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Re: Bad, bad news from the Liver biopsy.

Re: Bad, bad news from the Liver biopsy.

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Posted by thanbey on June 12, 2000 at 11:28:33:

In Reply to: Bad, bad news from the Liver biopsy...I desperately, desperately need encouraging words! posted by Tray on June 12, 2000 at 00:06:59:

: I don't know if anyone remembers that I posted a message recently about my husband undergoing a liver biopsy. Well, we got the results and it ain't good.

: Maybe you guys can clarify this for me. She said he between stage 3 and 4. That stage 4 is cirrhosis. Is that right? Is my memory right? He got Hep C probably about 20 years ago or so and he has drank VERY heavily over these years. He stopped drinking heavily about 5 years ago (down to a six pack a week, instead of a day). He stopped completely drinking about eight months ago.

: We started seeing a pretty good doctor. Supposedly, she's well-known. Her personality sucks, her name is Melissa Palmer. She wrote a book on liver disease.

: We are starting on the pegylated inteferon study (is that the right name for it?), along with Ribaviran. And of course, he has Genotype 1, the kind that does not respond well. Sorry if the spellings are not right.

: I left the office and told my husband that I would meet him outside. And I cried my eyes out. I cried and cried. Never did I expect her to say that his disease was as progressed as it is. We just found out about his hepatitis 5 months ago, how can this be?

: Please everyone respond to this message with some encouragement that my husband is not going to die from this? That he can have a long life with this disease.

: It's hard to cheer him up when everything I read is not good, it's depressing me, too.

: Thanks so much...I really need support and I'm extremely thankful to anyone who has the time to lend some words to help us get through this.

Dear Tray,

The stages of liver disease that you describe are in no way end stage liver disease. I am surprised that Dr. Palmer did not discus this with you in more detail. Be sure to call and follow up with her on your questions.

As to the decision to treat your husband with the Pegylated interferon, this may be the best choice for you. i rarely make statements of this nature, but the results of other studies have shown some good results for those with cirrhosis.

Try to remember that, at this point, you are fighting the cirrhosis. You are not fighting the viral load, so do not set yourself up to be looking at the VL numbers and be disappointed if he does not clear the virus altogether.

What you want is to stop the progression of the cirrhosis, or to reverse it (yes, reverse it!)

Cirrhosis is not a death sentence IF you are careful with the alcohol intake (none!) and you live a healthy life (good nutrition, moderate exercise)

If your husband had disability benefits, now is the time to find out what they are and prepare to use them if you must. Stress should be reduced.

If I am not mistaken, Dr. Palmer is an Infectious Diseases Specialist, not a Hepatologist. I have heard good things about her, but I do urge you to ask your questions and expect to receive answers you understand.

Please do not be intimidated by books and titles. I am listed in Who's Who in Healthcare and Medicine, and I have a book coming out next year on HCV.

By no means do I think I know everything, there is just too much to know at this point. So do your homework and find out as much as you can.

You can go to our homepage at www.hcop.org and click on favorite links to find a number of sites for more information, including your rights when it comes to being in a study.

A doctor is not a doctor when they put you in a study. they are an investigator and you are the subject. So, you might want to get a second opinion while you are in a study.

I hope this helps,

thanbey

www.hcop.org


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