I woke up one Friday in April
of 2012 and I couldn’t see as well as I could the day before.
I thought to myself, wow, I must need a new glasses prescription, and tried to shrug it off,
but something really didn’t feel right. I did what anybody would do, here (Google
it), and found that a lot of women experience swelling in their eyes (just like
they do in their hands and feet) during pregnancy, but that I should talk to my
doctor if my vision seemed off at all. I emailed my doctor, the amazing Emily
Harrison, and tried to play it off like I was just being paranoid. She had been
encouraging me to get my eyes checked out, because I was pregnant and Type 1,
and as such I had an appointment scheduled with a new eye doctor for the
following week.
When she called me back a day
or so later, she was very stern, “You do not email about eye stuff,” she said. “You call about eye stuff.” She told me to see an eye doctor as soon as
possible. When I called to move my appointment up, the office told me that the
doctor was going to be out of town for a week and so I could come in for the
scheduled appointment or I could get a recommendation for a different doctor.
Back-story: I am a big baby
about eye stuff. I did not like my previous eye doctor. In fact, to be fair to
the previous doctor, I don’t think I believed it was possible to like somebody
who was going to shine bright lights into my eyes like it ain’t no thang. Dr.
Harrison had recommended Dr. Prescod to me because she thought I might really
like him, and I did not want to see anybody else.
I kept the scheduled
appointment, figuring, it was literally as soon as possible to see him.
When I went to see my new
doctor, a nurse checked me in and did the normal series of tests, asking me to
cover one eye and read as far as I could on a chart, then cover the other eye.
The first one, covering my left eye, went ok. When I had to cover my right eye,
however…
“I’m sorry,” I had to say
sheepishly. “I can’t actually see anything on the chart.”
The nurse asked me to look at
her and tell her how many fingers she was holding up.
“I’m…sorry,” I said again,
struggling to focus. “I can’t…really…”
“Can you see me waving my
hand?” She asked, waving her arm around dramatically.
“Yes,” I was relieved. Better
than nothing.
What followed was a troubling
diagnosis. I had retinopathy in both eyes, and it was very advanced in the left one. Basically, because I had been
diabetic at this point for 22 years, I had a small amount of damage in my eyes at
the start of my pregnancy, but going through a tough pregnancy had somehow
moved things along at an alarming rate. Blood vessels had ruptured and created
scar tissue, and in response, my body had created newer, weaker vessels, which
ruptured more and more easily, and the resulting scar tissue had pushed my
retinas out of place.
In my right eye, this meant
my retina was being pushed out of place and was gradually becoming dethatched,
and that things were starting to get blurry. In my left eye, that meant my
retina had become completely dethatched and was starting to crumple like a piece
of paper.
My doctor recommended
surgery, as soon as I gave birth.
I was nearly 8 months
pregnant at this point, and I was not having an easy time as it was. Having
this to look forward to caused me some pretty respectable anxiety attacks. My
wonderful husband, Kurt, called my mom and asked her to come over and explained
to her what was explained to us as I sat on the couch and cried. I explained things to my boss, warning him
ahead of time that if he was too nice to me about all of this, I would probably
burst into tears, I told my friend and coworker, Jessica, who volunteered to be
my seeing eye friend if I needed it.
A couple of weeks went by and
I went to see my eye doctor at least once a week to check out how things were
going and to try laser treatments, which meant a nurse holding my head in place
while the doctor held a plastic contact over my eye and then shot lasers into my eyeball to try to stop the
progress of the rupturing blood vessels. The laser being shot into my eye sounded
like a video game being played. It was not the most fun thing in the world and
I would not recommend it for recreational purposes.
Due to the fact that I was
pregnant and a diabetic, I was also seeing my OB/GYN once a week to go over my
blood sugars, insulin doses, and to listen to the baby’s heartbeat. Due to the
high-risk nature of any diabetic pregnancy, I was also going to the hospital
once a week to do a “non-stress test,” which basically means I’d have monitors
strapped onto me and ultrasounds taken to check the levels of fluid in the
placenta. It was done by med students (all of whom were lovely). Liam, who we
were still calling “Ninja” (having not yet selected a name), was at this point
diabolical enough to wait until the med student got into a good position to
take a picture, and then would move to block it. I think it will probably be
thanks to him that these future doctors will forever more be extremely speedy
at taking ultrasound photos.
But, I digress.
I was suddenly unable to
drive myself, so all of this meant that either my husband or my mother would
have to come pick me up and drive me to each of these appointments. It was not
an easy time.
It was Monday, May 21st
that Dr. Prescod called me at work to tell me that I was not, after all, going
to wait until I delivered the baby to have the surgery. “You’ll only get worse
between now and then,” he explained. “I’m nervous that you will lose more
vision before we can do anything to fix things.” He explained that he’d
attended a conference that past weekend for the purposes of speaking to an old
classmate of his, Dr. Jay Duker, who happened to be the #1 retina specialist in
the area (and, I would later figure out, the country). “He wants to perform the
surgery as soon as possible.”
