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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bestshot 09/27/2012

Wow, am I ever feeling (excuse the language tonight) fucked up!!!! I will try to explain is as good as I can but do to brain fog and justed being totally in shock and confussed not sure how good it will be. Anyway, back when I started treatment in March I was told by my hep nurse that I would definately have to be on tx for 48 weeks. Unless at week 24 the viral load comes back detectable.If that's the case I would have to stop taking the meds all together. I was also told that I have liver damage stage 2 level3 I believe. Well about 3 or 4 weeks ago they changed hep nurses on me.I haven't met the new one but have had several chats on the phone with her. I went for my 24 week v/l test and the lab screwed it up. So off I go again to have them redone. That was about 2 1/2 weeks ago. So, I get a call from the new nurse today and she informs me that I am now detectable but the numbers are very very low between 10 - 15. But she tells me I still have to finnish the tx due to the STAGE 4 CIRROSIS OF THE LIVER that I have!!!!!!!!!!!!!!!!!!!! What the fuck!!!!!!!!!!!!!!! I am so confussed and scared right now I am just beside myself. She was surprised that I said I didn't know I had cirrosis.I just opened up my email and there was a message from her and more forms for blood tests again. She thinks that maybe there may have been another errror. Stage 4 isn't that like the end of the line?? I hope this all makes sense to you. Sure doesn't to me. And so sorry for the language. Any input will be greatly appreciated. Please don't hold back.
BTW still no Louie!! I could sure use a cuddle from hin right now.
Very scared and frustrated!!!!
Debbie

joemz20 09/27/2012

Yikes, this is a crappy story

But I wonder, do you have actual copies of blood tests and biopsy's, or are you counting on non-physician interpretation of the data?

ladyladyrrose 09/27/2012

So sorry to hear of all the f--- ups. I would seriously consider sitting down face to face with your doctor and setting the record straight. Mistakes are made and files and lab tests get screwed up. Some nurses are more savvy than others about treatment and the disease. I know that even I heard some mixed messages while going through tx but got things straightened out. Write things down and ask. Best of luck to you.

MrOSO 09/27/2012

Hi Debbie,
I can only imagine how badly you must feel right now. I will echo what others have said, keep putting one foot in front of the other, and schedule a sit down with your doctor as soon as possible.

Bob

bestshot 09/27/2012

Hi Joe, I don't have copies but have seem some of the results. I will make sure I get copies of everything. And these are suppose to be special trained Hep nurses. HA

joemz20 09/27/2012

when i got my svr news today i sent a note thanking the doctor for managing the side effects, AND for putting up with my stream of emails

Quest would send me the blood work, and i'd compare week to week and question everything. Same with any radiology work

Having your own medical records doesn't make you healthier, but it helps reduce the BS around different interpretations by different people. like a biopsy report, or mri, once you get thru the technical info, has a summary that is what you want to see. You want to see what the doctor says, not someone elses interpretation

best of luck, joe

deleted_user 09/28/2012

If you're 1/2 way through 48 week, you've been treated for 6 months. You said you had stage 2 liver damage. They're screwing up your numbers, so ask to see the test yourself.

What I don't get is how do they know you now are stage 4 and have cirrhosis? You didn't mention having a biopsy or a fibroscan test. How do they know this? And how did you go from stage 2 to stage 4 in 6 measly months? Did you have a liver test??

I'm with you, something is not right. Ask for your test reports to be emailed (oh yeah, they can scan them in and send them to you) or faxed at the very least.

This is your life and your emotions. I'm sorry someone is being so laxidaisical about this.

bestshot 09/29/2012

Hi Hepcat, from what I now understand I have been stage 3 bordering on 4 cirossis. I had a biopsy done two summers ago. Apparently I was told then. I don't know maybe I blocked it out!!!! Have an appointment with the actual hep Dr. on Oct 11th (Ithink, will have to check the date again, dam brain fog). I will be asking many questions then, They made me take the bt v/l bt test again,try number 3 due to the fact the numbers were so close to being undetectabe.Still alittle confused.my head is trying to comprehend everythink. Still no Louie. I guess it's time to pick up his dishes!!! Big tears again. Oh and just to add more salt to the would an old friend on mine died Thursday. How much lower can I go.

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