Blog post
March 1 7pm
Ok, I'm in the hospital, and I'm very,
very bored. Most of what goes on here is waiting... I left my
backpack, with most of my art supplies, back at the hostel. If I were feeling more docile, I would get a pen and paper and start doodling some art, but right now all of my energy is going into trying to understand what's going on and trying to communicate with family at home. This this
computer is a lifeline. I clutch at it desperately. It is my one
solid connection to home, help, resources, and easy English-Spanish
translation.
So yesterday, the clinic doctor took
one look at my eyeball situation and said, “This is an emergency,
you need to go to the hospital!” He actually spend a bunch of time
examining me, thinking I had a viral sins infection, before it
occurred to me to properly show off what's going on with my eyes.
Apparently it's not super noticeable to people unless I show it off.
This boggles my mind a bit, since when I look at myself in the
mirror, I have THE CRAZY EYES, and I can't imagine how someone
wouldn't notice that.
Anyways. EMERGENCY! So in the process
of calling the clinic doctor, the people at the hostel found out
(with shock!) that I have no insurance at all. One German woman who
had been helping translate was simply appalled. “Didn't Obama fix
that shit???” “Yes, but it doesn't go into full effect for
another year or two...” So we're all sitting around trying to
figure out how I'm gonna go to the hospital with no money. The
hospital definitely will not let me in knowing I have no way to pay
my bill. Absolutely not. I say, well, I have money, and I can have
a family member from the states pay my bill with a credit card for
me... But everyone feel very dubious that hospital will accept this
tenuous payment method. They say, only a physical credit card will
work to get me in... They were also somewhat shocked that I didn't at
least buy traveler's insurance, but that is not something I've ever
been familiar with, so it didn't even occur to me to get it. Oh man,
though, next time I travel overseas... Def gonna get some.
So, as we are sitting around trying to
figure out how I can get some access to my money and get myself into
the hospital, things are looking more and more desperate. I'm
obviously starting to panic a little. Then Gloria, the mother of
Alegria (Alegria's Hostel), who happens to bet there covering for her
daughter... Gloria steps up BIGTIME.
She essentially says, “The doctor
says you need to go to the hospital, so you need to go. I will sign
for you and take responsibility to get you in. We'd just better make
sure to get ahold of your family so they can pay the bill...”
(imagine that being translated choppily through a dashing Argentine
man, also full of compassion). Gloria says, “I am going to help
you, you are not alone.”
At which point I promptly start crying,
obviously.
So, a cab is called, and we head off to
the hospital. It is an hour cab ride through thick traffic, and
Glaria and I attempt to chat with each other with her small amount of
English and my minute amount of Spanish. It is generally awkward.
It gets dark promptly at 6pm in Columbia, and night falls as weride
across town.
It is full dark when we arrive at the
hospital, but instead of going immediately inside, we wander around
the block a bit, Gloria desperately looking for a phone of some kind
to help me cal my father. It becomes obvious the she definitely
can not afford to cover my hospital bill, even temporarily, and she
is going waaay out on a limb
offering to sign me into the hospital. Eventually she gives up on
fining a phone and we walk into the hospital.
But
it's not easy to get in... Up until this point, the idea of the
hospital has been built up in my head as some epic fortress,
impenetrable only by the password of MONEY. But it does not at all
prepare me for the reality of the place. On the ride over, I observe
that we are obviously heading into a wealthier, fancier end of town.
The hospital itself is a massive building, exactly like any fancy
private hospital in the United States. Except that there are security
guards at every single door, and every door is controlled by a
keypass that only the security guards and select hospital staff have.
Most of the doctors, nurses, and administrators pass through doors
by knocking and waiting for the security guards to open it for them.
In fact, the security guards are three layers thick on the doors in
the ER... and the routinely radio descriptions of people passing
through the doors to the next check point that a person is heading
towards. If you've ever watched Firefly, it feels exactly like
entering the Alliance hospital on the center world Ariel...
Everything is gleaming white, with silver metal chrome, fancy glass
doors, and high-tech security and key cards.
I wonder...
presumably the intense security is meant to ward against the drug and
gang violence? I hear that Columbia has pretty good social
healthcare. But I also read a couple of articles about protests and
riots over healthcare access. Part of me wonders if the intense
security is partly for the purpose of keeping out the people who
can't afford the fees... I don't really know the politics here. I
only know that walking in is surreal.
