Encephalitis Cases
Jennifer
Massachusetts, U.S.A.
Posted: Dec. 1, 2008
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Encephalitis Cases
Jennifer
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My name is Jennifer. I am thirty-two years old from Massachusetts
and suffered a debilitating virus in 1994, as a freshman in
college, I was almost 19. I had always been very active, healthy
and athletic. I was attending Trinity College in Burlington,
Vermont. I left for my freshman year in college early to play
soccer for my college.
Before our first game, I had started having severe headaches, nausea, and becoming
really dizzy. I had never had headaches ...something was up
so I called my mom and told her what I was experiencing. I went
to my classes that day, but I felt so uncomfortable that I had
to leave. Later in the evening, I called my mom to say that
I was feeling a little bit better (I thought that whatever it
was was passing).
The next day was my first soccer game. I had been looking forward to playing my first college level soccer game. It was against Norwich University, Vermont. I was so happy I actually got play time in my first game. At one point during the game, I head butted the ball and went down. My coach took me out of the game to sit out for a while, but I was feeling ready to go back in if they needed me. We won the game. We all came back to the dorm and the coach threw us a pizza party. I started feeling sick again. I didn't join my team for pizza, I just stayed alone in my dorm room hoping to sleep it off. I started feeling really dizzy and the terrible headaches were back.
I wandered down the hall to my friend's dorm room and asked if anyone had any
Tylenol or Advil. My girlfriend gave me Aleve. At this time my dorm resident
assistant (RA) walked into the room . I said hi and bye as I just wanted
to get back into bed. My RA insisted that I go to the ER. The University
of Vermont (UVM) teaching hospital & ER was right across the street. I said,
"you're right, I really should go, I just feel so off, and I have never
had headaches before, something is definitely going on." My RA insisted
that she drive me over to the ER. She drove me across the street to the
ER. She left me off at the back door and I went into the ER alone.
When I walked in there, it was quiet and I met with a nurse right away. I explained
to her what was going on and when my not feeling well started.
She asked me what I had been doing today and I told her I had
been playing soccer and went down after I "head butted" the
ball. (NOTE: This is when I made my first mistake (and probably
a mistake that would cost me in getting early treatment and
potentially limiting how much damage would ultimately take it's
toll on my body)). After hearing about the soccer game, she
never sent me through triage and never ran any tests. She just
dismissed my headaches/nausea/dizziness as a mild concussion
and attributed them to being hit in the head with the ball even
though I had told her that I started feeling like this a day
before the soccer game and head butting the ball! She advised
me to leave and to go back to my dorm room, take Tylenol and
rest it off.
I went back to my dorm room and fell asleep. The next day, my college was sponsoring
a student/community day all Labor Day weekend long. What that
meant is that my college took bus loads of students to different
areas in Vermont, low budget or non-profit local facilities
that needed volunteer help, so that the students could help
them with clean-up, yard work, farming preparation, etc.
My group was bused to a local farm with an education building/museum on site.
When we got there, I still didn't feel all too good, but I was determined
to shake it off and do my part in helping out. Our job was to rake, bag
leaves and prune the area around the exhibit building.
I did a little yard work and then volunteered to clean up the inside of the exhibit
building. I moved things around, I dusted, I vacuumed. I was feeling worse
and worse. I didn't want to socialize with any of my new college friends
- I just wanted to be left alone. I felt awful the entire way home.
Back at the dorm, I felt so dizzy, headachey and sick that I ran into our dorm
hall floor's bathroom. I ran into a bath stall and shut the door behind
me. I sat on the toilet fully clothed rocking back and forth just trying
to rock the dizziness away. I got up to leave and washed my face, but I
felt so sick and weak still. Before I made it to the door, I sat down on
the bathroom floor and lied there in the fetal position just rocking. I
finally got up and went to my room and got into bed.
At about six o'clock the next morning, I awoke to my roommate Liz saying, "Jenn
Jenn, you gotta get up - you're going to be late for class." I responded,
"ok ok I am getting up." I rolled over and went to get up, but I was too
weak to get up and just fell to the floor. I was out of it, I just felt
like I was in a bad dream. My roommate called for an ambulance.
