a better idea than she would. She said it’s not going to harm me if I don’t use O2 to exercise or anything, but it won’t benefit my either. It will take me that much longer to get things accomplished if i don't use O2 though...
She asked how my weight was and I mentioned I think I lost a bit this week but that it was most likely attributed to feeling nervous about the sleep lab, and that my appetite it back. She told me that when I go to my regular hospital this Thurs she may have one of the CPT nurses (chest physiotherapy) from the CF clinic to come down and try a Vest on me. A Vest is another mechanism that’s used in the States as opposed to a PEP mask. It’s literally a vest you put on and it vibrates and shakes so the mucus loosens up. If you ever got shot wearing that thing you wouldn't need to worry about it penetrating your skin. It takes the stress of forcing urself to cough everything up, away, thus decreasing the chance that you’ll vomit. I told her it’s only really an issue if I eat before physio or afterwards, b/c even after it’s done you cough for a good hour. She said that was ok then, but she’ll still send the woman down to see me. I said the PEP and hypertonic saline worked fine. Honestly, I know those Vests are really expensive and see no point in investing in one if I wouldn’t be using it for that long anyway. It's bad to say that but it's the truth!
Then I asked about setting up transplant evaluation. Before you can set up an evaluation you have to have a transplant assessment, where you meet with all the doctors who would be following you for the rest of your life. It’s pretty much like an interview that’s a couple of hours long, and you get a lot more information about transplant than you would anywhere else. She said it’s helpful to the patient and their family’s b/c it will help with the decision about whether to go through with it or not. I know I’ve already decided to go through it but I also know it will help ease my mind about things. The assessment is held so the doctors can determine whether or not you’d be a good candidate for a transplant. She said they would accept me. The assessment will help the docs lead to a decision about whether I need to be evaluated then, or to wait a bit longer. She said that they could feel that I’m currently too healthy and to come back in 6 months to see if things have progressed. Fair enough – that makes me feel better b/c it doesn’t make me feel like I’m racing against the clock. In the event that they do feel I need it, I will then be scheduled for transplant evaluation, and even then I could be considered too healthy and may be listed, but as inactive. Transplant evaluation is done at Toronto General and I would be an inpatient b/c it takes 5 days. She told me the assessment can be done at either Toronto General or via conference at the regular hospital i go to. I’d personally prefer to do it face to face so I can meet the people. So anywho, she will be sending a referral to TGH and I should hear back from them at some point.
So really, YES I DO NEED A TRANSPLANT but it’s not urgent, urgent, which makes me feel a lot better! I told her I would rather get the assessment and evaluation done sooner rather than later, and that I feel if I have gotten this worse since January w/o any infections, I don’t want to wait b/c who knows what, if anything, could happen. She actually smiled and said, “Completely understandable.” I think she likes me - finally!
As well, she gave me two things to give sputum samples in so the lab can see what, if any, gems i'm culturing. Yummy. I can take them to my regular doctor’s lab. She just wants updated samples since it’s been a couple of years since I’ve given her one, and it will also allow her to see if I’m culturing anything. It will also come in handy for the transplant evaluation. I’m glad this is under way b/c it will take a long time - blah.
So needless to say i left the appt quiet happy and not feeling nearly as desperate as I've felt the past couple of months. I rewarded myself with McDonalds. I was so preoccupied with my happy thoughts that I drove 7 streets passed the intersection I was supposed to turn at to get back to work, and when I finally got to work I sped into the parking lot, at the same time my boss sped out of her parking spot. We nearly drove into eachother. Luckily we didn't, and we just smiled at eachother and realized we were both equally at fault. Thank god for that!
That's it for the day my people. I hope this was informitive and that you generally understood what i was talking about!!
Over and out,
Sunday, July 8, 2007
I left at 8:40pm - I knew I'd end up being late, b/c I had to go to Shoppers to get some stuff before my official departure. Upon my drive to the lab, I got really really upset. I didn't cry, I just got angry. It was such a gorgeous night out - hot, humid, but not overly so. The kind of night where you can just lounge outside and not worry about it cooling off b/c you know it won't. The sun was a bright hot fireball in the sky, making it gorgeous shades of orange, red, peach and some purple. I wanted nothing more than to turn around and go home, and spend the night outside - or to be at the beach, watching the sun set.
