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Author Topic: Newly diagnosed 8/19 HEP C please help!! :(  (Read 10866 times)

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Offline Feeling hopeless

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Newly diagnosed 8/19 HEP C please help!! :(
« on: August 21, 2014, 04:17:59 pm »
Got the call Tuesday afternoon from my OB/GYN. calling with all my infectious disease results as i have always done them yearly cause i am an RN in the medical field. I almost DIED i had 2 hours left of work and it was the hardest thing to digest while having to still work.  All negative but my Hep C came back "reactive" I cant fathom how I have contracted this disease. Yes I handle blood and always take precautions also never had a needle stick or ever have blood splash in my face. I work in a field where we RARELY see ID patients. I was just tested back in Jan of 2013 and ALL was negative. I recently got a new tattoo this march14'  and can only think that maybe it came from there? Although when I was there I was neurotic about asking them to show me everything the clean needles the new ink everything. I am extremely upset about this diagnosis. I have a 4 year old son who I am now more worried about more then ever. regardless of how I contracted this nightmare. I am absolutely heartbroken. I've been in a monogamous relationship for over a year and he tested negative for everything. My MD was able to add on My liver enzymes to the tube of blood I had drawn and they were normal (is this a good sign?) and my viral load is not back yet. I am sick to my stomach not eating, barely sleeping and a complete wreck. IM terrified I am going to have a high viral load, I am terrified ill not respond to treatment, I'm terrified ill pass this to a loved one. I'm so upset I wont be able to have unprotected sex with my fiance. Someone please help me spread light on this awful disease I am heartbroken and in tears as I write this. I'm praying for a negative viral load but I've been told that's rare. and totally not my luck. Someone help  :(    I know there is a chance I could eventually show a neg viral load after treatment but what are the chances? I'm 32 young healthy.....I'm so scared. haven't stopped praying. and wont.
hopeless!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Newly diagnosed 8/19 HEP C please help!! :(
« Reply #1 on: August 22, 2014, 01:02:48 pm »
Hi,
Most of us go to these worse case fears, but as a nurse who lived with hep C for 25 years, I can assure you, all this will be better soon - regardless of the outcome. So, let's start with some basics:
1) Yes, it is a good thing that your enzymes are elevated - although liver enzymes aren't always elevated with hep C, it does make me more hopeful that this reactive test is either a false negative, or you had an exposure and cleared it.
2) 40% of women under age 40 will clear hep C on its own - so in your case, hoping for a non-detectable viral load is realistic.
3) Hep C is completely curable, and the treatment is easy. We'll talk about that later if it comes to this, but let's cross that bridge when we get to it.
4) Hep C is not easily passed, so I am not at all concerned about your son. We'll cross that bridge later if we need to.
5) Ditto on sex. Unless you are having sex with knives and chain saws, it is pretty unlikely that is a cause for concern.
 6) Take a breath. You are not alone. This will work out. Don't scour the internet for info - get the results first, then talk to us. In the meantime, if you cut yourself, use a band-aid. Clean up blood spills. Don't drink alcohol. go Enjoy that 4 year old.
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

Offline Mike

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Re: Newly diagnosed 8/19 HEP C please help!! :(
« Reply #2 on: August 22, 2014, 04:46:52 pm »
Hi Feeling Hopeless,

Lucinda gave you some really good information and advice. She's is a true expert

I know it is very scary being diagnosed with a Hep-C infection. We have all been there and can share the experience.

Hep-C is very curable, however, and the treatment is very, very manageable.

It's not like the old days, when treatment was long (48 weeks) and extremely trying to say the least.

Hang in there. You've found a great forum with some great folks.

Please feel free to ask any question you might have, and someone here will be able to answer it.

Cheer up! You'll get through this!

Sincerely,

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Feeling hopeless

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  • Posts: 10
Re: Newly diagnosed 8/19 HEP C please help!! :(
« Reply #3 on: August 22, 2014, 07:10:54 pm »
Lucinda Porter I am so happy that you found my post and replied! I have seen what you have responded to others and feel you have a lot of great things to say and seem extremely educated. Thank you! I had my viral load tested today at an infectious disease doc now just waiting for results. Early next week. She was great and answered all my questions. I'm praying for a negative viral load. Praying but if it is positive I then worry about the  genetype (sp?) I have! Ugh worry after worry. I'm scared of having the hardest one to treat. If you haven't noticed I also suffer from anxiety and have since 2007. Its very hard to JUST STOP WORRYING I wish I could shut it off like a switch. im torturing myself wondering and twisting my brain trying to figure out how I contracted this. and I MAY NEVER know! and that's what's even worse! Lucinda, you say you have been living with hep c for 25 years? are u "cured"? and say you are diagnosed positive viral load, your treated and it goes back down to not detectable....what happens then? you are considered cured? but can it come back on its own? That same hep c virus? and how often do they check you once not detectable.? Sorry for all the questions I didn't get to ask my doc these this am!

Mike thanks for your reply as well! you seem equally as knowledgeable and I think its great you guys are here to talk to people who are scared and newly diagnosed! Thanks thanks thanks!

Offline Mike

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  • Posts: 999
Re: Newly diagnosed 8/19 HEP C please help!! :(
« Reply #4 on: August 22, 2014, 08:24:25 pm »
Hi Feeling Hopeless,

Lucinda is a true angel and a mentor to all of us. I've learned so much from her and her advice is priceless.

Hang in there and try not to worry. Take it one step at a time.

Best, best wishes,

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Newly diagnosed 8/19 HEP C please help!! :(
« Reply #5 on: August 23, 2014, 01:50:17 am »
Hi Feeling Hopeless,
I am cured, It can't come back on its own, but I could get it again if I was exposed again.
Even more important, is that I am also free of anxiety and depression - something I lived with for more than 20 years. That is something that I am even more grateful to be rid of. I don;t feel that I am cured of anxiety - just in long-term remission (it's been 26 years since I've had any major attacks). I hope for you that you find help for that.
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

Offline Feeling hopeless

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  • Posts: 10
Re: Newly diagnosed 8/19 HEP C please help!! :(
« Reply #6 on: August 25, 2014, 01:14:22 pm »
Ok all, now I'm more confused then ever. My original test for HVC antibodies was Tuesday the 19th. I ended up going to the ID this past Friday who repeated that same test and drew a viral load. I called today to see if any of it was back and it turns out only half the tests were back. Still waiting on my viral load but the HCV antibody came back NON reactive. Quite a different result then the one I got a week ago. Still waiting on the viral load like I said but she said this is very good and that the chances my VL will be positive is low. How can one get a false positive? and what does this mean? I'm confused. Obviously if my Hep C viral load comes back not detected then I am not infected with Hep C that I understand but I am still a bit anxious and wondering how I got a positive to begin with? and does this non reactive test sound promising? 

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Newly diagnosed 8/19 HEP C please help!! :(
« Reply #7 on: August 25, 2014, 03:16:24 pm »
For those following this, I messaged Feeling Hopeless and told her that those who are at low risk for hep C are more likely to have a false-positive hep C antibody result than those who are a high risk for hep C. In short, it looking like Feeling Hopeless has reason to feel hopeful again. 
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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