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Testimony of Laura Day
No one counted me. No one in my college town
investigated to determine the source of the bacteria
which almost took my life. No one in any health
department noticed my case; I was not part of any counted
outbreak. No one cultured me on time. No one made the
proper diagnosis until I was almost dead. Because health
care professionals in Alabama were not required to report E.coli O157:H7 a year ago, my disease did not become a
statistic in any health department network. No one in the
meat industry gave a thought to someone my age, an
eighteen year old college student. No agency risk
assessor considered me when charting those populations
that are most vulnerable. No bureaucrat counts the cost
of thrombotic thrombocytopenic purpura or TTP, my primary
complication, when adding up national medical costs due
to E.coli O157:H7. No one recorded that, to date, my
medical bills exceed approximately a quarter of a million
dollars for one freshman at the University of Alabama. No
one counted that my illness kept my parents from working
for six weeks as they remained by my bedside in a
hospital 250 miles from home. No one in the food industry
cared that my family had Thanksgiving and Christmas
dinner in a hospital cafeteria. No one counted the six
weeks in the spring my mother spent at the University
with me as we worked to salvage my 1993 fall semester. No
one tabulated how my medical bills have driven my family
into financial ruin. No bureaucrat cares that our $400
per month insurance policy provides no outpatient
follow-up care. No one in government thought about the
400+ units of blood and blood products it took to save my
life. No one considered how it frightens me to have the
blood of a thousand donors coursing through my veins. No
one counted how much energy, and pain, and praying it
took to fight my way back from death. These are things
that never show up on anyone's computer model, anyone's
risk assessment, anyone's "incidence" reports.
So you see, no one counted me, Laura Day. No one counted
me at all.
But I sit here before you today with these families to
tell you, " I do count. I am not!" My family
loves me more than life itself. It devastates them still
to think of what happened to me. I had a perfect future
ahead of me. In high school, I was on an award winning
dance team, president of the German Honor Club, a
contestant in the Miss Ft. Walton Beach High School
Pageant, a member of the National Honor Society, Science
Honor, and Alpha Tau Sigma, and voted by the students as
the smartest girl in the senior class. I graduated fifth
out of a class of 453. In my junior year of high school,
I was one of 80 North American students selected for the
Daimler-Benz Award of Excellence, receiving a month long
all-expense paid trip to Germany. The German ambassador
here in Washington, D-C- hosted a luncheon for the 80
recipients and Daimler-Benz executives before we left for
Germany. The highlight of the trip for me, personally,
was when the chairman of Daimler- Benz international read
a quote from my essay as he addressed our group.
When I contracted E.coli O157:H7, 1was on full
academic scholarship at the University of Alabama,
majoring in international finance with a minor in German.
Holding offices in the Women's Honors Program and AIESEC,
an international business organization, provided me with
many new and exciting challenges. My life was promising
and I felt invulnerable. Then something as simple as
eating a hamburger changed everything.
November 12, 1993, my brother, Joe who also attends
the University, and I went home for the weekend. I began
having flu-like symptoms. My mom told me to take some
cold medication, and I'd probably feel better by Monday.
I was awake all night Sunday. Monday morning I called my
brother to take me to the campus clinic where I was kept
overnight. Tuesday I was seen by an enterologist at the
hospital, who sent me back to the campus clinic to spend
another night, in spite of the fact that the stool
specimen I took to his office was nothing more than
blood. Wednesday morning my condition had worsened. My
parents were notified that I was being transferred to a
local hospital, and my mother left home immediately to be
with me. She expected to find me with a simple virus. She
was appalled when she arrived to find much worse. Pallor
of the skin, which accompanies E.coli was already
evident. Vomiting, diarrhea, and severe stomach cramps
occurred every few minutes. Injections of Demerol every
four hours controlled the pain for only a few minutes at
a time. I began having unbearable headaches - a condition
which would reappear many times throughout my illness.
