Going
through life in America, you become accustomed to being treated as a customer — expecting a certain baseline, small amount of respect and politeness. Not the
white glove treatment or the Ritz-Carlton, nothing fancy like that, just such
low-level niceties as "please" and "may I help you?" and a
general vibe that says, "thank you, please come again."
"Call
it the McDonald's standard," Steph once said. "Interactions with doctors,
nurses, and medical technicians should be at least as respectful as the kid selling
me a hamburger for lunch." And usually they were — but often they weren't,
especially at the kidney clinic.
The
UW Health Kidney Clinic is in a strip mall in Fitchburg, a suburb just south of
Madison. If you're on dialysis and on Stephanie's health plan, that's where you
go for treatment, blood tests, and all your kidney-related appointments. It
looks like any other medical clinic, except that all the patients have been
diagnosed with an incurable disease. Nobody gets good news at the kidney
clinic. You try to stay chipper and upbeat, but it's unavoidably a somber
place.
There's
no sugar-coating the awfulness of dialysis, so it was always remarkable to me
that Steph maintained such a positive attitude. I don't think she ever entered the
kidney clinic in a bad mood, but many times she was cranky by the time she left
the building. Many disgusting and disturbing things happened at the kidney
clinic. So many, it's not feasible to list them all in a single entry, so this
will be part one of a multi-part series.
Today,
we'll talk about appointments that were forgotten — not forgotten by Stephanie,
but forgotten by the kidney clinic.
Steph
was a well-organized woman, and when she got sick she (of course) developed a reliable,
workable system to track her many medications and medical appointments. She was
required to be at the kidney clinic at least three times per month while she
was on home dialysis, and later three times per week while she was on
hemodialysis, and she was never a no-show. In five years of dealing with the
kidney clinic, she called to cancel appointments twice, I think, maybe three
times, and only when she was feeling so poorly that she if she'd kept the
appointment she undoubtedly would've barfed or been incontinent.
But
during her first few years as an outpatient at the kidney clinic, there were at
least half a dozen occasions when Stephanie went to an appointment at the
kidney clinic, checked in at the front desk, and she was told that her name
wasn't on the schedule.
The
first time it happened, Steph blamed herself. "Guess I wrote the date down
wrong," she said, bewildered and apologetic. But Stephanie always had a very
scrupulous attention to detail, and her appointments were important to her, so
the idea that she'd gotten the date wrong seemed weird to both of us.
And
then, a few weeks later, it happened again. Steph had taken the afternoon off
from work, collected her notes on the questions she wanted to ask, and we'd
driven to the clinic in Fitchburg, but again we were told that Stephanie wasn't
scheduled for an appointment that day.
This
was circa 2014, well into the computer era, and the schedule was computerized at
every other medical office we visited, but not at the kidney clinic. Although
it's part of the sprawling and otherwise high-tech and fully-computerized
University of Wisconsin medical system, appointments at the kidney clinic were still
booked on paper, in a ledger-sized book at the front desk. There were no automated
reminders, and there was no logging into MyChart from home, to doublecheck scheduled
appointments.
So
after the second screwed-up appointment, Steph always asked for a card, listing
the date and time of our next appointment. We started repeating the dates and
times for every scheduled appointment, out loud, as the appointments were made.
"Thursday the third, at 10:30 A.M." And it was repeated back to us,
"Yes, Thursday the third, at 10:30." But when we arrived at 10:30 on
Thursday the third, the receptionist might frown, flip through her schedule,
and say again, "I'm sorry, but you're not scheduled for an appointment this
morning. I don't see any appointments for you until next week."
Usually,
there was no issue — we checked in at the front desk, and waited in the lobby
until Steph's name was called, same as any medical appointment you've had
anywhere. But once in a while, we'd walk in and they simply weren't expecting
Stephanie at all. Steph would pull the appointment card out of her wallet, and
the card said we were supposed to be there, but Steph's name wasn't on the
schedule.
We
began phoning in advance of every appointment, to doublecheck that the
appointment existed — and if we include the times we straightened things out
over the phone, the tally of forgotten appointments goes up from six to about
ten.
Have
you ever had an appointment forgotten by the staff, even once, at any doctor's
office anywhere? Neither had we, but at the kidney clinic it happened so often
we joked about it while driving to the clinic. "Hope we'll have an
appointment waiting for us." When it happens once, you shrug it off. When
it happens twice, and then again and again, you start to question the clinic's
general competence.
Of
course, every time an appointment was forgotten, everyone at the clinic was
very apologetic, and Steph and I never tried to make it into a big deal. Usually
they were able to squeeze her into the schedule, between other appointments, after
she'd waited a long time in the lobby. They continued occasionally forgetting
Stephanie's appointments, right up until about 2016, when the kidney clinic was
finally connected to the computerized scheduling system every other facility
used.
Maybe
all of this doesn't sound like much in the scale of modern-day frustrations, and
you know what? I think Steph would agree — having ten phantom appointments was
by far the least of her complaints about the kidney clinic.
Usually
visiting that place was just tedious, but sometimes the kidney clinic was
awful, sometimes infuriating, and sometimes downright dangerous. I've hesitated
to write about it, not sure I could fully convey the fear and frustration
Stephanie felt. If I describe every awful thing that happened there, accurately
and honestly, some of it will sound frankly unbelievable, Kafkaesque, or like
dialogue from One Flew Over the Cuckoo's Nest. But I owe it to Steph to
tell the truth, so I will swear, every word of it is true. Brace yourself.
Coming
soon: Kidney chronicles, part two.