My eyes are special, well at least my left optic
nerve is. Over 20 years ago, I had an episode of papilledema (inflammation
of the optic nerve at the rear part of the eye), that led to the discovery of
my brain tumor, and then to a suspicion of NF1. Because of this history, I have
an annual eye exam with a neuro-ophthalmologist that includes visual fields
testing and the occasional MRI.
I’ve written about my eyes (The Medical Mystery Tour) and in that
post, I wrote about my previous eye doctor telling me I needed more care than
he could provide, I needed a Neuro-ophthalmologist. He kicked me up the food
chain to the Big City Medicine doctors at Hopkins. Last year my experience was
fabulous. Well, what a difference a year makes! The following is a recant of my
less than stellar experience with The Johns Hopkins Wilmer Eye Institute.
Creating
the Illusion of Efficiency
I made the appointment a few months ago. A week
prior, I received a text message to confirm. A few days later, I received an
e-mail instructing me to log in to the patient portal and complete my check-in.
Damn! Sure seemed as if they were ready for me! Like a good patient I complied,
lest they follow through on their threats of taking my first-born or a vital
organ if I failed to complete my patient questionnaire, cancelled in less than
24 hours, or god forbid was a ‘No-Show’.
Hurry
Up and Wait
I breezed in at 11:18 for an 11:20 appointment. I
thought I had given my self oodles of time but was stymied by an accident on I-97,
curses! I apologized for not being there 10 minutes early as instructed (I
truly hate being late.) The receptionist smiled, said, “No worries, they’ll
call you when they’re ready.” I found a seat in the waiting room at exactly
11:20, whew!
Thirty minutes ticked by before the tech came to
get me for the pre-exam. I wondered if I was being punished for being exactly
on time. Cover your left eye; cover your right eye, blah, blah, blah! When we
finished, I was told to have a seat in the dreaded ‘second waiting area.’ Eventually,
another tech came to get me for the visual fields test, after which she dilated
my eyes and sent me back to purgatory.
…And
Wait
The waiting area saw a steady stream of patients
in and out. Every time a scrub clad employee walked in, my hopes were dashed as
fast as they had been raised. No one ever called my name. And not one staff
member offered any explanation as to why the delay with my doctor. I admit I
didn’t ask anyone either. My eyes were dilated, I could barely fucking see, my
day was shot; resistance at this point was futile.
As the TV pumped out a steady stream of mind
numbing HGTV, an older couple bickered over which career came first for the
Property Brothers. The wife insisted they are actors. The husband was
fascinated by his wife’s assertion, could it be true they were actors that
became real estate agents? He decided his wife was wrong, the brothers had to
be agents first and became actors later. Either way, the wife concluded, “it’s
all fake garbage."
Two hours of remodeling mayhem later, my doctor
finally popped her head into the waiting area looking for me. She thanked me
for my patience, said she gotten behind this morning. I told her, “Being
patient doesn’t mean I’m not irritated.” I explained having your eyes dilated
kind of screws your whole day, I wasn’t going anywhere.
Everything
Suffers
My eyes were examined, I was told my preliminary
testing indicated all was stable, and I could come back in a year. I was done in
less than ten minutes. I got the sense my doctor felt more defeated by the
delay than I did, almost as if she wasn’t fully present with me. How could she
have been? She was almost 2 hours behind schedule! I suffered, my care
suffered, my doctor suffered, and every patient of hers after the event that
balled everything up suffered. How is this quality care?
Health
Care Is Broken
At every turn, preventative medicine is shoved
down our throats, skin cancer screenings, glaucoma screenings, colonoscopies,
dental cleanings and x-rays, etc. The message is: “Get it checked out before
it’s too late!” Well, that’s all good in theory but the reality is; doctor’s
appointments are a huge investment of time, energy, and money. I will gladly spend
two and half hours on my health, but when I know an appointment (on a good day)
could have been completed in half the time, I get cranky.
My neuro-ophthalmologist isn’t my only doctor. I
go through this kind of crap at least once a month with other healthcare
providers and you know what, I’m tapped out! I’m tempted to say fuck it and
never go back, unless I start going blind. But who am I kidding; I’ll be back
next year because my other options are not worth it.
I hear all the time about choice. Healthcare
systems claim you can go off where ever you want for care. Well, within reason.
Neuro-ophthalmologist doctors are not
a dime a dozen, the closest to me is 40 minutes away. I could choose to go out
of network but I’d pay a supreme premium; I can barely afford to stay in
network as it is (the price tag for my optic odyssey was $580.00; my patient
responsibility is $295.74!)
Inquiring
Minds
I’ve chilled out since this chain of events yet I
still have so many questions! Where in the morning did my doctor get backed up?
Did one of her patients have a medical emergency? Could her office have
called/texted me to let me know of the delay, to offer a chance to reschedule?
I mean, they texted me about every other damn thing. I wonder what my reaction
would have been if, once I arrived, they told me the doctor was two hours
behind? Would I have stayed? Probably not.
Is there even a protocol for such a massive delay?
I get it, shit happens. No one can predict how their day will unfold. For a
doctor’s office, I feel there should be some kind of contingency plan. I wonder
if the front of the house had any idea of the mess going on in the back of the
house with my doctor. I almost hope they were clueless; at least there would be
an excuse for their silence. Rather than the alternative which is, they just
don’t give a shit.
