Pulmonary Rehab Day 31.
My life is not my own. My days have become full of some
medically-centered person's life that I barely recognize as being my
existence. I can't image trying to fit anything resembling paying work
into this. Instead of a thematic post, here's simply how today's
schedule worked out.
7:00 wake up, drag self into bathroom, stare into mirror and mentally sing Adam Sandler's "What The Hell Happened To Me?"
7:15 protect accessed port with Aquaguard and duct tape. Note that the
access and dressing job that took place last night is horrible. Nurse M
is a complete hack. It is not comfortable and looks bad. Suspect this
isn't going to last.
7:25 shower finished; dressing mercifully dry underneath the protection. Finish up in bathroom.
7:30 Pound down nutritional supplement and breakfast.
7:45 An hour of Vest and nebulizer therapy w/ concurrent pipercillin infusion.
8:45 start vancomycin infusion; leave for hospital
8:50 get a text from Piper that she's got a call from Columbia!
9:00 order two coffees and a toasted cinnamon-raisen bagel w/ veggie cream cheese
9:15 visit w/ Denise on 7800. Discover I was handed donut holes instead
of bagel. Shit. Drink coffee, chat, pass the time. Highlight of my
day. We get another text from Piper that its a go and she's headed for
the air ambulance to go to NY.
10:45 leave for rehab
class w/ Carl, who should probably be drilling Marines at bootcamp.
Port hurts now. Strained somehow through this simple exertion.
12:15 weights and lunges and ball squats oh my. Lots of resting. Can't
get my breathing under control even though oxygen sats are fine. It's
the CO2 building up, you see. No problem; I've got all day. Port hurts
more. Probably should've gone light on the weights? (it was an arms
1:00 Force myself to get on the torture-cycle. 20 decent
minutes, though not as good a performance as yesterday. Ten minutes
1:30 start my 20-minute walk. Rehab is a relative ghost
town. Having forgotten my headphone, my thoughts are all tumbled in
themselves. Miss my friends. Wish Denise were feeling better; and
hoping against hope that Piper's day turns into an amazing night and she
wakes up tomorrow with a new lung.
2:10 leave rehab
up for a few minutes in the Hardee's parking lot with my nutritional
supplement and some hot ham-n-cheeses. Trying to clear my head and calm
my tits. Gotta keep my shit together. Realize how bizarre this all is,
but that for just this moment, with NPR on the radio and food in hand, I
feel normal again. I hear this great line in a story about a drug
"The only thing you have to change is everything." I'd say that fairly applies to my situation as well.
3:00 naptime. Port really hurts. What the hell?
4:00 Call UNC, talk to Dr Randell, get wheels turning to eventually send my old CF lungs to UNC for research purposes.
4:30 get a call from prescription lady at Duke
5:00 Notice the way my port is dressed has pressed the needle down and
to one side, actually tipping my port and the end where it attaches to
the central line is now trying to poke through my skin. Angrily remove
dressing and needle from my port and put a band-aid.
5:05 leave to swing by Duke and pick up a badly needed prescription
6:00 get rescreener call from Schlesinger associates setting up a one-hour interview in December
6:30 dinner. don't want to cook tonight, no appetite at all; too much anxiety. So I eat another breakfast.
7:30 an hour of Vest and nebulizer therapy; take Vanco out of fridge
8:30 shower and shave, since I'm deaccessed for the moment
8:45 use last needle and dressing kit to access myself because I can't trust the fucking nurses
9:00 Vancomycin infusion
10:00 Naked Vegas
11:30 Pipercillin infusion
12:05 sleep. I hope. And dream of an easier tomorrow.