My Double Lung Transplant

Sunday, May 4, 2008

Crazy week ahead


Monday: Rehab @ TGH
Tues: Nothing
Weds: Pre-tx support group meeting at TGH, clinic?, rehab @ TGH
Thurs: Respirologist appt, nothing
Fri: Rehab at TGH
Sat: Go crazy

For the most part I am excited for this week. I am dreading Weds b/c in all honesty i DO NOT KNOW if i am supposed to go to clinic or not. I know it's been mentioned, but i simply do not know if i am to go or if someone will tell me that I have to go. If i have to go, where do i go? Who do I see? Maybe I should just go crazy? Maybe the world will explode. Who knows..?

Lastnight i had a dream that my pager went off. I also had a dream that my sister and her friend stole my desk and plotted to put it together in her room behind her bed so i wouldn't see, but I found it and called them out. I pleaded for them to give me my desk back, b/c i'd have nowhere to put my computer, and in the process my mum stole some stuff from my room and mounted garbage to the wall. I screamed that i needed a lung tx and yelled to the point that I lost my voice. They told me to be quiet or else someone might hear me.

Then, my pond in the backyard turned into a massive stream and I was in a small dingy boat floating around when i saw a frog on a lillypad. Upon closer inspection it was not a frog but a baby pig, doing summersaults under a leaf - and there were two of 'em.

I'm serious. This was my actual dream. It was not an acid trip.

Irregardless of all this mental-ness, i managed to sleep a solid 10 hours. And i'm still tired but what else is new. So yeah, tomorrow I need to haul ass and catch the 9:55 bus to TO. I will try to take some pics when i'm there. We drive by the CN Tower so we'll see what I can come up with.

Someone told me that I should make a list of things i want to do after tx, so I guess now is the perfect opportunity to do it:

1) LAUGH. Laugh out loud and laugh hard until my stomach hurts. Not have my stomach hurt b/c i've been coughing.
2) Dance again
3) Go camping
4) Go out with friends and dance the night away - not be the DD b/c i don't want to take a cab home b/c walking there isn't worth it
5) Run - maybe
6) Apply for my MA and maybe even get it?
8) GO TO THE BEACH AND SPEND ALL DAY IN THE WATER AND UTTERLY EXHAUST MYSELF. Not tire myself out b/c my lungs hate me; tire myself out b/c i CAN:)
9) Be active - go hiking?
10) Star in a monster movie - be among the ppl who spend the entire movie running away (like cloverfield)
11) BREATHE - b/c i caaaaaaaaaaaaaaaaan!:)

And that's my list for now.

Day 5 of being listed!!!


Matt Todd said...

I like your list of things to do after tx. I have my own running list in my head. If i can accomplish even half of the things i want to afterwards I will be happy.

Alice said...

Hey!!! Cool list!! You'll def get to do those things...For my next blog post I'm gonna tick off all the things I HAVE done on MY list! Your dream is facinating. I also get dreams like that. Although not so much as I used to. Maybe my brain gets more O2 now and is more sane... who knows

Kati and Charles Anderson said...

I came across your blog through another's, hope you don't mind. My daughter,Scarlet, was born last April and was soon after diagnosed with SCID-ADA. She was transplanted in September. Her donor was a man from Germany because Charlie and I of course were only 1/2 matched and she has no siblings. I read some of your older blogs on the SCID stuff and have to tell you that it was a great comfort to me to know that you made it as long as you have even after going through so much. I have been terrified of her getting the chicken pox so it is especially comforting to hear that you were exposed and survived. Scarlet has been battling CMV for nearly a year, that's been our greatest struggle through transplant, but she is doing really well. Please feel free to check out our site. I really hope you don't mind me reading your stuff. It helped a lot!