Eventually Gloria
talks them into admitting me, how she did I don't really know... I
think it is a combination of the promise of my family helping pay,
and her signing responsibility for me (and my bill) on the paperwork.
We go in one layer
of security guard doors, then a second layer. Here is a check-in
desk, another high-tech door and security guard. We wait for the
triage doctor to call my name and see me.
The triage doctor
is a tall, goofy, friendly guy. He speaks reasonable English and is
exceedingly amused by how tall I am. He even wants to stand side by
side and have Gloria tell me if I am taller than him. Apparently I
am slightly taller than him, which he is delighted by. I endure this
bullshit while trying not to encourage him. The he starts the
examination. He is a little more handsy than most Columbians.
In general,
Columbians are pretty touchy-feely – many of the hospital staff
unabashedly touched me in casual passing, or to be comforting, in
ways that would never be considered appropriate in the US. Mostly I
find this a pleasant and refreshing change from the touch-starved US
culture. But this triage doctor definitely goes beyond normal
friendliness.
Handsy Triage Doc
says he wants to have the neurologist see me. Gloria and I go back
out to the waiting room again, and wait another 20 minutes at least.
When the triage doc comes to see me, he takes a look at me, does lots
of neurological tests... and says he thinks he needs to admit me and
I need an MRI scan (which the call TAC). At this point, I am still
so tired and dizzy that I can't really argue or advocate for myself.
So, I go with a nurse, and she shows me to a room on the emergency
floor. The room has three walls, with the fourth wall opening
directly into the hallway, covered by a curtain. The nurse tells me
to take my shirt off and put the hospital gown on, but I get to keep
my pants on (small victories)! She then installs an IV port on the
inside of my left elbow, which they apparently need for the MRI.
Then the nurse leaves, and we wait. And wait. No more information.
No one comes to give us an update on when the MRI will be... I pull
out my computer and work on getting it connected to the wireless in
the hospital. Soon Gloria realize that it is very late! She goes
and asks the doctors what's going on...
Oh, Gloria. She is
amazing. She has sort of adopted me. It was very comforting to have
someone with me, caring about me and keeping me company. On the
other hand, in retrospect, I'm not sure going to the ER was useful in
any way. What I really mostly needed was rest and food. The thing
with my eyes definitely needed to be checked out by a neurologist,
but I don't think it was ever an emergency. But when you're
desperately clutching the mattress, hoping that the world will stop
spinning, and the neighborhood doc says “Go to the ER”, it's hard
to ignore.
Even though Gloria
speaks fluent Spanish, she didn't seem able to get very good or
reliable information from of the hospital staff – even accounting
for the language barrier, her info was often just wrong. But maybe
it wasn't her, because I often got conflicting information from
different hospital staff. To get good information, I had to ask them
to send me someone who speaks English, or walk up to the nursing desk
with my computer and use Google Translator, and then I had to grill
them and cross-reference the information given to me by other staff.
This, I find, is the most annoying part about hospitals (an
experience I have also observed in US...). Everyone is so busy... so
busy the don't have time to answer your questions, or comfort you, or
to sit and carefully explain things to make sure everything is really
understood. No one has time to care about the specific narrative of
an individual patient, because they all have too many patients, which
they're constantly trying to juggle. Which is funny, because as the
patient, isn't it really supposed to be all about me? If you're
sick, and you're in a place where everyone is so busy that they don't
have time to take care of their patients' emotional needs and general
comfort, what the hell are they accomplishing? They are
accomplishing bullshit, that's what. No one came and asked me if I
had a toothbrush. No one cared whether or not I had brushed my
teeth. I brought mine with me, but by the time I got out of the MRI,
it was 12:30, and I was exhausted, so I just brushed them in bed
before falling into deep sleep.
I'm woken up at
some bullshit time like 7am - what they fuck, don't they have any
respect for a sick patient's need to get a full 8-9hrs of sleep???
One of the doctors from the neurological team is waking me up and
asking me all sorts of neurological assessment questions.
