Well, where to begin?
I became infected with Hep C back in 1980 during a "tattoo
my house. Everybody (7 of us) lined up to get a tattoo from
a guy with a
handmade tattoo gun.
I was finally diagnosed in April 2001, after years and years
from doctor to doctor, asking them why I always felt so tired
Most of them said I was a hypochondriac (?) When I was finally
diagnosed, in a funny way, I was happy. Happy to know I wasn't
crazy! I got back in touch with the people at the party and
found out that 6 out of
7 of us did have Hep C, we all had the same genotype (1A),
but that 3 of us had already died from it.
Luckily, my biopsy showed only grade/stage 1. After about
8 months of
research and 3 different opinions, I began my journey with
(Rebatron combo). Unfortunately, this lead to another of the
worst decisions of my life (following the tattoo).
I wasn't having fun, but I was tolerating the treatment fairly
for about 4 months. Then, one morning I woke up andmy right
hand was stuck in some weird cramp. My daughters (3 of them,
ages13, 16, and 24 - thankfully all HCV negative) and I made
a big joke about it,
saying "I have the CLAW". Well, within a few hours,
it was no longer a joke! Within about 2-3 days, my entire
body was painfully contorted with severe muscle contractions.
My arms and legs (hands and feet) were swollen and red and
throbbing, and I could not open my hands, lift my arms, bend
my knees, or open my jaw! I ended up in the hospital twice.
My SED rate (rate of inflammation, normally 0-20) was 140!
All the doctors agreed that this was a severe adverse reaction
interferon, but they also all agreed that they didn't have
the slightest clue about what to do about it.
Well, it has been close to a year now. I have been in physical
therapy 3x per week for the entire time. I can almost walk
now. I still cannot lift my arms over my head. I can drive
again now, but I really can't write. I can't hold my grandson.
I had been a production typist/computer operator for
over 25 years - now this took me 3 days to write. I have had
an EMG/nerve & muscle conduction test which shows damage
to all my
muscles and nerves. I had a muscle biopsy which shows "neurogenic
rearrangement". They say this is permanent. I have been
told that this is a very rare reaction, but I don't know.
They said if they told people about this, it might scare off
people that could truly benefit!!
I am now on a mission to make sure people are100% informed
when they make the decision to go through therapy.
It is my hope that we can all live our lives with joy &
God bless you all!
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