We departed for T-Dot at about 6:10pm on Sunday, arriving around 7:30. NOT BAD CONSIDERING a)THE USUAL DRIVE TAKES BETWEEN AN HOUR AND A HALF TO TWO HOURS and b) THERE WAS A "CRIPPLING SNOWSTORM".
We arrive, check our shit in, and make our way to the 16th floor where our room was. My dad hauled the Monster and I in my sweatpants hauled my suitcase with wheels and other stuff. Our room was small but what did we care...all we were doing was sleeping and shitting in it.
My bed's the rumpled one on the farthest part of the pic. Every morning we walked 5 minutes up to the hospital (which was 15 minutes if you're me). The first day consisted of 12 viles of blood, plenty of urine samples (the first thing i said to the lab tech was 'happy birthday' when i dropped my giant orange urine container off) a chest x-ray, ECG (heart thingy) meeting with a social worker, and VQ Scan.
I honestly thought the VQ (Ventilation Perfusion scan) would kill me. At one point I actually thought I died during it. They dangle this thing from the machine and you put it in your mouth while inhaling a vapour that appears in your lungs. This is done so that the docs can see how your lungs work and if they're good or shitty. I peeked at mine and the upper and middle sections were white and the bottoms were black. That can mean that they are working or not - depending on if the contrast is opposite(generally, white would indicate functioning lung tissue - black would mean it didn't. But sometimes, white can mean and absence of function and black can mean function. Compredre? Good).
So there I lay, like a crumpled goddess feeling like I was going to die as the technician kept telling me how much time I had left. Initially it started off as "3 minutes" which 3 minutes later was bumped to "4 and a half". This is when I believe I died. Anyways, it soon ended and I was free to go. Day was finished. Time to saunter back to the hotel and do nothing b/c I'm lazy.
DAY 2 consisted of an Echo (ultra sound of the heart), meeting with the transplant co-ordinater, PFTs and ABGs, and a CT Thorax. This was probably the worst day. It was tedious and painful. The echo was fine but was the first day of many where I spent half of without a shirt on b/c they stick crap to you. It of course was a male nurse (yippee) who echoed my heart. It was honestly good and he couldn't have been nicer. Up next was a meeting with the transplant co-ordinater. These people put together your transplant pretty much and monitor you. She was nice but not overly so - which I beleive is due to the fact that it's probably ill-advised to give away any potential indicators to patients as to whether they could be listed or not. She was fairly neutral but kept saying things that hinted to me like i most likely will be listed (fingers crossed! cross 'em damnitt!). She gave me booklet upon booklet to read which honestly help tons b/c they are so informative. She also gave me a Lung Transplant Manual which officially welcomes me to Transplant Land. How thoughtful....
After this was PFTs(breathing test) and ABGs (blood gas - blood taken through an artery). Surprisingly, my PFTs were up from 29% to 34%. THAT IS NOT A LOT. Anything within a 10% dip or increase is not considered anything really. A lot of it depends on weather and how you're feeling overall. I was slightly disheartened though b/c i was worried it would change their minds about transplant and tell me I'm too healthy. I was really distraught honestly but have decided to change my mind and am choosing to feel positive and that they WILL list me.
After the PFTs was the ABG and let me just say this: HOLY FUCKING OUCH! I had the misfortune of having one before and it hurt. This one was no better. They take blood from an ARTERY in your WRIST. First they feel for a pulse. I was informed that my pulse was weak (again - think back to dying during the VQ scan a few days before) which meant the artery was deep which essentially= WE HAVE TO DIG AROUND. The needle was the biggest thing i've ever seen. They dug and dug, and felt and and felt around and finally, after I was informed there'd be no numbing cream (yay) they went for it.
It's the worst feeling ever. It feels like a sharp object separating your wrist bones and slashing through tissue. You feel it in your stomach - like being punched. It's awful and it just gets worse. I made a face and it took every facial muscle and every ounce of eyeball strength to squeeze my tears in. My first instinct was to cry b/c it hurt so much. I tried to be brave but I think they knew I would cry so i sat there and said nothing. Touching it really hurts and the nurse had to keep pressure on it to keep it from bruising. Honestly, I wouldn't mind a little bruise: it would show people that it fucking hurts and to never do it to me again.
Following this traumatic, scarring, and painful experience was a CT scan. It was short and sweet but again involved the removal of clothing.
DAY 3 was a MUGA scan. Again, removal of clothing. It takes pics of your heart as you like there like a troll and eventually you peddle on a bike. It was really boring and tiring. I met with the anesthesiologist afterwards and she told me all about the surgery. My dad had a lot of questions. She probably thought he was weird. After this I went to the lab to be drained of more blood.
TODAY I met with the research person and filled in an online study thing. I met with the dietician and was informed my weight is perfect (even though I feel like a whale) and that I shouldn't gain or lose any more. After this I went for a 6 minute walk which was stressful. I had to do it twice b/c the physio lady didn't feel I put in my best effort. She didn't beleive I understood what she was asking of me. I beleive I did. So i had to walk the hall for 6 minutes in my 'best effort' and did a lot better. I feel I deserve a gold star.
So, in the event that i DO get listed - which i won't find out till the middle of January - I will most likely need to take a leave from school. This is b/c I will have to attend physio at the hospital 3 times a week for the first month. After the first month, I can transfer 2 of those days locally, and the 3rd day must be done at the hosp. This will require me to commute via Greyhound (God forbid I drive) 2-3 times a week. Yay. THIS IS MANDATORY. I found out my blood type too. Apparently, I've been living a lie. My mother told me I was one type when infact, I am not. Finding this out was much like finding out I had a child somewhere that I never knew about:
"WHAT?!"
"Yeah...you're not this type..."
"Seriously? No. You're lying. My mother told me I was a different blood type. Mum's don't lie..."
"Well she's wrong. You're completely different."
And i sat there in disbelief much like someone finding out the most bizarre thing ever.The average wait for my blood type, I found out, is 3-4 months. WOW. So that was nice! Also, my dad and i DID go to the ROM and I will try to put up some pics!
Sorry this was so long. But i know you were waiting! These are only 2 of about 102 pics - that's too many to post. This is the T-Rex and my beloved Mammoth. OMG!
Enjoy!:)
1 comment:
Hello, my name is Jeff, my sister gave me a kidney Oct. 26th. Anyway I found this link on TX Buddies, I am one, usually on the kidney/panc side. I just wanted to say, I love your writing style, it is very interesting and funny too, Hopefully you will get listed soon. I am the 3rd tx patient in my family, my dad got a kidney 7 years ago, and my stepmother got a single lung about 20 months ago, she was very sick and had 3 or 4 dry runs before she finally got her lung. I tell you, theres' some crazy shit we have to endure to get the procedures, but when it is all said and done, it is really worth it. That all being said, living in Indiana I have one request for you. Please keep your Canadien weather up there this winter, I loathe snow and cold...lol
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