I spend the morning
intermittently waiting, trying desperately to contact my family at
home to check-in and discuss my situation, to receive support, and
reality check. The head neurologist comes and talks to me. He says,
I definitely do not have brain tumors. WELL, SUPER. But, he says,
we found white spots – lesions – at the back of your brain, and
these spots, along with your eye condition, are consistent with
Multiple Sclerosis symptoms... He won't say he thinks I have MS, he
only says it is a possibility, but it takes at least 3 months to get
a diagnosis. He also says, there is a treatment he can give me to
fix my eyes. It is a steroid treatment (that's about all he says).
He says he wants to admit me for 5 more days, do this treatment and
do more tests. I immediately balk. I say, before I will consent to
any of that, I want to know how much it will cost, and I want to talk
to my family. We negotiate a bit more, and I ask if I can do the
steroid treatment as an outpatient. He says, “uh, yeah, maybe...
let me talk to the nurses and administrators...” then he leaves.
More waiting is
interrupted by another team of neurologists asking me more of the
same questions, and testing my reflexes. At this point, I am
obviously upset, I am becoming increasingly overwhelmed, feeling
lost, alone, and not in control. I try hard to muster up the energy
to grill these doctors about what is going on. One of them speaks
very good English and seems to be the team leader, since he's
coaching a younger doc on her technique while looking at my eyeballs.
This doctor is tall and attractive in a sort of young, Latin George
Clooney sort of way. They talk vaguely about the steroid treatment,
and I still say I need to talk to my family before I decide what to
do.
Earlier, I had been
trying to figure out a way to call home, and I'd gone and asked the
nurses if there was any possibility that they had a set of computer
headphones with a speaker that I could use. The nurses could not
come up with anything.
I mention to the
three neurology doctors, that I could call my family with my
computer, if only I had some headphones with a microphone. George
Cloony doc perks up and pulls a set up Ipod headphones from his
pocket, and offers to let me borrow them. AH! Headphones! A
frigging lifeline! I immediately try to call my dad, but he is doing
something away form phones and internet, and I haven't been able to
get ahold of him since I went into the hospital. So I call my
sister. Which is amazing. Just hear the voices of someone I know
knows me and loves me is so comforting, I immediately start crying.
When finish crying well enough to talk, I tell my sister the whole
story. She is amazing moral support. At the point when I am talking
to her, I am thinking that I am going to stay in the hospital for the
steroids treatment... that's what the team supervisor doctor
convinces me of.
But then again,
sitting in my hospital bed for another couple hours, waiting for
something to happen, I feel more and more antsy about it. Ech. I do
a little research about steroid treatments for MS – this is the
standard treatment for MS episodes, but steroids are also HORRIBLE.
For this treatment, I have to stay in the hospital for three days to
receive massive doses of steroids intravenously. Also, steroids make
you depressed. So maybe it'll “fix” the thing with my eyes, but
then I'll be sent off on the rest of my tip with chemically induced
clinical depression. Frankly, that sounds waaay more unsafe than not
having good peripheral vision.
At some point I
also demanded a cost estimate for all of the tests and treatments
they wanted me to stay for. It comes back with a list of things
like, 5-day hospital stay, cost of room & care, drug treatments,
LUMBAR PUNCTURE (no one ever mentioned anything about that either...
they just said “tests”) and theotal cost is about $4,000. HOLY
EFFING SHIT.
'Round about 8pm, I
say “that's it”. I'm getting off this crazy train. Maybe I do
need the steroid treatments, but I'm not going to decide right
now, when I still feel powerless and overwhelmed and alone. I
demand to see the doctors, and I say I'm leaving. It takes another
three hours for me to actually get out of the hospital. In the
process of demanding to leave and demanding to talk to the docs, they
come back, full of concern for me... they say, “you really need
this treatment because we think you have MS”.
I say, “Really,
because the other doc earlier today said it was just a vague
possibility...”
One of the two
attending docs goes, “We think you have MS with 80% certainty.”
And I immediately
break down and start crying in their stupid faces, and I stare at
them accusingly and say, “NO ONE CAME TO TELL ME THAT. That is
big, scary, overwhelming deal. I sure as hell am not gonna stay here
now! I need to take a few days to talk to my family, and figure out
what I'm gonna do... I NEED TO LEAVE HERE.” They are genuinely
surprised that I don't wand to stay in the hospital for a giant chunk
of time, and receive scary treatments with tons of side affects, when
I just found out two seconds ago that they think I have a lifelong
debilitating and degenerative disease. They are surpised that I am
overwhelmed by all of this and need some time to think and understand
what's going on... they are surprised that I would want to do my own
research and to understand my condition and the treatment on a deeper
scientific level, instead of just blindly trusting their diagnosis.
