Hepatitis C Support Group

Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.

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trying to understand hcv

drcopperhead
drcopperhead
ive had the virus 38yrs. dx in 2005. biopsy in 2006. i cant find any records of my biopsy results. ive been told my liver is fibrous. i finally found an "after visit summary" that mentioned genotype 1a. i failed 48wks interferon, riba therapy 2009-2010. most of my labs concerning hcv just say "its still there". and a VL. i had questions about just how severely fibrous my liver was. someone suggested calling the nurse # on the back of my ins. card. did that. the guy told me a nurse would call me back in 10mins. an hour and 10mins later i called him back. he was all sorry of course because his callback was already an hour late. he told me someone would call me in ten minutes. an hour later i got a call from the nurse and of course she had no answers. i have to talk to my doc about labs. labs r fucking labs. can i tell how scarred my liver is from the virus after 38yrs? and how do i know what they mean when they say my liver is fibrous(scarred)? can i tell from the labs? nobody will explain to me. so my liver doc wants a colonoscopy and a liver ultrasound this yr. i doubt i will do either unless i get some better answers from these people. i had the letter about setting up the colonoscopy. i called that # thinking it was his nurse. leave a message. another hour wasted (i did rearrange my bedroom) waiting for a call back. its the fucking schedule nurse. at least i can let my doc know i dont want the colonoscopy. what good is a blood test if i cant read it? it looks alright but im no doctor. plus i havent been tested since 5/2013. i just want to burn all this paperwork crap. so i waste 4hrs today and learned nothing
drcopperhead
drcopperhead
i have piles of bloodwork. my last one was 5/28/2013. geno 1a. i found that. ast-28, alt-33, 1.8 less than 6.0i have a tumor marker test from 9/30/2011- 1.8 less than 6.0
Trissa01
Trissa01
There is no solid boundary as to degree, even if they took your liver out & sent it to pathology.

The important matter is how your liver is functioning. Thats why the importance on labs & tests. A physical exam will give the practitioner an idea, but nothing guaranteed. A biopsy doesn't show the whole liver either. A combination of all these things, they can conclude stage. There is overlap.
Is your question "what does fibrous mean"? Scarring, tough tissue that doesn't function. How do labs relate to that? They indicate how well your liver is functioning.
Does this help?
WarriorGal
WarriorGal
Dr. C:

I have had 3 biopsies, Fibrosure and Fibroscan... some show almost NO fibrosis and some show stage 3, "severe fibrosis." It's an ART, not a science and a lot of guess work and combing test results as Trissa said. Platelets are very telling.

I've never had a colonoscopy in relation to my HCV. It's never ben mentioned as a diagnostic tool for that. I would ask very specifically what he is looking for on a colonoscopy - is it just ROUTINE because of your age? Endoscopy is being used a small number of docs to determine damage caused by cirrhosis, but not many.

Like me, it sounds like you are NOT cirrhotic and that's good!

From this point forward, I would ask for copies of all of your labs and tests. You have a right to them and cannot be refused. I find it good to get them myself in case I need to switch doctors or whatever. And also to see progress or progression...

.
allaboutliving
allaboutliving
You have HCV. Your Dr. at some point will want you to do tx again. Your numbers are important for baseline & determining how the disease is progressing for you. I understand the frustration of failing tx & dealing with this stuff & you deserve knowledgeable answers from the people treating you. Sometimes the nurses & staff aren't as informed as the docs but demanding answers to your questions is the only way to be informed of what is happening to you. I sometimes think I'm like the old adage "the greasy wheel gets the grease" & no question is a stupid question. Try not to be discouraged. This stuff is complicated. Patience is important & I am short on it sometimes. I hope you don't get discouraged so that you get answers that make sense to you. The tests they are asking for are not unreasonable. Take a breath & keep your focus on the best health you can have.
drcopperhead
drcopperhead
Garry Owen, 7th cavalry march. http://www.youtube.com/watch?v=dQIml1MpxfQ
drcopperhead
drcopperhead
i get lab copies from the lab. i still have kids toys(just the good stuff). all the shit my ex left. my kids stuff. a bunch of my moms stuff. divorce shit, taxes. on and on, i got 1350sq. ft. but its full. thats not so bad but i got all my stuff. work, live alone. its just my mood after wasting time today with our healthcare industrial complex. its horrible. just my opinion.
drcopperhead
drcopperhead
the colonoscopy is routine. 5yrs. i had one before treatment. y treat me for hep c if i have colon cancer. im 57. age thing.
drcopperhead
drcopperhead
i was reading about the severity of the scarring(fibrous) from mild to severe. how do they tell that? labs. so mostly what they care about is that your liver is functioning properly? i guess they can see scar tissue with the ultrasound. y dont i have results from my last ultrasound? that wasnt that long ago. i have a billion lab reports because during treatment i was having tests every week. i just have more mess to go through. i did change my bedroom today. never had it this way in almost 15yrs. head to the east. i think i like it. thank you for your help.
Trissa01
Trissa01
Your question:
> how do they tell that? labs. so mostly what they care about is that your liver is functioning properly?<
Yes! The amazing liver can adapt to adverse conditions. It can function on a tiny remnant. However, so long as you still have hcv, it will continue to beat the crap out of your liver.
Fight back with everything you have. Lifestyle, nutrition, exercise and stay away from toxins. Treat for hcv when you can.
deleted_user
deleted_user
Dr C

Now that you've rearranged your bedroom, why not go for another room as well? Maybe paint the bathroom?

Take your mind off the aggravation & love the results of your work.

I wonder if you need ALL the lab repts from 1st treatment.. Maybe beginning, middle and end, and important stuff like ultrasounds, etc. Give you another project to do, & neaten things up.
drcopperhead
drcopperhead
i sorted the labs from '09-'10 last night. i like the idea of getting rid of them. although they do document the side effects. u wonderful people have been very helpful. i cant find any ultrasound results so far. im not doing the talk to the "medical industrial complex" today. that would b a downer and i feel good. i watched a swami from india one time talking about y its best not to sleep with your head to the north(if u r in the northern hemisphere). it was kinda loony but i figure what i got to lose? ive never had my bed that way since ive lived here, long time, and i actually slept good. huh? i found a box and im starting with my kids stuff. empty one box and u have your next box, etc. to infinity. im happy with my labs. i think my liver is still chugging along. ill get tested again this yr in june she said yesterday. ill put a call in to my liver nurse(shes really a sweetheart, with her standing in the exam room once i told my doc to give her a raise. hehe) one of these days. i dont know about today though.
drcopperhead
drcopperhead
u ladies r so sweet
WarriorGal
WarriorGal
have you called the imaging center where the ultrasound was done? they should be able to provide you a copy of the report, if your doc's office can't.

As I said, other tests that determine stage of fibrosis are fibrosure and fibroscan, but none are definitive.

I read an article once that said cleaning out closests etc helps us clear our minds!!
drcopperhead
drcopperhead
i need one of those professional organizers. Conan Forces Jordan Schlansky To Clean His Filthy Office, http://www.youtube.com/watch?v=lWctcNBs2qQ
deleted_user
deleted_user
I'm trying to understand all the new drugs. I try to read and understand but I was never good at studying.