It’s Monday morning and the IV room is filled with sleepy people in warm blankets. I have the urge to put a mirror under the old lady’s mouth in front of me because she looks like the crypt keeper but maybe she’s just really tired.
I feel like I should continue my story in chronological order but my memories from that week are sporadic, chemically altered and most likely imaginary. My lovely and dutiful sister Lauren is coming up today to spend the week with me. She was the one who stayed at the hospital all night with mom, stalking the dark halls and flagging down nurses for updates. My dear bleeding heart sister is a very sensitive girl and is easily traumatized; just ask her about the time she gave me a bleeding nose on the neighbour’s trampoline when we were kids. She is still haunted by it, but she saw me being wheeled from the OR, all pale and hands curled up and I am told that she had an epic panic attack the first time she saw me in ICU. Always trying to steal my thunder, that one…
Oh right, my point is that Lauren took a very vigilant journal of what went on in those fuzzy days. She wrote everything down; things that happened, how I looked, funny things that were said, right down to what movie was playing on TV when I woke up after surgery (Crocodile Dundee 2, I believe). I want to give it a read to jog my drug-addled memory.
I just remembered that I packed my IPOD today. Thank god. I really feel for nurses, some folks just can’t get enough of talking about their health problems to strangers. I actually packed my IPOD so that I could ignore the physio student who is forced to follow me around at the gym. He’s lovely but I can be trusted to count to 10 three times by myself. Plus, I don’t give a shit about baseball so we don’t have much to talk about and I spend most of my time saying things to make him feel uncomfortable for my own amusement.
Today’s topic is what life is like in week five. It’s been a month since I have been breathing with my new lungs. I am still getting used to them, we are still in the process of getting to know each other. As excited as the promise of this new life is, the process has also been a mourning period for me. I’ve never been defined by my CF, I have always been one to feel like it’s better to be sick in private and never really let people watch me do meds or physio before, but when you grow up with chronic illness, you really learn to know and understand your body. I woke up after surgery covered in gauze and tape and stitched and staples with tubes sticking out of every direction. It wasn’t a body I recognized and am still struggling to understand. My old body and I, despite my mutinous lungs, were well in-tuned and had a certain rhythm. The cough, the goo, all of my old trademarks are now gone (although I hear that my famous sleep moaning remains to a certain extent, so I'm excited about that).
I am also mourning my scar-free body. The one genetic blessing I was endowed with was being a skinny girl with big knockers. On my first two dry runs I got the ONE surgeon who performs the surgery with the sternal (vertical) incision. I wanted what is known in the medical community as the CLAM SHELL. They basically cut you right under your breasts, so, theoretically, with enough vitamin E and a wide enough band, I could still wear a bikini. Unless I get all fat from all the delicious fried foods I've been eating... (I apologize for the inappropriateness of this paragraph.) But Dr. Ken Stewart gave me my transplant dream, my scar allows me to keep living life as a secret sick person.
I was lucky enough to keep transplant-related diabetes at bay (it's common for transplant patients and even moreso for CF patients to develop diabetes for short term or ever), so that makes me very happy because I'm still working on that lifetime supply of Fun Dip my sister gave me last Christmas.
IPOD just paid off, Lady Random Talker just sucked my mother in. HAHAHAHAHA. Apparently she was trying to get my attention by saying "Hello? Hello? (my mother's back is to her) Is your daughter blogging?" Just looking for an in to find out what is wrong with me so she has an excuse to talk about yourself. Seriously, you know you're going to be there for a while, bring some busywork...
I haven’t made an exact count of my new pill regiment but if I had to estimate, I would say I take about 4 trillion pills a day. Or not. I’ll count during physio when I’m tearing it up on the treadmill and get back to you. I counted this evening, I take 40 pills a day plus one to sleep plus two inhaled treatments per day. I should be dropping that number by one tomorrow. Hopefully that also lessens my ravenous appetite and chubby cheeks...
So new body is being regulated by a whole smack of pills for blood pressure, anti-ulcers, anti-rejections, anti-fungals, antibiotics, stomach motility, sleeping, there are steroids, vitamins, supplements – thankfully they have stopped feeding me all those friggen laxatives and water pills and general potty area pills – those were not fun weeks. I have officially resigned my body to Western Medicine, my dreams of being a healthy organic (yet well groomed) hippie with a toxin-free body are long dead. I’m all toxin, baby. Things will get better in time. One month in, I'm always hungry, my hands shake from time to time, deep sleep only comes chemically and my cheeks are a bit chubby. But hey, no more hiding my tubeface from the world...
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