They are surprised that I distrust the bureaucratic system in which I
feel powerless and want to get the hell outside of it to think.
After I broke down
though, they act appropriately reprimanded, try half-heartedly to
convince me that I will still need the steroid treatment, and they
act very concerned about wanting to know what I decide to do, and how
my case progresses even when I get back home. Then I have to wait
another few hours for them to write-up the narrative of my diagnosis,
because they want to give it to me before I leave. One of the docs
gives me his personal email and asks me to keep him updated.
Then it takes
another ordeal of trying to leave, because I don't have a credit card
to pay my bill with... The hospital's general policy is not to let
anyone leave without paying their bill... So I go to the cashier, and
carefully work through the process of explaining that I don't have a
plastic credit card, that my family in the US is helping me pay my
bill, and that it needs to be done over the internet. At that point,
the guy says, he doesn't know how to do an online payment, and we'll
have to wait 'till morning for the “chief”. Because their
general policy is not to let anyone leave without paying, they
require that I leave my passport with them and come back as early in
the morning as possible. I am pretty nervous about leaving my
passport, but this place seems like a big, impersonal enough
bureaucratic institution with super high security, so I allow them to
hold my passport hostage.
At this point, it's
like 11pm. I feel like a jerk, but I call Gloria. The hostel is a
$10 cab ride across town (and back again in the morning), while
Gloria had mentioned that her apartment was really close to the
hospital. I give her a call – it's late, but she's still barely
awake. I manage to communicate to her that I'm getting out of the
hospital right now, and I need to come back to the hospital very
early in the morning, and could I please come to her house? Once she
understands all of this, she is very welcoming. The cab ride to her
place is about $3 or $4 dollars, which is a huge relief.
March 2 8:30am
In the morning, I
get back to the hospital and start working on trying to pay my bill.
But it's one level of bullshit after another. There is a way to do a
credit card payment online, but it's complicated and finicky. I call
my sister, woke her up at 5:30am – which she was immensely kind and
patient and accommodating about. We spend probably an hour on the
phone, trying to make the internet transaction work, but it just
keeps getting rejected by the hospital system. At some point, a
young intern doctor comes to help me translate the the hospital admin
staff. I am progressively getting more and more frustrated, crying
off and on. I call my bank, and ask if they can do a direct wire
transfer to the hospital. They say they could, but not on the
weekend – I would have to do it on Monday. Then I call my dad (the
staff is letting me use a hospital phone to call the states), and I
finally get to talk to him, for the first time since all of this
craziness started (we've only been able to exchange emails so far).
Talking to my father on the phone, obviously the first thing I do is
break down crying, explaining what is currently happening. Dad is
great, he says, no, I will take care of all of this. If the hospital
will let you leave, I will take care of getting all of this done on
Monday. I communicate this to the intern doctor who is translating
for me. As a medical professional, he is increasingly concerned
about my health, and how this ordeal of trying to pay my bill is
affecting me (obviously badly).
At this point, I am
just telling him, yes, I can pay the bill, but I don't think it's
possible to do over the weekend. He tells me to go chill out in the
cafe next to the hospital for a 20 minutes, while he goes and
advocates for me with the hospital admin staff. 20 minures later, he
comes back, with the admin dude, saying, “OK, you can go... we
trust you.” Which is a huge relief. I realize that they are also
making Big Huge Exception for me, because of my situation. So with
my passport, I catch a cab back to La Candelaria, the neighborhood
where my hostel is.
Back at my hostel,
I'm just determined to chill out and rest, and work on exploring the
city. My vision is still sketchy, but it is starting to improve
significantly each day. By Sunday, I am way less clumsy and dizzy,
and I can easily navigate around town without getting super tired
just from trying to focus.
