So today was my double whammy day: rehab at TGH at 9am, then zooming across the street to Sick Kids for my 11am appt.
Rehab was good. O'Intern didn't show up until 5 minutes before i left *pout* but we shared some extra special smiles so that was great. It's unfortunate that we couldn't spend more time in eachother's company (the way McIntern and i were able to last year), but when I left I made a point to announce as loudly as possibly that i would be there next week *wink wink, nudge nudge, aka SHOW THE FUCK UP*
Had a 6 minute walk. I walked 245 metres, as opposed to 300 back in March. I was gasping and sputtering all over the place like a dying fish by the end of it. I was seen by my co-ordinator and she asked how i was feeling. I told her that i don't feel any different and she asked if this was my new normal. I said yes, and she agreed that this is how i'll most likely be until my transplant comes. She said she was going to bump up my next clinic appt (which has now been moved from June 22, to May 25), and that they were seriously considering bumping my status up on the list, so that makes me happy!! I was glad that she was able to see me as I am now. I had just done leg weights and was gasping and shakey and it was really quite attractive.
Up next we went to Sick Kids across the street. Usually dad and I go out the Gerrard street exit, but as luck had it, it was blocked off and unavailable. We get there and I'm gasping and huffing all over the place, and the only choice we have is to take a maze pattern out to the emergency exit. So not only was i out of breath, i was gasping, i was hot, i was annoyed, i was irritable, and i was hungry. All i wanted to do was sit down, and there was not a damn spot for me to sit.
Finally we make it across to Sick Kids and to clinic. I threw myself down on the spongey green seat and threw my health card on the table. I was in no mood for 'hi how are ya's' at the moment. I wanted to sprawl on the ground and pass out. I did not care.
Eventually i gathered my wits, sanity, and manners and spoke pleasantly to my nurses and everyone. All were happy to see me and lots of catching up was done. I was generally happy to see them as well, though I was hungry, and I knew it would be at least another hour and a half until food was located and consumed. I tried to be patient.
Sometime later a grumpy ("I'm not grumpy I'm just worried. Am I not allowed to be worried?" "Not if you're going to act like a Grinch about it, no") dad and I were whisked away by a student doctor to the back. There she asked questions, took notes, felt me, prodded, listened to the lungs, heart, you name it. At one point she pointed out that i was shakey. I said it's a recent phenom strictly isolated to the philanges. She asked if i felt weak. I lied and said no. She asked if i had an echo recently. I said i get them routinely. Hopefully that ends the heart inquiries. All i wanted was food!
She left. Dad and I waited. I asked dad why he was such a grump again. He said he wasn't a grump, but that he was worried. I said that if his way of expressing worry was to act grumpy than he should keep it to himself, b/c it makes me feel bad and like i don't want to tell him anything. He huffed again. I suggested that he talk to someone about how he felt. He acted offended. He huffed a third time like a magic dragon, but he saw my point.
"Am i not allowed to worry?"
"Yes you are. I'm not going anywhere though so don't worry. These are the cards I was dealt. I can't do anything about it"
*insert huff with fire*
Pretty soon the doc came in, a doc who had seen me as a baby and adored my parents. He asked if my mum was behaving, and inquired about my recent hospital stay. He asked if there had been any male nurses for me and i said no, that i had been placed in a geriatric hospital and was the only patient under the age of 70. My dad shot me a look like i was rude, but the docs all laughed anyways.
I was able to show off my wonderful display of bruises and pushed the idea of a port or picc placement. They are finally seeing and agreeing that these veins weren't made for walking, that blowing's what they'll do...That one of these days these veins are gonna blow all over you.
So yea, the idea to save my arms and time is going to be discussed. Hurray! I said that i've had so much blood taken lately, that it's only fair. And i said it knowing that they'd take a heaping amount today. And they did.
I went to the blood lab after the appt and waited 30 minutes. It felt like a cattle recall, with everyone taking a number and waiting inhumanely in the back. I was #41. When i got there they were on #30. I was starving; my stomach was eating itself alive and i felt shakey and disoriented since, by this point, it was 12:30 and i hadn't eaten since 6:30. Ugh. Finally the lady screamed, "NUMBER FORTY-ONE!!!!" and i was ushered into the little curtained corner. I hoped it would've been fast...I really did....
I waited. And waited. And waited. I sighed, and acted as impatient as possible. And then, the student blood taker came in....
Holy fuck, a student blood taker, on me?? I was laughing in my head i was so distraught at the idea. Admittedly, he was a nice kid, but jesus god did he take his sweet time getting the vials out - all 12 of them. I sat there in disbeleif. Of all the days i was starving to death and envisioning devouring a Whopper it was now, and i had no choice but to wait while they went through what each colour checked, how many i needed, and if you had to do anything special to the vial after it was filled (like shake it), or how much to fill it. There were big vials, small vials, medium vials....it was a rainbow, but the only colour i saw was hunger.
He sat down and smiled at me. I smiled at him. "I have very bad veins" i informed him. He reamed the tourniquette as hard as possible on my arm and smiled. I made a face. I was polite enough to direct them to where they'd find a sufficient enough vein to fulfill their demand if they'd only remove the tourniquette before it severed my arm off above my elbow. They did not oblige me. I made another face indicating that I was in intense pain. They did not care.
Instead of using the big ice pick needles that my local blood taking place enjoys using so much, Sick Kids uses those small, sharp nastly little bastards that hurt just as much. They got the needle in in one go ("this vein is spongey and bouncy" the lady informed her student), and i lived through every waking minute and the blood was torturously let out of me.
All 12 vials of it. By the end my vein and arm were on fire. All i wanted was food. I wanted Burger King, and I wanted it badly.
Suffice to say, i was finally released and stumbled to the foodcourt with my dad. I plopped down on a chair and my dad waited in line and got lunch for me. It was the longest wait for food ever it felt. Finally, after what felt like an eternity, the food arrived.
I destroyed that whopper. To say that i ate like a savage and i just didn't care is a gross understatement. Anyone who knows me, knows that i'm the slowest eater in the world, and i took on this Whopper in 4 minutes and it was gone. That, and the fries. Why i didn't consume the bag and the napkins with it remains in question, since i could've.In an unfortunate turn of events -still being hungry- i was waiting at the vending machine for my dad to bring the car around, and was getting a bag of doritos, when my coke fell off the chair it was resting on and spilled all over the floor:( It was full. I was gutted, but all i cared about was getting those doritos.
Hell knows no hunger like a woman who's had 12 vials of blood taken from her, people! It does not know! I became a monster; i saw nothing: no one but food and gluttony. I came home and devoured a chocolate chip muffin and a can of coke, and only now, as i lay on the couch, can i attest to the fact that i truely acted like a pig, but that i plain and simple do not care.
So that's it. Before i go I must make a sad announcement: I just received word that a friend of mine from TGH, Jason, has passed away. He received his double lung tx in July 2008 and was doing great until January of this year, when he took a mysterious turn for the worst. To say I am shocked by his loss is an understatement. Jason was a rockstar and will be greatly missed. He was an inspiration to many and I cannot beleive he is gone. He is in a better place with Kyle and Robert now, who both lost their battles to CF in the winter.
RIP Jason: gone well before your time. You were a rockstar and you are missed. Your family is in my thoughts and prayers. I can only hope you are in a place where suffering is not a factor, and you're running free with your dearest friends.
Breathe Easy, Jason.