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Hi, my name is Pam and I am 44 years old.
I have daughter named Christina. A wonderful daughter I might add. I want
to share with everyone how drastically our lives have changed because of
encephalitis.
On March 11, 1998 my husband Randy (45 years old) came home
from work with a headache. The following day, March 12th, he
called his job and reported he would not be coming because of
illness. All day long he just stayed in bed taking Tylenol every
four hours for the bad headache he had. He would wake up and
try to eat a little bit but he certainly wasn't getting any
better. The following morning, March 13th he woke up with full
blown flu symptoms. I called the doctor and had Randy at the
office at 12:00 p.m. The doctor looked at him, never touching
him and said he had Influenza B. The doctor gave Randy a shot
for vomiting and sent him home. Five hours later, Randy was
worse, his headache was unreal, the fever was up and the vomiting
did not stop. So, I took Randy to our local hospital.
The first doctor that saw Randy was waiting on a throat test
to come back and was going to send him home. Another doctor
replaced the first doctor and discovered Randy could not put
his chin to his chest. A spinal tap was done and showed Randy
had viral meningitis. This was a Thursday night, and he was
admitted into the hospital. They started him on acyclovir. The
following day, which was a Friday (March 14th), Randy started
talking incoherently and I would get lost trying to follow his
conversation. I asked the doctor what was wrong with Randy and
he said it was a side effect of the medicine. The following
day (March 15th) Randy's speech got worse but the doctor still
insisted it was the medicine. So, as Randy's wife and not having
a medical background, I went along with the doctor's diagnosis.
By Saturday (March 16th), Randy was to ill to be left alone.
He thought he was back in the Marine Corps and I was to stay
at his mom's. After sixteen years of marriage he asked me if
I had any brothers or sisters. I was very concerned as I saw
his condition getting worse. Needless to say, I paged the doctor
that night but he never returned my call.
The next day when the doctor came in and took a look at Randy
he said "I don't think this is the medicine." I called my daughter's neurologist
and she said "get him out of that hospital". She had Randy transferred to
George Washington University Hospital located in Washington, D.C. on March
17, 1998.
The next day, March 18th at 2:30a.m. the hospital called to
ask if Randy could be put on a respirator. I of course said
yes, anything to help him.
On March 19th Randy had a stroke. Through much testing, it was
discovered that Randy had encephalitis. As bad has he looked
the doctors said "people have survived in worse condition then
this".
On March 20th Randy went into a coma. From that point on, the
following things happened to Randy:
He developed a blood clot on a lung.
Both lungs collapsed and could not be repaired.
A series of test were done which revealed the infection had
attacked the part of his brain stem that controlled Randy's
breathing and the ability to wake up from his coma.
Randy stayed in the hospital from March 17 to April 6, 1998.
After speaking to the doctors, and realizing that everything
possible had been done for him, I had to finally agree to let
him go. He had fought so long and so hard.
I told our daughter (Daddy's little girl) what had to be done.
This was on April fools day. As I entered the hospital, all
the doctors approached me to say, this is not a good time because
for some reason Randy had opened his eyes. A neurological test
that was done to Randy's foot (shock) turned out better then
before. Yes, we thought our prayers had been answered but this
was only for a day and all was back to were it was 2 days before.
So, after another series of tests to confirm the condition of
Randy, the doctors said word for word "this is what you get".
Our next step was a tracheotomy and I guess a nursing home.
I had to do the right thing , not for us who are left behind
but for Randy. On April the 6th, 1998 the life support was removed
from Randy and he went off to the other side peacefully with
that precious grin on his face. Randy is deeply missed by Christina
and I, as well as my family and his Mom and Dad and their family
and many friends.
About our Family:
Randy and I were married on Valentines Day in 1982. We had dated since 1980.
And our daughter was born June 24, 1982. Randy worked for the Department
of Justice for 25 years. He designed space for the im-migration department
and a good job he did. Randy coached little league baseball for a local
team for 5 years and one year he coached an all-star team. He loved his
Family and Harley very much and was a lot of fun and laughter. Christina
and I are doing okay, we have good days and bad ones. We do have each other
and we do the things that we did with Randy knowing Randy would want us
to do, just as though he were here. Randy is gone but will never be forgotten
in our lives. Please feel free to contact Pam & Christina
I need to add this to my letter.
I felt very confident with the doctors at George Washington
Hospital but at the same time, all I heard was how rare this
illness was. I believed them until I started reading on the
internet. This is not rare, it is just un researched and rarely
reported. I felt a lot of guessing was going on which is all
the doctors can do until they learn more from research. I am
convinced there is not enough research done on this disease,
and the public needs to send their stories to their congressmen
and senators and request that funds be provided for this research
and all cases be reported to show this is not a RARE disease.
We need to join together and attack them with letters the way
this so called rare disease attacks people and drastically changes
so many lives.
WE LOVE & MISS YOU DADDY
Pam & Christina
Virginia, U.S.A.

Posted: July 1, 2000
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