March 4
Monday morning, I
am woken up by Viviana, the woman who is running the hostel for
Alegria while Alegria is on vacation. She says she needs to make a
photocopy of my passport. I say fine, give it to her, and go back to
sleep (HOLY SHIT, this was a bad move. My passport is currently my
ONLY lifeline, for continuing my trip. It is my only way to get
around, and get money. It is my only ID. Never ever, for the rest
of my trip, shall I let it out of my immediate control...). Anyways,
I wake up a few hours later, (around 9), and ask Vivian for my
passport. She says that Gloria has it, that Gloria is running some
errands, and that I need to wait for Gloria to arrive. AGGGH. Okay,
so I'm just supposed to sit around and wait for her??? I spend the
morning going back and forth between calling the hospital's
International Services office, with staff who's job I believe is to
facilitate and translate for international patients (maybe they just
take care of Medical Tourists...). I make sure they are in contact
with my dad, I pester my dad with emails. Then I get a phone call
from Alegria. She says, “Hey, what's going on. My mom helped you
out, and now the hospital has frozen all of her accounts and her
credit card has been shut off.” OMG, seriously??? This turns out
to be a big fat lie (or just high melodrama). She just wanted to
light a fire under my ass to make sure and get the hospital bill
paid. The hospital did send a bill to Gloria's house, which royally
freaked her out. But I immediately call the hospital and grill the
International Services office about this, and they say it would not
at all be possible for them to do anything like that, because Gloria
never gave them any payment info. Anyways, 'round 1pm, Gloria
finally shows up. Turns out my passport was in the desk at the
hostel the whole time. She show me the bill that the hospital sent
her, wants to make sure that I'm actually working on paying it. She
says, “This isn't my problem, is it???” I say, “No, that's
just paper. It doesn't mean they expect you to pay. It's just
bureaucratic. And also, my dad is talking to Diana (international
services office at the hospital) right now, actively working
on getting it paid. She is much relieved, but she still wants to
make a photocopy of my passport, as general insurance for her. Yeah,
fine, I say. She's gonna walk tot the corner store, and at this
point, I'm not willing to let my passport out of my sight, so I walk
with her.
So most of the
morning, I am generally held hostage by language barriers,
miscommunication, and anxiety. BLAGH.
Anyways, turns out
it is impossible to get any kinds of online transaction, direct wire
transfer, or anything else to work. The backup plan is for dad to
send me a big giant cash wire transfer, I go pick it up, and take it
directly to the hospital. So we make sure to check on finding a
Western Union inside a bank, close to the hospital.
March 5
So that is my day
on Tuesday. I am done with taxi cabs. As a city kid, it is a point
of honor to navigate and use public transportation, even in a foreign
city where I don't speak the language. I stop by the house of a
friend I'd met off of couchsurfing.com over the weekend, and they
give me directions on how to get all the way up to the hospital by
bus. So I head out. Turns out the bus line they told me was
correct, but they told me to go to the wrong stop... (not really
their fault, the bus lines here are convoluted and routes get changed
regularly). So I spend an hour or so wandering around, stopping
random buses to ask if they go to “Foundation de Santa Fe
Hospital”? Finally a really nice guy hops off his bus and walks me
to the bus stop where I catch the right bus. I am inherently wary of
the dude's intentions, since there are an awful lots of dude who
heckle and harass women on the street here, but this guy is super
nice. He walks me to the street where he helps me catch the right
bus, then he walk back towards the street his bus line was one to
continue his own commute.
So, TRANSIT
ADVENTURE! OMG, it was thrilling. On the bus, I meet an American
woman named Dia. She has been living in Bogota for a year now,
teaching English. We have a nice chat, and she tells me about a good
Spanish school, should I decide to take classes.
I finally get to
the hospital, and get ahold of Diana (the international services
nurse). I ask her, please, where is the best Western Union closes to
the hospital. She tells me to take a cab (5min) to the mall nearby.
There is a WU inside a bank there. So I do (one more cab ride...).
The mall turns out to be an EPIC FORTRESS. Though I have no interest
in the mall itself, the trip turns out to be worth it just to observe
the incredible level of security surrounding it. Considering that
I'll be picking up and carrying a giant wad of cash, the security is
also a little re-assuring.
Back to the
hospital... I get there and pay-up. Done and done. Good lord,
considering how difficult this was, I'm not going back to the
hospital for anything unless I have my plastic credit card in my hand
and know that I can easily take care of things.
