Jan's Story
(by Jan)
My name is Jan Rappe'. For years when
ever I had blood work done my doctors would sit me down and advise me that I should cut
back on my drinking. I don't drink, never have, I don't like the taste. When I told them
that,
they would give me a sideways look and say, well your liver tests indicate that you do.
Well after having gall bladder surgery, then a hysterectomy due to cancer I began having
some strange symptoms. I thought they were due to hormone problems so I went to my gyn.
Fortunately he is a well informed Doctor [ one of very few ] and when he saw my blood
results sent me to a liver specialist with instructions on what tests to take.
The tests
revealed HCV, and liver enzymes at 101. The specialist told me not to worry, it was
incureable but it had no symptoms and was just something you carried around. I accepted
his word and went home thinking it was kind of strange but that I didn't have time to be
sick anyway. As time went by symptoms persisted and increased I began to question the
advisability of staying uninformed, so I set out to get informed. My doctor was no help,
all he gave me was a pat on the head and a don't worry [that just made me mad, I hate
being treated like I don't have a right to know what is going on in my own body]. I
insisted on and had to pay for all my labs for the preceeding six months, I am a member of
Kaizer Perm. a HMO and they don't seem to like to give out any more information than they
have to.
Armed with my labs which meant very
little to me as a lay person I began to search. When I started looking on the web I
finally got some info that was
accurate. My local health department sent me a flyer that said it was
caused by drug use and sexual contact, and I knew that I hadn't gotten it
from either if those avenues. I've never used drugs and my husband of
thirty years doesn't have it. The web let me know that it was most likely
contracted through a transfusion I got in the early seventies at a naval
hospital in the San Francisco area. I think the most helpful information was
that I wasn't crazy, there were others out there who had symptoms just like
mine. I wasn't the only one that felt crappy most of the time. I had ups
and downs where sometimes I could function almost normally, but other times I was
so tired I could hardly cross the room. I was sick to my stomach all the
time, headaches dizziness, foggy thinking and memory problems, and the
itching was awful sometimes. These and other of my symptoms were described by many other
hep C sufferers. This isn't a disease without symptoms. I went back to my
doctor and was
again treated as if I was just imagining things. After much discussion he agreed to do an
ultra sound, my liver and spleen were both enlarged. Still I was told to go home and in
essence wait till turned green then call him. I finally went through the paper work to get
a second opinion.
The new doctor advised me to have a
biopsy and start on the Interferon/ribavirin treatments, but as he was in another city he
sent his conclusions to my other doctor and he was the one to supervise the treatment. I
never really got my biopsy results, I was told it didn't look to bad [whatever that means]
my viral load wasn't to bad either. My sgot was 160 and platelet count was
80 so I guess they weren't to good either. I was on the therapy for 7
months and didn't have to much trouble with side effects, but my platelets
went to 63. When we did the retest of viral load I was told the treatments
weren't helping so I might as well stop.
I'm back to go home till you turn
green I guess. I understand that there is no cure and very little
treatment, but I would like to be validated by my physician. I don't think
the attitude would be so casual if he had it. I have noticed that if I
need emergency help the mention of a blood borne pathogen gets you quick
service, especially if you are bleeding. I thank God every day that my
husband and sons are healthy, and I will survive this as I did the cancer
and all the other challenges in my life. If you have it you aren't alone!
You may look fine but if you feel rotten it isn't all in your head, find
some support and validation and keep fighting, life isn't over yet!!! I
intend to be around to see my grandson graduate from high school and my
granddaughter become president, [or a fairy princess she hasn't made up
her mind yet ]
Janet Rappe'
Salem.Or.
Treated at Kaizer Perm.[ Dr. Soloman]
Diagnosed 1991
Combo treatment 1999
Still fighting.
