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Sandra's Story

I was diagnosed with HCV in 1997. My liver was slightly elevated during a reg. exam so I was tested for the virus. My doctor called me at work and gave me the bad news over the telephone, if you can believe that. She then referred me to a liver specialist. He set me up for a biopsy which hurt like hell. When he gave me the results, it didn't sound too bad. He told me the damage to my liver was so minimal that he would not recommend treatment at that time because of the bad side affects. He just said to have reg. blood tests every year and to come back in two or three years for another biopsy. Neither one of my doctors bothered to sit down with me to discuss exactly what was in my biopsy, about my alt or ast or anthing that other heppers seem to know. So even though it's been about 5 years I'm still confused about certain things.

I went to another liver specialist about two years later and he told me they did biopsies every 5 years. Well, about six months ago, My feet, ankles, and legs started swelling. When I couldn't stand it anymore, I went to the emergency because I didn't have insurance. They ran tests. My count was normal but they thought the swelling was caused from the HCV. They referred me to the internal medicine clinic. I found out there that the protein in my liver was low. The docs in the emergency room didn't tell me this. I was started on fluid pills, sent for ultrasound, which showed a fatty liver, and a heart echo which was normal. He said he was going to set me up at the liver clinic. Well, I have an appointment in the surgical clinic with a liver doctor in Aug. My reg. medical doctor set up the appointment because this doctor seemed to have dropped the ball. I still can't get in touch with him. My semi-retired liver doctor is recommending another biopsy. By the way, he advised me not to go on the internet for info because all it was was pharmacuetical companies trying to make money.

He too, seems to make light of my situation and has not really sat down with me to go over numbers what anything meant or anything. I did stop by and got a copy of my medical records. In it was a letter from my first biopsy. It said I have mild activity with minimal piecemeal necrosis and a mild increase in fibrosis in the portal tracts, but no bridging fibrosis. Now what does that mean? I just recently found out via the internet that biopsies are done by grading. No one ever explained any of this to me. Is there anyone who can tell me, and if I should have been offered treatment. It seems to me alot of heppers were given treatment even without biopsies. What's the difference. Thanks for allowing me to vent my frustrations.

Looking forward to hearing from somebody. Please email me at Kountrygirl042@earthlink.net

 

 

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    Page last updated: March 7, 2003


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