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| Allison |
It has almost been one year since my ordeal with Viral Encephalitis.
On Christmas day, 2005, I woke up with a cold sore on my lip. I was, in many ways, in the prime of my life. I was planning a lavish summer wedding where I would marry (in my estimation) the best man on the
planet, and had finally landed what was literally my dream job. Soon after the New Year, I woke up feeling sick with symptoms similar, yet not at all like the flu. By the very next day, I was well again expect
for one exception – inexplicable and unusual pangs of pain in my head when I would stand up, or bend over. The pain was fleeting and
seemingly insignificant. I assumed since I had been working so hard with my new job and maintaining a long distance relationship that it
was stress related. After visiting my fiancé in Utah, I returned to
Minnesota where I was teaching at a university. It had been almost four
weeks since Christmas. Since these pains were unusual, I decided to see
my physician. He was unavailable, so I met with his assistant. After explaining my head pain as throbbing but very, very brief, he told me that I was suffering from hormone headaches. I found this unusual, but he assured me: at my age (27), these hormone headaches were a normal part of life.
Two days later, I began the spring semester by greeting my classes and
handing out course syllabi. It was a Friday. Saturday morning, I sat up
in bed early in the day. I lived alone. As usual, I felt the fleeting
pain in my head. I had become accustomed to feeling the pain when I
would stand up, bend over, sit up – it seemed like it was related to a
change in blood pressure. I was a very busy girl, but I found myself
with an entirely free schedule that day. I casually decided, while
still in bed, to go to the emergency room to have this pain checked
out. Although I had just been to a physician's assistant only three
days earlier, I would seek a second opinion. I felt silly for going to
the emergency room, and my biggest concern was that they would keep me
waiting there all day. I took my time and made a cup of tea, then took
a long, hot shower. I read my Emails, check out the news, and printed
out directions to the hospital. Obviously, I did not feel that there
was a real emergency at hand. I got into my car, and got lost on the
way to the hospital. I drove and drove, but could not find it. I was
still relatively new to town. I saw a large church in the distance, and
remembering that the hospital had a Catholic affiliation. I drove
towards it. Behind the church was the hospital.
I went inside, again feeling a little foolish for what would likely be
a waste of my time and someone else's. I was surprised when I was taken
back moments after my arrival. I excused it as being early on a
Saturday, so things must be slow. After talking to a nurse, a
neurologist came out to examine me. I thought this odd as well. I was
having minor head pains. Did I really need the attention of a
neurologist? As he examined me, he asked me question after question.
"Do you feel dizzy? Do you feel an altered state of consciousness?" I
felt fine. I felt absolutely, 100% fine. If I had stood up, I would
have been in pain, but only for two to four seconds. I thought the
doctor and his staff were overreacting as they examined me with what
seemed to be urgency. Suddenly, I blurted out: "I feel weird." "What do
you mean you feel weird?" my doctor asked. "I feel weird" was the best
I could offer. I placed my hand on my chest and slid it down to my
belly. "This whole area here... it feels like a rush of adrenaline."
That is the last thing I remember. I had been at the hospital a mere
fifteen minuets.
When I woke up, I was on a hospital gurney wearing a gown. Confused and
somewhat dazed, I looked to a nurse next to me. "Excuse me nurse" I
said calmly. "I do not remember putting on this hospital gown." She
brought my doctor over, and he told me that during the examination, I
had a grand mal seizure. They took my down to have an MRI where I had
another grand mal seizure. I had been unconscious for about an hour. He
told me that they had performed and MRI and that he had detected a
lesion on my brain. He followed that up by telling my they were
preparing me for a lumbar puncture, also known as a spinal tap. They
would drain out the fluid in my spine to test it and see what might be
happening in my brain. I called family, and by the next morning, my
arthritic mother was by my bedside after an all night flight. For five
days, I became more and more sick. They could not diagnose me. Each day
I became more and more weak. I could not eat. In fact, all I could do
was sleep. Some days I slept nineteen hours a day. I spent my 28th
birthday, January 24th, unconscious with the exception of a few hours.
I was weak and confused. I lost all peripheral vision because of the
swelling in my brain. Although I never verbalized it, I was sure that I
was dying. A visiting doctor came by my room to examine me. He told my
mother: "I think I know what is wrong with her. If it is I think it is,
it's very serious. I will start her on the medication. If it's not what
I think it is, this medication will not hurt her." They started me that
night on intravenous Acyclovir. They rushed my blood to the mayo clinic
in Minneapolis. The results came back the next day: I had tested
positive for Herpes Simplex 1 Viral Encephalitis. I never presented the
usual symptoms of Encephalitis. If I had decided to stay in my
apartment that day, there is no telling as to what my fate would have
been. I learned that the Herpes Virus had somehow entered my
bloodstream. The cold sore on Christmas day was either the first
symptom of the Encephalitis, or the ultimate cause. I know that my
immune system was so weak that the herpes virus could have entered my
blood stream from the cold sore alone.
Once I was diagnosed, I assumed they would be able to patch me back up
and send me on my way. Little did I realize that recovery would be
long, slow, and agonizing. It had been almost three weeks and I had not
eaten. I was constantly vomiting. My mother could only look on from the
couch in my room. She slept there every night while I was there: one
month. When I was sent home, I was still not well. I wore a "machine"
that released a dosage on Acyclovir into my body every hour. I had a
nurse visit me every other day to change my bandages, etc. I still
couldn't eat, but I felt myself coming back. I felt the illness backing
down. I went back to work three weeks later, still wearing the
"machine." I was determined to get back to my normal life. Once I was
back to work, my mother went home and I was alone again in Minnesota to
contemplate what I had been through.
I began research on Encephalitis, and only then did I learn just how
sick I was, and just how lucky I am. I learned that many people die
from Encephalitis (the mortality rate is roughly 35% with treatment,
70% without.) I read about how many survivors suffer from a variety of
life altering brain damage, either resulting in physical disability
(paralysis, etc.), personality change (anger, depression, etc.),
complete or partial memory loss, or all of these. It was shocked to
learn that more than 50% of all encephalitis survivors suffer from
life-long disabilities. I was blessed: I regained my peripheral vision,
my memory was intact, and I seemed to be the same girl I was before in
regard to personality. There is one daily reminder, however, that I
will take with me for the rest of my life. I had two lesions on my
brain in the right temporal lobe (doctors found that a second lesion
had appeared a week into my hospital stay). Those open lesions would
turn into scars, and because of their precise (permanent) location in
my brain, I am at a constant risk for seizures. I take a high dosage of
Keppra, and anti-seizure medication twice a day. It allows me to live a
normal life without the worry of random seizures. However, there is one
issue I will at some point face with Keppra: it is lethal to a fetus,
as is all seizure medication. When the time comes to start a family, I
will have to go off of the medication and likely endure seizures during
the pregnancy.
This summer I got married, and moved to a new city. Life is back to
normal, but I often think about this illness, and how blessed I am to
be alive. It is a mystery as to how this all happened, as the illness
is so rare, especially to someone my age. I am eager to talk with other
Encephalitis survivors. Only they can understand what I've experienced.
To many of my friends, I think it seems like I had a terrible flu. The
only one who saw me though it all was my mother who never left my side.
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Allison
Minnesota, U.S.A.
Posted: January 2006 |
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