I am an RN, just
found out I had hep C though I've had it for 20 years. I started
feeling weak and tired all the time and having severe joint pain and feet
pain (so bad I couldn't walk at times). In addition my muscles were
sore all the time. I went to a doctor here in Fremont thinking maybe
I had Lupus or something, because I had been diagnosed with an autoimmune
thyroid condition in 1987 so I thought this was something similar. Anyway,
she ran lab tests and it took her a month to tell me I was positive for
hep C, even though I went back to her twice during that time.
Because I had been a patient at UCSF pain management center for an
unrelated back problem and on methadone for that, (I had tapered down and
stopped on my own a month and a half earlier because I noticed it seemed
to be sedating me more then usual), she continually asked me if I
did drugs and gave me that sideways look when I said I did not. After
going off the methadone I noticed these symptoms and they kept getting
worse. I had just been promoted at work to a management position
$86,000/year and was finding I could barely make it through the day and
would hurt so bad when I got home I could do nothing but lay around.
The pain meds had been masking all the symptoms except the weakness, which
I was blaming on the pain meds. This doctor refused to fill out disability
papers for me and only told me my results after I called and complained
and told them I had made an appt. at Stanford. She said because my
ALT was within normal limits I didn't qualify for disability and that she
could loose her license if she filled out the
form. I know she was stereotyping me, (but what about my symptoms,
She is obviously ignorant about the disease and isn't aware that you
enzyme levels can fluctuate throughout the disease and that there are other
extra-hepatic autoimmune conditions that can be caused by long exposure to
reading I have discovered that my thyroid problem was most likely caused
by hep C, and I figured out I got it from my husband 20 years ago.
He died in 1992 from an unrelated disease but was diagnosed with non-a,
non-b hep in 1982. They didn't know then what they know now about
hep C, and I never gave it a second thought. Meanwhile, I have lost my job
and am now relegated to part time work in a different department.
When I asked them for 2 weeks off to undergo diagnostic tests they demoted
me right away, even though everyone said they were happy with my work.
I have seen a doctor at Stanford and had an ultrasound, and go back
Tuesday and Wednesday for follow-up. Because of the
Hashimoto's thyroiditis (autoimmune thyroid disease) all the literature
says I'm not a candidate for antiviral therapy. Moreover, having been a
hospice nurse for almost 15 years I know what these therapies do to
quality of life and 38%-40% chances of sustained response
doesn't seem worth it to me.
To top it off we
have been evicted from our $1,900./mo condo in Newark because of loosing
the high paying job and not being able to pay the rent so now my son and I
are going to stay with my sister in the city. My whole life has been
changed by this disease. Somehow I still know that God is in charge of my
life and has it in His hands. This is such a comfort though I watch
my world crash around me. In some way it's like I'm kept off in a
calm place watching everything from the sidelines. Oh, I do worry
and agonize over my kids' future, but deep down I know I'll be safe, if
not here then in Heaven someday. But the callousness and
insensitivity of the medical profession really makes me mad. Perhaps
because of being a nurse, I have no illusions of being rescued by them.
There is a chance however, as they learn more about the immune response to
the virus, they will be able to come up with less toxic
and more effective treatments. But I'm in Gods' hands either way.
The opinions expressed on
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misconstrued as medical advise.
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March 20, 2012