But where was I going? Lucky little me was hauling ass to another city for an ultra fun, invite only, sleep over. This was not, and is not, how i pictured my summer. I had plans this year - and who knows if these plans would even fall through, the fact of the matter is they were things that I really wanted to do with my friends but I now can't. Things like going camping, and to the cottage and the beach (not just Emerald Lake, which is fun! but I'm talking Sauble people!) - as well as Canada's Wonderland!!!
But now, I can't:( I can't bring The Monster anywhere b/c it weighs 55lbs and as we know cottages up here, they're crappy but that's half the fun. I don't want to be liable for it breaking through the floor. I can't go to Wonderland b/c I don't have the lung capacity to navigate the park all day. I can't go camping b/c it would phyiscally destroy me. I have no energy for anything anymore. It has been zapped, and right along with it has gone my desire to do anything, and that really makes me mad. Hopefully next summer I will be better and back to my crazy self.
Anywho, enough of my mushiness and "this sucks!" rant. I'm going to shut up and bring you into the world I entered last night.
So i get to the sleep lab at 9:27pm. I sat in my car and wasted time. Eventually i got out and walked to the door, punched in the top secret number (009) and told the people i was there. About 3 minutes later the nurse man (b/c he was a nurse, but he was a man) came down and let me in.
"So you're on oxygen at night?" he asked. "How come?"
What a stupid fucking question, I thought. "B/c I have breathing problems. My oxygen sats get really low at night and I don't sleep well..." What did he expect me to say, "B/c i feel like it!". I shouldn't say bad things b/c he was really nice but still - stupid question!
He said, "ok."
I get to my room which looked very much like a hotel. I was impressed. They told me to fill out the form so I did. It asked questions like why I was there and a list of all my medications and stuff. The guy left and shut the door so I could put my jammies on. As soon as he shut the door I whipped my camera out and began taking pictures. Yes people - I got them! 21 in total!
Connie, the woman responsible for sticking the electrodes on, told me she had to get to some people before me b/c they were tired, and asked if it was ok if i let her attend to them first. I didn't have a problem with it so I let her. She told me the total length of time it takes when applying the electrodes is 30-40 minutes. When my time came she took me to a little room and sat me on some crappy orange metal chair. She swabbed me with alcohol. She scrubbed my head really hard and I asked her if it would take my hair colour out, since I had just gotten it done. She said no and that made me happy, even though she really was scrubbing my head to death. She then scrubbed my face and chin, part of my chest and my legs. She did my legs twice and discovered I had fake tanner on (don't tell anyone!) so now i have a huge strip of paleness on my legs with streaks on my feet. Thanx, Connie!!
She then explained what everything was for. What she said, I don't remember. She proceeded to glue, YES, GLUE, the electrodes to my head, face (under my eyes and middle of my forhead, and under my chin, behind me ears), chest, and legs. Once they are glued on she tapes them. I had wires everywhere. I sat there and I didn't smile. I felt like I was sitting in the electric chair. I couldn't stop coughing the entire time. Get ready for stupid question #2, b/c it's really dumb: I'm sitting there, coughing as I do, and she asked me in a monotone, "Do you have a cough?"
WHAT!?!? EXCUSE ME?! WHAT THE HELL DID YOU JUST ASK ME!?!! WOULD YOU LIKE A PRIZE FOR OFFICIALLY ASKING THE DUMBEST QUESTION EVER!?!?! AHH!!! Anyways....
When she finished she sent me off to my room. I went wild when she left. I took so many pictures of me rigged up b/c I wanted to make some memories, and I don't entirely know if taking pics was ok. I had a regular camera and an infrared attached to the ceiling. So far, no one has said anything...
So the night began and she ran some tests to see if everything worked which it did. But 10 minutes into my sleep she comes in and says something has moved, she fixes it, leaves, comes back and fixes it again. Blah blah, either way I was getting pissed off that she was messing up my results and I was going to do really bad on this sleep lab. It was bad enough I kept waking up from coughing.
At 2am she came in and asked if i was ok. I was in a deep sleep and she destroyed it. I said, "Yeah, how come?" and she said, "Your oxygen level dropped really low.." and i said, "Oh, it probably fell off..." which not to my surprise, it did. It was that moment i had an epiphany and realized that this was the real thing - i am really dependent on O2 at night and my lungs are really crapping out on me. Oh well.
