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Date Posted: 12:27:25 04/12/02 Fri
Author: Perry
Author Host/IP: netcache-1112.public.svc.webtv.net / 209.240.222.32
Subject: I just got some REALLY bad news - i'm numb :'(

I just got a phone call from my BEST girlfriend in the world - we have been like sisters for 30 years............she just found out she tested positive for hep c - i'm so upset - i talked to her for a LONG time and tried to calm her down, but ALL of you know how scary it is when you first find out. She lives in the San Francisco area so at least i could help by telling her to go see Dr. Wright (the BEST hepatologist in that area) who was MY doc when i was first diagnosed. My heart is aching right now.........

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Replies:

[> Re: I just got some REALLY bad news - i'm numb :'( -- sg, 12:54:29 04/12/02 Fri (Toronto-HSE-ppp3662660.sympatico.ca/65.95.153.17)

Hi Perry,

You can be a big support to her because you have travelled the path before her. You know what is ahead and what is available. Is she on the net? She may want to reach out to some of the BBs or a local support group.

You know that there are more options today than there were a very few short years ago. Its not all bleak, hard yes, but there is light at the end of the tunnel.

sg


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[> [> I was the first person she called.... -- Perry, 13:28:06 04/12/02 Fri (netcache-1112.public.svc.webtv.net/209.240.222.32)

She does have a computer so you may be meeting her here at Voices soon......right now she's hiding under te covers in bed trying to get over the initial shock. I've been trying to talk her into being tested for YEARS wth no success - i've always suspected she was infected, but even so i'm in shock too at the moment. You are proof of the light at the end of the tunnel - thanks for your support - hugs


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[> Re: I just got some REALLY bad news - i'm numb :'( -- Clarence, 13:08:52 04/12/02 Fri (d155.as0.rscm.mi.voyager.net/216.93.38.158)

I'm really sorry to hear that Perry,I hope you sent her to the board.This board is what is helping me cope,All these wonderful people and great support.What is your e-mail address if you don't mind,I have some ??? for you.


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[> [> Hi Clarence -- Perry, 13:30:23 04/12/02 Fri (netcache-1112.public.svc.webtv.net/209.240.222.32)

just click on my name - i don't mind at all...


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[> Perry -- Susie, 13:29:28 04/12/02 Fri (bgp425870bgs.union01.nj.comcast.net/68.36.197.75)

Your friend is lucky to have you to lead the way. I hope she visits with all of us here. Chin up, she needs you now.


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[> [> (((Susie))) - i told her about our hot-line number... -- Perry, 15:49:07 04/12/02 Fri (netcache-1112.public.svc.webtv.net/209.240.222.32)

Don't be surprised if you get a call - probly not for a few days.........right now we're BOTH hiding under the covers - oy vaaaaayyyyyyy!!!! Thanks, my friend.....


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[> (((Bonnie))) -- Scorpio, 13:53:15 04/12/02 Fri (12-227-56-48.client.attbi.com/12.227.56.48)

I don't know what made me check in today but I'm glad I did. I'm sooo sorry about your friend Sweetie. I know how worried you've been over this. I'm just glad that she has you to help her thru this. Which is something you are REALLY good at! Hugs & Smooches, Deb


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[> [> (((Deb))) i just wish she wasn't so far away... -- Perry, 15:51:51 04/12/02 Fri (netcache-1112.public.svc.webtv.net/209.240.222.32)

I just want to give her a big hug right now - you take care of yourself - k?


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[> aw shit... -- terry, 19:01:58 04/12/02 Fri (NoHost/66.84.232.144)

Sooo sorry to hear this. We know the feelings she's having well. And you know what she needs now. She's very lucky to have you as a friend. (((((Bonnie & Friend)))))


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[> [> yeah this really bites, doesn't it? -- Perry, 08:48:24 04/13/02 Sat (netcache-1112.public.svc.webtv.net/209.240.222.32)

Sorry i didn't get back here sooner, Terry.......i spent most of the afternoon yesterday getting contact info for her to see Dr. Wright (plus got the name of a back-up hep doc who came highly recommended). She and i were phoning back and forth - a million questions. I'll give her credit - she only hid under the covers for a few hours - then we both went into action dealing with getting her access to the BEST docs available (especially tricky because she has no insurance - oy!). Thanks for the hugs - we needed them.......smmmooooccccchhhhh!!!!


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[> [> [> Good for her (and you)...glad to see she's dealing with it so soon. -- terry, 16:56:44 04/13/02 Sat (NoHost/66.84.232.150)


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[> damn -- Anna, 21:18:30 04/12/02 Fri (ip68-1-115-246.pn.at.cox.net/68.1.115.246)

Sorry about your friend but she is indeed lucky. She has you to guide her. When I was diagnosed I had never heard of Hep C and had nobody around that knew what to tell me. I remember my fear very well, riding at night, letting the tears run silently down my cheeks, wondering if I'd ever see the scenery again. I honestly thought I was knocking on the door. Please tell your friend to come here. Big HUGS!