“So, when will that be?” I
asked, waiting to find out how many weeks I had left at work.
“As soon as possible,” he
repeated. “Possibly tomorrow.”
I emailed my boss to tell him
I was leaving work for the day. I emailed my husband and asked him to come pick
me up and take me home. I waited for him to text me his whereabouts in the
handicapped bathroom right next to the front doors to my office suite, where I
sat on the floor and sobbed. I was due
to give birth in exactly one month.
Kurt showed up and drove me
home, where we called my mom and had another tearful session on the couch. We
both took Tuesday off and were alerted early that morning that we were to come
to Boston the following morning. The first surgery would be on Thursday.
Dr. Duker of Tufts University
performed both surgeries, over the course of 11 days. Since I was pregnant, I
could not be given general anesthesia and instead was given a local block and a
fairly low amount of a sedative, which meant I couldn’t see what was happening,
but was awake for each two-and-a-half hour surgery.
My vision going into the
surgery, in my good eye, could be corrected to 20/40, which isn’t a whole lot
worse than people who have perfect vision. They operated on the bad eye first
to try and restore some of the vision I had lost, but were ultimately
unsuccessful, due largely to the severity of the damage that had already been
done to the retina in that eye. I’m not sure where the good eye’s vision was by
the time of the second operation, but I can say with absolute certainty that it
had gotten much worse very quickly.
I remember lying on the
stretcher before going in for the second operation, looking at my mother and my
husband and wondering if I would ever be able to see them again.
It took me about two weeks to
be able to see well enough to get a prescription for lenses so thick they
protruded from my glasses frames on both sides. Putting them on and being able
to see even a little bit more clearly was the most shocking thing. My mother,
step mother, husband, brother, and brother’s girlfriend were all over for
dinner when I tried them on and when I told Michelle that I could kind of see
the pattern on her dress, the room erupted into cheers. It was two days before
my due date.
My son was born via
C-section, out of necessity. I’d been warned previously that I was not to even
so much as cough or sneeze if I could possibly help it (something that, for
some reason, was the most amazing thing about all of this to a lot of people)
because of the pressure it would put on my eyes. Liam Palmer was born at 11:01
am on Thursday, June 21st. My eyes and section scars healed over the
next few weeks.
My eyes are still healing
even now, in January of 2014. As I type this, the font on my computer is
comically huge so I can read what I’m typing as I type it. It has taken me
several hours to write this up, and will take me about the same amount of time
to go back and edit it for mistakes. Not because I am a terrible typist, but
because of how hard it is to focus in on a misspelled word and try to get the
cursor into the right position to correct it.
My corrected vision is now
about 20/250, which is to say, I am legally blind. Now and then, I realize I
can see something I couldn’t see before, which feels like a triumph. My vision
clouds over several times an hour, something no doctor has been able to figure
out. It’s like the sun hitting a frosted over windshield—I suddenly am unable
to see anything, and it takes sometimes up to 2 minutes for the cloud to
dissipate. It’s better than it was a few weeks after the surgery, but is still
extremely frustrating.
In the first year
post-surgery, I was promised many potential changes, most of which did not
occur. I still, for example, have silicon oil in both eyes, holding things in
place so the same thing will not happen again. This is necessary in part
because I am young, several decades younger than most people who have this
surgery, and therefore my body creates scar tissue more easily than most
patients, which could cause the problem all over again. The oil distorts my
vision and removing it could make it get as clear as 20/80, a drastic
improvement, but not worth the potential danger. I also had cataract surgery
halfway through the first year, and am due for one in the other eye sometime
this spring (the oil, for all its good qualities, also causes cataracts in 100%
of all patients). My left eye is basically completely useless—I can see some
light out of it, but basically nothing else, and sometimes not even that.
It’s ok, though.
If you know me, you’ve heard
me claim to feel lucky for everything that’s happened. And I’m not going to
tell you, here, that I’ve been anything but truthful. Sure, I’d like for it to
have never happened, but there’s nothing I can do about that, now, and where I
am, now, is pretty ok. I have a wonderful little baby boy, the best husband in
the whole world, great friends who have helped me every step along the way, and
an amazing family to support me in my times of need. I am incredibly
comfortable in my apartment and am trying new things all the time, when I’m up
for them.
It could always be worse. I
could have let the problem go on further before seeking medical attention. My
doctor could have waited to perform the surgery those extra few weeks. I could
have had a less capable doctor performing the surgery. But I’ll talk more about
all of this somewhere else.
The point is, that’s where I
am, now. Still healing, a year and a half out from surgery, legally blind but
able to see well enough to take care of my son and occasionally write about it.
All is well.
No comments:
Post a Comment