Blah blah skip ahead 3 hours...MORNING TIME! WAKE THE HELL UP! DING DING DING! I wake up at 5:50 and she rips everything off me and sends me on my way. I am shocked at the amount of glue stuck on my head. She caked it on. When she ripped the tape off from under my eye she took some skin with it and i've got a nice little scratch. Again - thanx Connie!!
Ok so that's it for now. I'm sorry this wasn't more entertaining. I must add though, as yesterday was 07/07/07, guess what room number I was in?? #7! How weird eh!
Have a good day and enjoy this bizarre weather - wherever you are.
Saturday, July 7, 2007
What the hell could that possibly mean? People think it's a lucky day so i thought I would join the fun and write a blog today.
When I look back a year frm now what will i remember about this day of luck? That it was Live Earth Day all around the world, and people spent the day wasting energy by sitting their asses in front of the television, with their air conditioning cranked up, probably with all their computers on in the house. I hauled ass to the hair dressers which is within walking distance, to get my hair fixed up, since FRANSESCO THE HUNCHBACK ruined it last week by NOT listening to what i wanted.
I will mostly remember this day b/c I am spending it in the sleep lab. Yes yes, sleep lab here I come. Thankfull i am quite tired at the moment so I hope i get some sleep tonight. My sister assured me the beds will have to be uber comfortable.
I wonder if they've got Serta mattresses.....?
Friday, July 6, 2007
Upon spending time in the washroom, I realized that there are several problems here at work. I came to this conclusion when i walked out and realized that I can no longer use my prefered toilet here, since people feel the uncontrollable need to shit in it all the time. It's not one little shit here and there, it's like 4 times a day. I'm not lying. It's only reinforced by the fact that one time they shut the water off here at work (for maintenence or something) YET PEOPLE STILL CONTINUED TO SHIT! Yes, YES! HOW FRIGGING GROSS! For that reason I am incredibly weary everytime I step foot inside the bathroom.
Another thing I noticed is the badges we have to wear. Everybody's is faced out, meaning, when you look at their badge, you can see their photo and all their employee information on it. They even have the employee emblum on the clip! Mine? MINE FACES BACKWARDS ALL THE TIME! I am not lying. Everytime I look down at my badge, or I need to use it to get into the building, i have to flip it around and fumble with it. I guess they just don't want to see my face or something. The little plastic case it lives in isn't supposed to open up. You're not supposed to be able to take the little ID peice out of it. Mine? IT OPENS UP AND I CAN TAKE THE PEICE OUT OF IT - WHICH I HAVE! And guess what happened when I did it? 2 holes poped out of the top leaving it perminently open. My clip has no emblum on it to speak of. None. Nothing. Zero. Nada.
*sigh* I swear to god, some people!
October 30th, 2005
I sat with Karyn in her hospital room. She looked normal. She was just sitting there looking the way she did the last time I saw her. She looked beautiful. It was just us. Her in her bed, and me in a chair beside her. We talked for about 4 hours, about everything. We laughed really hard and spoke about all the stupid things we used to do. Then it grew serious.
She told me about the accident, details about it that only she knows and only the police know, but things I don't remember now. I think she told me just for the sake of letting it be heard, but not to be repeated. I saw things from the accident scene that I could have only ever imagined had I not been shown. They were so real.
Then she told me about the aneurysm. How much pain she was in because of it. She was in so, so much pain - so much so that she let me feel it and I seriously woke up with the worst headache I have ever experienced in my entire life. I cannot imagine what she had gone through. For me it was just a dream. For her, it really happened. It was how she died.
Then she turned to me and smiled. "I'm really happy now" she said. "So, so happy." and i could feel the happiness radiating from her. I could sense she was finally at peace. In all the months that passed after she died, when i would dream about her she was just so angry, like she didn't understand why she died and why she had to leave. But finally, she was happy and at peace. We continued to talk, but I don't remember about what. We hugged and it was so real. I honestly felt like she had been there with me, it was unbelievable.
I woke up and had a massive headache. I was incredibly upset that my dream had ended, and that it was infact a dream and not real. It truely felt like mere moments before, Karyn was with me and it was like old times again.
The night before, October 29th, I had gone to the cemetary to see her, but i didn't feel that she was there. I didn't stay long at all, but for some reason, before I left, i turned around and looked at her headstone.
The last thing I said before leaving was, "I'll see you in my dreams."