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[> [> (((Anna))) - i know....that's how it was when i was diagnosed..... -- Perry, 08:59:00 04/13/02 Sat (netcache-1112.public.svc.webtv.net/209.240.222.32)

It was 1989 and back then knowledge about HCV was almost zippo. I was lucky enough to be diagnosed by a very kind Gastro doc in Oakland who comforted me when i broke into tears right in his office and who knew enough to send me to Dr. Wright for what was, at the time, an experimental treatment with a drug called interferon. Dr. Wright was (and still is) on the cutting edge of HCV research. Well, we're BOTH still here, eh? All hugs are appreciated right now - hugs back


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[> She had a PCR yet? -- Junobear, 10:00:40 04/13/02 Sat (216-220-253-41.midmaine.com/216.220.253.41)

I nagged the pants off three old girlfriends to get tested and finally they did...and all of them lucked out big time.

The first two tested negative even for antibody. I know they were exposed over and over again 'cause we were best party buds for years. Now, how the hell did that happen? 'They say' once you're positive for antibody, you're postive for life. I think a lot of what 'they say,' they're not really sure of...

The third one was a normal ALT who tested positive for antibody. She kept asking and asking, "Is there any way the test can be wrong?" We all ask that one in the throes of panic, don't we?

I told her there was a 15% chance of spontaneous clearance and get a PCR to confirm because there was a chance [especially for normal ALT's] of landing in the lucky 15%. She went for the PCR before investing in an appointment with my specialist in Portland, and guess what? PCR was negative! She landed in the lucky 15% who are postive for antibody -- negative for presence of live virus without having to treat. I advised her to retest from time to time because undectected may or may not be the same as 'cured,' but at least for now she was in the clear. Needless to say, she was ecstatic.

The same thing happened to an R.N. from KY. She tested postive for antibody, spent several months accepting she had this, made an appointment with a specialist and the PCR comes back undetected.

Before your friend accepts that she has this, she needs to confirm the antibody test with the most senstive PCR she can find.

All of these friends were normal ALT's. Chances of landing in the lucky 15% are greater for normal ALT's -- close to zero for those whose ALT's are elevated. My doctor diagnoses active HCV infection based on 1) positive antibody and elevated ALT's, or 2) for normal ALT's, positive antibody and PCR to confirm presence of live virus.


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[> [> Good morning (((Juno))) -- Perry, 11:50:56 04/13/02 Sat (netcache-1112.public.svc.webtv.net/209.240.222.32)

No PCR yet - because she has no insurance she went to a free clinic. They tested her for HCV because her ALT & AST were elevated (about 150 - i forget the exact numbers she told me). When she went to the clinic yesterday she was not even able to speak to a doctor - they just told her she was positive and gave her a pamphlet on HCV. Now they want to send her to Highland Hospital in Oakland (a hell hole) for further testing. I've been to that hospital when i lived in Oakland and i wouldn't send my DOG there. I want her to have the BEST chance with all this sooooooo i talked to Tripod yesterday to get current contact info for Dr. Wright in SF - she is HIS doc and was also MY doc 12 years ago - the BEST in the area. I have a bad feeling about the condition of her liver but i'm hoping for the best. At LEAST i want her to have the best care. Thanks for your concern - hugs, B


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[> [> [> damn it! -- Junobear, 16:47:32 04/13/02 Sat (216-220-253-41.midmaine.com/216.220.253.41)

Elevated ALT's do not bode well for landing in the lucky 15%.

Aretha, eh? Old soul is the other half of my record collection. Dancing to old soul and da blues is the only way to dance! Bring some to the fest and we'll shake a tailfeather.


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[> [> [> Re: Doesn't Schering have a.... -- sg, 05:43:59 04/14/02 Sun (Toronto-HSE-ppp3660647.sympatico.ca/65.95.145.36)

Hi Perry,

Doesn't Schering have a program where they will provide the meds to people who cannot afford them. I remember reading something about the program they have. Maybe I'm wrong but I think they have something in place. It may be worthwhile checking this out for your friend.

sg


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[> Sooooooo sorry to hear that, Perrala! -- toosh, 22:36:41 04/13/02 Sat (dhcp024-209-033-060.neo.rr.com/24.209.33.60)

Best I can do is a biiiiiig hug!!



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[> [> That's EXACTLY what i needed - thanks, sis... -- Perry, 21:43:56 04/15/02 Mon (netcache-1112.public.svc.webtv.net/209.240.222.32)

I've been pretty bummed this weekend and haven't felt up to posting. but all hugs are greatly apprecated.......smmoocchh!!!


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[> I'm so sorry to hear about your friend. -- Cat, 10:16:48 04/14/02 Sun (01-048.046.popsite.net/64.24.231.48)

I know well what she is feeling. But she is very lucky to have YOU, and it sounds like you are going the extra mile for your bud. When we found out Ron had it, I had never heard of it.....(dumbass me)..... and there was no one to guide us. Your friend is lucky to have you. Big hugs for you both.


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[> [> Thanks for the hugs (((Cat))) -- Perry, 22:04:24 04/15/02 Mon (netcache-1112.public.svc.webtv.net/209.240.222.32)

Sorry it took me so long to get back here but i couldn't put 2 words together this weekend. The initial shock is wearing off. MAJOR bummer, huh? Hugs back....


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