Hey team – I just started my first run on hemodialysis at my
new part time job: Monday Wednesday Friday from 4-730. It’s the clinic I
wanted, where my nephrologist Dr Hall is the main dude, on 43rd and
Nicollet. The evening shift is quieter, the chairs on either side of me are
empty. I’m facing a set of windows looking south on Nicollet, so if you’re
driving north and seeing that bank of windows as you past the Frame-Ups, that’s
where I sit. This spot is above where my transplant center was for years and I have
a lot of memories of parking in the lot and dropping in for lab draws. I’m not
sure how to describe what it feels like to be upstairs.
I used to wonder at who was up here. When I would see the
clinic I was always grateful that I was going downstairs, grateful that I was
making a quick stop and not stuck in a chair for 3 hours. Now that I’m up here
… I don’t feel as despondent about it as I worried I might. Like so many of the
changes I’ve faced this is now the thing I’m doing. For a moment I felt like I
was living someone else’s life. When I was a kid, riding in the car, and
especially at night, I would wonder where the other cars were going. I would
picture myself in their car for a second, going the other direction in the
night. The lights on their dashboard, their destination in mind. Now I’m in one
of those clinics I used to drive by wondering who is inside.
I don’t know, I’m noticing again that it is a little
difficult to differentiate between what I’m feeling and what I think I ought to
be feeling. I don’t think I’ve encountered the hard part yet, at least it
doesn’t feel like it. To hook up to the machine I’m using the shoulder
catheter, so they don’t have to put needles in my arm (that will start next
week, hopefully), so sitting here doesn’t really feel like anything. Just that
I have to be here. So long as I’m cool with sitting here, it’s pretty easy. It
doesn’t feel like a confinement, at least not now.
Maybe I’m feeling alright because my hospital stay was a
little rough. Nothing too eventful, but I think I expected to be in better
shape, and to be more comfortable because I was going in relatively healthy
(not passing out) and only had a minor surgery. That part went pretty smoothly
– they placed the catheter in my left shoulder in about 15 minutes. Like the
graft placement, I was under conscious sedation and have some memories, and it
seemed to go pretty smoothly. When they placed the arm graft I could feel them
pushing and pulling on me, I could tell it was a bit rough. This one was fine.
I was in a neural unit briefly waiting for a bed on the nephrology unit, where
I moved in the early afternoon.
That afternoon I dialyzed for the first time. It seemed to
be in a different room from when I dialyzed in Abbott in 2003 after they
removed my Mom’s kidney, though it’s hard to know how much of that memory is
real. I remember sitting in a chair when the surgeons came in – I had gotten to
know these guys pretty well, they operated on me in November 2001 to put in my
Mom’s kidney, they we had consulted and they operated on me again that March,
the 17th I think. On a check-up they found a growth in the
transplanted kidney, a biopsy showed that it was a neural schwannoma, a nerve
tumor growing in the kidney. Of course, like so many other things, this was
unusual to the point of being unheard of. They tried to take out the tumor only
and save the other lobes of the kidney but were unable. They came in to deliver
that news while I was on dialysis. They came in kind of quiet, almost contrite.
For whatever reason I was absolutely unperturbed by this turn of events and my
memory is that I cheered them up. We chatted for a bit and they went on their
way. Being on a machine in Abbott this time around, I can recreate that memory,
though I like it the way it is. Incidentally, and I mentioned this before, the radiologist who performed that memorable
biopsy (he had to rebiopsy several times), performed another biopsy on my a
year or two ago. I mentioned that this biopsy was much smoother than another
one I had had years ago. He asked if it had been on a donated kidney from my
mom and remembered it. He said the lab kept asking from more samples because
they weren’t getting kidney tissue. Of course this was because he was
collecting samples of a huge tumor. I
love telling that story.
Anyway, this hospital stay was only about 36 hours – Tuesday
morning to Wednesday afternoon, though it felt a great deal longer, longer than
I expected it to. I think because I was out for a bit during surgery, and
because I did two runs of dialysis, it felt more like 4 days than a day and a
half. My shoulder was more sore than I expected, so sleeping was a little
tricky. Also my neighbor had some dementia and was a yeller. It was unsettling
at first, like a nightmare, to have this woman yelling for help next door to
me. Hospitals are kind of like an alternate universe. The reality of the room
and hallway and beeping blurs into TV shows and movies. This is compounded by a
lack of sleep, pain killers, feeling sick, etc. Mostly being there is fine,
boring, but I can’t help but perceive this undercurrent of panic. Occasionally
if a nurse is too busy to respond to a call right away, or if a woman is
screaming for help next door (!), I can feel the reality of the room and my
situation slip a bit and every possibility becomes real. It’s hard work, being
in a hospital.
Now that that’s over, the rest of the world doesn’t seem so
bad. I’m starting MITY on Monday with Ellie. This is our fifth year teaching
together and we can’t seem to both be on our feet. Last year I had just had my
second nephrectomy two weeks before we statred and she was pregnant. This year
she has a six month old and I’m doing this. We make a good team and I’m not worried
about it. I feel lucky to be there. I managed to finish the school year without
missing too much time (other than for that cold) and now I’m able to teach
again, having conveniently spent my two week break feeling sick as shit and
being in the hospital. That sounds whiney but I wouldn’t want to miss any more
school. I’m pleased with myself for the work I was able to finish this spring
term. I finished all of my courses at the U and St Thomas on time (barely) and
I have to finish up one more paper for a directed study that isn’t on any
timeline. I believe I’ve managed to live my life so far without too many
compromises or interruptions.
I’m not sure what dialysis will mean for my life this summer
and fall, though I’ve been eager to slow down after this past year and this
will certainly afford me lots of time for that. Ellie Dan and their munchkin
Simon live about two blocks from here, and there’s a great burger place on this
block – The Lowbrow. Maybe that will mean lots of post-dialysis burgers this
summer. My mom is here for a visit so I’ll wrap up. It’s not a great visiting
place and I’m not sure how to navigate that for friends / family quite yet but
I’ll keep you posted. As always I’m so grateful for the support you show by
reading the blog and the thoughts and well wishes. Thanks for reading!
Your strength is always an inspiration Kev. Makes me stronger in moments that I need to be in my own life too. Sending all the positive thoughts. ~avye
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