These headaches would sometimes last for days. Many
nights my parents took turns all night massaging my
temples, my neck, my shoulders and back, trying to make
the pain more bearable so that I could rest. Only
occasionally were my parents afforded the luxury of an
uninterrupted nap on the small cots in my cramped
hospital room.
Wednesday night my enterologist informed my mother
that I had a bacterial infection which was strongly
suspected to be the strain of E.coli associated with the
outbreak on the West coast. Thursday night his suspicions
remained the same, but no cultures to confirm the
diagnosis were done, and the course of treatment had not
changed. My mother expressed her fears to him that I was
dying and that a diagnosis must be reached so that I
could receive proper treatment. A gynecologist, a
hematologist, and a urologist were summoned, and
additional tests were made. By Friday night the urologist
suspected HUS/TIP. HUS or Hemolytic Uremic Syndrome is
the most prevalent cause of kidney failure in children.
There is a blurred distinction between HUS and TIP. TIP
is the adult version and often has the same symptoms but
also can include neurological damage. Saturday morning
after a telephone consultation with a hematologist at
University Hospital in Birmingham, a diagnosis of HUS/TIP
was confirmed. Due to my age, I was experiencing symptoms
and complications of both.
Saturday was the day of the Alabama-Auburn football
game. As a happy, healthy college student my plans for
that day had certainly never included being transported
in an ambulance in heavy traffic at 85 MPH. During that
ride, there were times I could see my mom behind us and
knew how tense and upset she must be, having to follow a
speeding ambulance, still unsure of her daughter's fate.
From the minute we arrived at University Hospital in
Birmingham, my parents knew this was where I needed to
be. My attending physicians and the entire staff became
not only my caretakers, but also our family's friends.
Within two hours of my arrival the first of nineteen
plasmapheresis treatments was administered. This
treatment is similar to dialysis. Each treatment involved
having the plasma removed from my blood and being
replaced with 16-20 bags of donors' plasma. The
treatments were horrendous. Sometimes I would have nausea
and vomiting throughout these four-hour ordeals. At times
I would be very, very cold. At other times there was a
painful tingling throughout my body as if an electric
current was running through it. Many times I was so
adversely affected by the pain, shivers, and nausea that
the treatment would be halted until I could bear to
continue. However, we could not wait long because my
blood in the machine would begin to clot.
The doctors informed my parents on November 20th that
very little was known about TIP and its complications.
Treatments would be tried one at a time until I responded
to one of them - if I responded at all. If we were lucky
and I was cured, we would never really know which
medication or procedure was responsible.
My body continued to become more swollen from fluid
retention. Tuesday night after my 9:00pm medication I
became unresponsive for approximately five minutes then
appeared normal again. After my 2:00am medication I did
not respond to my parents or the staff. One side of my
mouth was drooping and it was feared that I might have
neurological damage. My thoughts were still somewhat dear
at this time, and I knew what I wanted to say to my
parents. But when I would try to speak, I could only
count...21, 22, 23 - counting faster and faster so that
they could not understand many of the numbers. I was
combative, suffering from hallucinations, and myoconic
jerking, and had to be restrained. I was rushed out for a
CT scan which, amazingly, showed no neurological damage.
My kidneys had completely shut down. Later that
morning, as I was being transferred to the Medical
Intensive Care Unit (MICU), I stopped breathing.
Fortunately, the nurses were able to revive me. My lungs
had filled with fluid, and I was placed on a ventilator
to help me breathe. Weeks of respiratory therapy
followed.
Thanksgiving day, as other families celebrated the
holiday together, the nurses in MICU were kind enough to
break all of the rules and allowed my parents, my
brother, and seven other family members extended visiting
privileges even though I was comatose and unaware they
were there. My grandparents began their 200 mile journey
home Thanksgiving evening believing they had seen me
alive for the last time.
On November 26th 1 regained consciousness after being
nonresponsive for three days. My parents still have the
notes I wrote, in kindergarten like penmanship after I
regained consciousness. The first question I wrote, a
typically teenage one was, where are my rings? My class
ring and birthstone had been removed because of the
severe swelling. As my kidneys failed, I gained 30 pounds
in less than a week. I was unaware that I was on a
respirator and my second question was, will I ever be
able to speak again? My throat was so sore that I could
not speak above a whisper for days after the ventilator
tube was removed.
