name is Sue. This is my story.
born in Chicago in 1956 and had the perfect 50s childhood
in an upper middle class area and was raised in a wonderful
family. When I was a teenager the world around me was changing
and in turmoil. Being the adventurous soul that I am I wandered
into danger in the city and met artists, writers drug users
etc - you know the drill- anyway I experimented for a minute
in the world of drugs. This was only a short period as I
am a moving on kind of person and cant stay in one mode
for long. I traveled a lot and lied about my age and worked
in the medical profession hoping to get my nurses degree.
I was around a lot of blood and in those days or maybe in
those hospitals there was no fear of blood.
1977 when I was 21, I settled down and got married and had
my daughter Karen. Money was tight but we were happy. I
got into real estate and had a wonderful career and my income
helped raise our entire standard of living. I traveled in
style now (no longer the hippie) and everything was going
really great. The marriage went downhill but I found a life
outside of it and did not waste any time feeling sorry for
myself. My career just kept getting better and I developed
some wonderful friendships that filled the void in my marriage.
1989 at the age of 33 I went on a diet. It was a fad diet
at the time (Oprahís first one) and was medically supervised.
The diet was a high protein liquid program that involved
5 drinks of yuck a day..I didnít eat solid food for 7 months.
During this time I felt dizzy and very weak..The diet Dr.
said to add more salt and not to worry. The diet ended and
I started getting the shakes and breaking out in welts.
I saw several Drs. and they all said I was stressed from
my career and not to worry. This continued and I started
to get colds a lot. At this point I got scared and thought
maybe I had aids. I was tested and it was not aids.
1990 I was on a realtor committee that did public service
activities and I ran a blood drive for the Persian Gulf
crisis. I donated blood and thought nothing more about it
until I received a letter from the blood bank stating that
I had tested positive for HCV. At first I thought it said
HIV. I read it again and saw HCV and had no clue what that
was. I called the blood bank and was recommended to an infectious
disease Dr. At my first Drs appointment he ran more bloodwork
and the next appointment he said I did have hepatitis c
virus. I asked him if I was going to die and he said yes..
I asked him how long I had to live and he said they don't
know anything about this disease yet but in 3 or 4 years
they will know more. I again asked him how long I have to
live and he said the longest I have heard of anyone going
with this is 8 years. Well that was a shocker at the age
of 34 my whole perfect life collapsed right there. My daughter
was 13 and all I could think of was how much she needs me.
those days there was no internet and I was totally alone
and in the dark about what to do next.. I had never even
heard of anyone with this disease and felt alone on an island.
I went to a gastro Dr. and was not too satisfied with him
as he also was learning. At that appointment all the nurses
came out to meet me since I was such an unusual case. This
really scared me and made me think I was REALLY going to
die. Next I did research which required long hours at medical
libraries. I read some studies and the one that made the
most sense was by a researcher Dr. Jorge Rakela. At the
time he was at Mayo clinic and I telephoned him. When he
returned my call I was amazed. I told him about my situation
and he asked me to send my medical files which I did. He
then called and asked me to come to Mayo clinic in Rochester
Minn. I went alone and was terrified. Dr Rakela was wonderful.
He explained that this disease is a long term illness and
that I should get regular bloodwork to keep tabs on it since
it is silent. He said to not drink as it's a liver disease.
at Mayo I also saw a world class psychiatrist at the suggestion
of my Dr. because I was deeply depressed. He started me
on Prozac (antidepressant) which I credit with giving me
back my sanity and happiness. Without Prozac I would have
been depressed for 10 years..With Prozac I have had a wonderful
decade in spite of the hep.
toughest part of this disease is in my mind. I had a hard
time accepting the fact that I was no longer superwoman
and would have to slow down. I tried to run my business
as I had before hep and this just didnít work anymore. I
also learned to say no more. At one point I actually ran
away from home and moved to New Orleans for 18 months because
I felt labeled and got sick of the poor Sue looks that people
gave me.. I just wanted to be me again. After that I reinvented
myself and learned that there was more to me than my career.
I began seeing a local hepatologist and researcher at Northwestern
University Hospital and am happy with him and have been
a patient there since 1992. I have had 3 biopsies over the
years and a lot of blood work. Things have changed a lot
in the last 10 years. There is much more information and
technology out there today.
been 10 years and I am still here. I took a few years off
of real estate to try treatment and for the last 2 years
have tried pegylated interferon and the regular 3x a week
combo interferon.. Even though I am not a sustained responder,
treatment did do some good as I don't need as many naps
now... I had a huge car wreck in Aug 2000 and at that time
the combo treatment which had previously worked perfectly
one thing I want all of you to know is that even though
we have a disability, life and time does go on. Don't waste
your precious time with a bad attitude. Do the best you
can do and try to enjoy the life you do have. My life is
different than before hep but in many ways fuller. In the
10 years I have fought this disease I have lost many young
healthy people I loved. They died in car wrecks, fast moving
cancer, heart attacks etc. So you see we never know what
is going to happen anyway even if we think we are perfectly
healthy. My life has gone on and although its not the way
I had planned it, life is still wonderful... The biggest
difference is my eyes are opened and now I really see that
life is mostly out of my control and all I can do is take
the ride and enjoy the good parts and coast thru the bad,
cause its all part of the ride.....
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