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Author Topic: Diagnosed a week ago and feeling confused and scared  (Read 11716 times)

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Offline ksgram10

  • Newbie
  • Posts: 2
Diagnosed a week ago and feeling confused and scared
« on: September 16, 2013, 09:08:54 pm »
I was recently admitted to the hospital with a severe headache, stiff neck and flu-like symptoms, including fever.  The doctors worked me up for tick-born diseases since I had gotten bit by a tick a couple of months ago.  The work up included a spinal tap.  After six more days of tests and my fever finally breaking, a doctor walked into my room and said (in front of my 20 y/o daughter and my boyfriend of 4 years) - "has anyone talked to you about your hepatitis?" totally catching me off guard.  He stated that my tests showed that I have been exposed to hep c and that further tests were being done to find out if I actually have it or what exactly I'm dealing with.  They did an ultrasound of my liver which showed a fatty liver which he said it could be because I'm overweight - but no signs of cirrhosis.  As I've spent the last week trying to figure out where I could have gotten this and/or when, my newest question/concern is - how do you handle talking to people about this? I haven't returned to work yet and I know I'm going to be going to follow-up appts starting next week regarding this new diagnosis and I don't know what to tell my boss.  Those closest to me know what's going on, but my "work family" does not.  I work in the same hospital that I was diagnosed at and have for 18 years so we are a close knit group but I feel like this is something I don't want everyone to know.  Back to my trying to figure out where I got this, the only thing that has happened in the last year (when I had my last routine blood tests were my liver functions were normal) is that I had to have an ACL replacement in my knee and this was done with a cadaver graft (allograft).  I'm at a loss, and the more I'm reading about this, the more I'm realizing I shouldn't be spending so much time trying to figure out where I got it and to focus on treatment options, so that's what I'm trying to do.  I apologize for the ramble, but this is the first time I've put this into words....

Offline flower-child-68

  • Member
  • Posts: 13
Re: Diagnosed a week ago and feeling confused and scared
« Reply #1 on: September 17, 2013, 09:46:01 am »
hi ksgram,

thanks for sharing your story. hopefully just putting it out there has you feeling better. i'ts great news that you aren't showing any signs of cirrhosis. i'm not a treatment guru but i'm fairly certain you have time to come to terms with the diagnosis and make treatment decisions. as i'm sure you've read there are lots of a better treatments coming soon.

definitely take your time before making decisions on who you tell what to. it's a personal thing and once its out there, there is no taking it back.

Offline ksgram10

  • Newbie
  • Posts: 2
Re: Diagnosed a week ago and feeling confused and scared
« Reply #2 on: September 17, 2013, 02:11:32 pm »
I just got word that my RNA/PCR tests came back as "not detected".  I am hoping that means what I think it means....afraid to get too happy but feeling much better than I did. 

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Diagnosed a week ago and feeling confused and scared
« Reply #3 on: September 17, 2013, 11:37:12 pm »
1st, that is good news, but while it seems strange it is not unprecedented. Some 15% of the people exposed to Hep C clear the virus naturally. Or, a test was wrong. I would do another Quant test in 3 months, and if that is also UD, you don't have Hep C.  Good luck and let us know.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Diagnosed a week ago and feeling confused and scared
« Reply #4 on: September 18, 2013, 09:41:37 pm »
I was just going to tell you that you needed a viral load, and there were your results. I am pretty certain this is accurate since a) your liver enzymes are normal, b) 40% of women spontaneously clear hep C, and 3) you have no known risk factors. You will likely always have the HCV antibody, so you need to keep those viral load records to prove you don't have hep C. I would feel happy - I don't think you need to repeat the test, but if your insurance covers it, it wouldn't hurt. Lucinda
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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