I left MICU after four days and my health actually
improved for a few days. Just when we had renewed hope
that I was getting well, all of my blood functions
started crashing again. The platelets in my blood were
still being destroyed by the infection. A myriad of
complications and procedures followed, including more
plasmapheresis and chemotherapy. My platelets were being
destroyed and those that remained were not healthy.
My platelet count was so low that the slightest touch
to my skin created a new bruise. petechiae and
ecchymoses, two separate forms of bleeding under the
skin, caused purple blotches all over my body. I also had
deep purple stretch marks from the rapid weight gain.
As my kidney functions improved the fluid retention
lessened, and I began to look more like myself. Then came
the anabolic steroids. The steroids caused more puffiness
and brought steroid acne to a formerly flawless
complexion. I also began to lose my hair as the result of
chemotherapy which had begun when I was in MICU.
I then underwent a very painful bone marrow scan which
provided no new information, nor did two exploratory
abdominal ultrasounds. For weeks as I would try to read I
was painfully aware that my thought process had
drastically slowed. I began to wonder if this condition
would last, and if it did what my future would be like.
My blood pressure was dangerously high, accompanied by
frequent nosebleeds. My headaches were especially bad
during this time. Whole blood and gamma globulin were
administered on days when I was not given plasma
exchange. Still I did not improve. Nothing the doctors
had tried was working.
As a last resort, my team of doctors decided to remove
my spleen in an attempt to save my life. We would not
have been as optimistic about this procedure had we known
that three days before I arrived at University Hospital a
26-year-old female had died from complications of TIP.
The splenectomy had made no difference in her case.
Luckily, after the splenectomy my platelet count
improved dramatically. I spent Christmas day sore,
scarred, bruised, weak, and losing hair, but relieved
that I would be able to leave the hospital in a few days.
I was one of the fortunate few TIP survivors.
On December 27th we tearfully said good-bye to the
staff and began our five-hour drive home. I continued to
suffer from anemia, high blood pressure, kidney problems,
and an uncomfortably strange tingling in my fingertips
for months. I still have stretch marks from the severe
weight gain and a scar on my stomach from the
splenectomy. My hair is still in the process of growing
back. I have worn a baseball cap for the past ten months
and have just now been able to go without one. The
removal of my spleen has left my immune system
compromised. Now, as evidenced by my September 1994
hospitalization, a simple virus often requires special
treatment. I am much more susceptible to colds, viruses,
and the flu. Neither my doctors nor I know what my future
will hold. Will I have kidney problems high blood
pressure, problems with my reproductive system? No one
knows.
Many of you probably have children close to my age.
When they go away to college, you worry about the choices
they will make: choosing to drink, smoke, have sex, do
drugs. Few of you will worry about your kids choosing to
go out for a burger. Your children will have no choice
with E.coli O157:H7. It will choose them. You, the
United States Congress has a choice to either protect the
American people, or turn your back on them and bow once
again to the wealthy meat industry 's selfish demands.
The meat industry will tell you they want a system to
protect people, but it has not, and will not, happened
unless Congress takes action.
I am back in school and have resumed a full academic
and social schedule. However, I will be watching what
this Congress does with meat inspection reform this year.
America is going to be watching very carefully, because
this decision affects families on the most basic level of
health and safety. Safe food should be a given in any
civilized society, at least any society that I want to be
a member of. This Congress has a responsibility to do the
right thing for the citizens. It now has an opportunity
to stop this kind of senseless human suffering.
No one counted me, Laura Day. But I will be counting,
I will be counting very carefully what Congress does
about contaminated meat in America and the Family Food
Protection Act of 1995. E.coli O157:H7 tried to take my
future from me and failed. The many who have not survived
their battle with E.coli are represented by my voice and
my vote to bring reform and I, along with every family
affected, will be counting.
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