Again, I'm not writing these for sympathy or anything, but for the sole purpose to chronicle memories b/c sometimes i'm simply too lazy to write this in my actual diary. As well, this is for anyone and everyone who's going through the same thing at this same moment, or wil in the furture, or who has gone through this (Rosie,Grant, Lindsey...you lucky shits you!)
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?