Once the EMT's arrived, they picked me up off of the floor and instead of taking
me out on a stretcher, they told me I was going to walk. My dorm hall building
had a cargo elevator in which they could have used or they could have carried
the stretcher down three flights of stairs. I had an EMT holding me up by
each taking an arm, my feet just dragging. They kept telling me to walk
...I just looked up at them in tears saying that I was too weak to walk
in a very soft voice. We reached the ambulance, but I was to weak to climb
into it. They helped me in it and rushed me across the street to the UVM
ER.
My family and friends drove almost four hours to be by my side. I was in the hospital,
at UVM, and in & out of conscienceness for about a week. My
parent's were simply told that I just needed some TLC and to
bring me home to Massachusetts. My mom was like "are you
kidding me - my daughter is unresponsive and you want me to
take her home"? My mom was beyond frustrated and disappointed
in my care.
My mom phoned my pediatrician back home and he told her what tests she needed
to request. I then had several tests including a spinal tap which revealed
that my white blood cell count was through the roof. My good cells were
attacking each other. My brain stem was swollen and it appeared that I had
damage to the left side of my brain. It was definitely something neurological
as my arms drew up to my face and I just cried (I had a fever of 106 and
my body was being taken over). I lost mobility in all four limbs.
After a week in UVM's hospital, my mother had me air lifted down to Children's
Hospital in Boston. By this point, my voice was gone too and my family (as
well as doctors) didn't know if or how much damage was done to me cognitively.
I couldn't move, I couldn't talk, I couldn't even blink or hold my support
my own neck. I was fed by a nose gastric tube (or NG Tube). I was on high
levels of steroids to try to reduce the inflammation to my brain stem and
morphine.
I could hear and understand everything going on around me, even though I could
not express it or everyone around me had no idea to what extent I could
or couldn't understand. I heard the term A.D.E.M. a lot. I had teams of
physicians coming into my room every morning and all saying that I had "Acute
Disseminated Encephalo-myelitis" or A.D.E.M (a form of Encephalitis). They
couldn't isolate the organism that brought this virus on and to this day
they can't explain what had happened to me. All that they could tell me
was that it was mono-phasic...it is not progressive. I had one attack, the
damage was done and I could get better. Often, A.D.E.M. is confused with
Multiple Sclerosis as A.D.E.M is a direct variant of MS and extremely similar
in symptoms. The major difference is that with MS, it is multi-phasic and
progressively gets worse.
After I spent about a month in Children's Hospital, my mom kept asking me to blink once for yes and twice for no in response to a question as she had been doing all along. The difference was that this time, I actually blinked. My mom could not have been more happier. She ran down the hall and got the nurses - she was ecstatic!
I started to have a little movement in my left arm/hand and fingers. My mom's
best friend bought me a child's alphabet board. They would ask me to "spell"
out answers to questions like where do I live, who are my parents, who are
my siblings, other addresses and phone numbers ...I got all of them right.
They were so excited for I was still "me."
Shortly after, I was moved to a rehab facility in my home town. I spent the next
five months here. Slowly, I started to regain my strength with continuous
therapy. The improvements were small, but promising. My left side was coming
back faster than my right side - I had hemi-paresis (similar to a stroke).
Within a few months, I began to eat pureed food; uttering sounds; supporting
my own neck again; sitting up on the edge of my bed; and standing up in
the parallel bars.
I could go on and on, but in brief, I went home with home care/therapy in place. Fourteen years later, I still rely on a power wheelchair, but I am able to ambulate a little with a hemi-walker and speak a little better (I am breathy and difficult to understand at times, but I am definitely improving). Insurance, in general, doesn't approve continuous therapy so I joined my local YMCA and workout about three hours a day. I have made slow and steady gains; I went back to college; I took on part-time work doing taxes and disability advocacy work. I now live independently and drive.
Jennifer Massachusetts, U.S.A. Posted: Dec. 1, 2008 |
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