Before I go, I head
up to pay a visit to the neurology department. I want my MRI scans,
and the doctors had told me to get them anyways. So I check in with
neurology. One of their interns comes to help me translate with the
imaging department, and she is also texting the attending docs to see
if they are available to see me. They keep asking if I have an
appointment, and I say “No, they just told me to come if I came
back – they said I didn't need to make an appointment”. Anyways,
the team supervisor doc who was overseeing my case is not around, and
the attending docs are busy. After I get the CD of my MRI scans, I
go back to the neurology office, and I end up talking to the chief of
neurology.
The chief, Dr Edgar
Osuna, sits down and goes through my MRI scans with me. He shows me
the two spots in my brain that they found which look like MS. He
explains that a positive diagnosis requires the comparison of more
scans over time (like every 3 months or so for a year). I say, “
Why was your team to pushy about the steroid treatment??? Steroids
have so many horrible side affects, and my condition is significantly
improving on it's own...”
He says, and I
quote: “Well, yes, we expect the symptoms to get better on their
own, just slowly. The treatment is to make it go faster. It's like,
you have a cut on your hand, and you put ointment on it to help it
heal faster.”
I think his analogy
is bullshit. Wound ointment doesn't have the crazy side affects of
weight gain, nervous system stress, chemically induced depression,
acne... etc.
I say, “Yes, but
if you're always in such a constant hurry to do treatments, then you
never take the time to just wait and see how things are developing on
their own. It's like having a conversation and constantly yelling
about what you're seeing, without ever stopping to really listen to
what is being said... I know that there is pressure to move fast
because of costs, but I think the care suffers when everything is in
such a hurry.”
He sort of shrugs
off this criticism, maybe because I am challenging much of the
foundation of the way medicine is practiced in a hospital. Granted,
I also come in through the ER.
Anyways, I make a
second criticism; “I am also very prone to depression. I just
spent the last year working my way out of a huge depression, and I don't
want to get thrown back in that hole by steroids. No one ever asked
me about the state of my mental health before prescribing huge doses
of a drug that can cause depression.”
This, he takes
seriously and says, “Yes, that is an important consideration. I
will talk to my team about that.”
Overall, I trust
the diagnostic work of these physicians. I believe the experience I
had (aside from the crazy ordeal trying to figure out how to pay...
but maybe not) was exactly the same as I would have received in any
state of the art US hospital. The language barrier made everything
harder and more confusing and more scary, but I also distrust this
hospital for the exact same reasons I distrust a hospital in the US.
I felt helpless and powerless. I felt like there were doctors behind
the scenes who knew what was going on, and I was always the last
person to know, they'd just pop by randomly and give me little
snippet of information. It felt like no one ever had enough time to
fully explain what all was going on, and I was just being pushed
through a factory machine, each station doing one small piece of the
puzzle, most of the staff not actually knowing or caring about my
whole story. No one cared if I brushed my teeth before I went to
sleep.
My next step in
working with this MS diagnosis? I will seek alternative treatments
like acupuncture. I will consult with natural doctors about how I
can mediate symptoms with diet, and natural supplements. I'm not
saying I won't ever do a steroid treatment for MS symptoms. It is an
option, among a whole host of other possible options. But I reject
he Dr's assertion that it is the “only” option. That, is
straight-up bullshit. For now, the side-affects of steroids look far
worse than the symptoms it is supposed to “fix”. Mostly I will
work on taking better care of myself and making sure that I get rest
and eat well. One think I know for sure, is that when I eat shitty
food, or skip meals, HORRIBLE BAD THINGS happen. Like losing my
wallet and ending up in the ER in a foreign land, instead of just
making a regular appointment to see the doc.
For now, I think my
big take-away lesson from this experience, is “Listen more
carefully to the small voice, and make self-care high priority”.
I hope this
melodrama is done and behind me. According to Dr Osuna, I don't
necessarily have any reason to expect that another attack is
imminent. If one does happen, I know that it is not an emergency. I
just need to rest and take care of myself, and slowly asses my
situation and my options.
Now, on to a proper
adventure in South America. Saturday, I head up to a lovely
permaculture farm near a tiny town by Lake Guatavita, in the Andes
Mountains.
Love,
Pheonix
