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CLICK HERE FOR NATALIE COLE'S VIDEO INTERVIEW
A discussion with Larry King about her need for kidney transplantation after only 4 mo. of hepatitis C treatments!

 


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.

 

The opinions expressed on this page are solely those of the author and none of the information included is to be misconstrued as medical advice.

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Last Updated March 20, 2012