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Author Topic: Terrified..  (Read 25509 times)

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Offline TracyL

  • Member
  • Posts: 16
Terrified..
« on: August 30, 2014, 09:17:38 pm »

I just received notice that I have tested positive for hcv antibodies after donating blood. I donated blood 1 year ago and all was well. I had gotten a tattoo at a popular place about 3 months before. I have never done drugs, have never had a transfusion or anything so the tattoo is the only thing I can think of. I am rarely sick. I am happily married and have 3 children. This news has devastated me. I have always been anxious so now this is all I think of. I am scared of dying and leaving my family.  I have read different things on the internet and I dont think that was the best thing for me to do. I have an appt with my family dr next week for more test.  Im sorry to ramble on but I am really scared. Any input is greatly appreciated. I feel fine health wise and I dont know whether to be thankful that I found out so early or would be better not knowing.

Offline Pelham123

  • Member
  • Posts: 70
  • Genotype 2 - Tx Sovaldi/Riba
Re: Terrified..
« Reply #1 on: August 31, 2014, 09:14:34 am »
TracyL, welcome!  This is hard news to hear.  Believe me, we have all felt scared.  But,  You are going to be fine.  You found out quickly!  It's better knowing because you can get rid of it!  HCV is slow moving.  I had it for 40 years without knowing, and had no symptoms. 

There are great meds that were released this year, and some coming in October, and 2015.  Please read up about Sovaldi, Daklinza, and Olysio.  I'm half way through 12 weeks of treatment, and tested negative for the virus at week 4. 

The best way to help your anxiety is to get educated about the virus. 

Offline TracyL

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  • Posts: 16
Re: Terrified..
« Reply #2 on: August 31, 2014, 10:25:29 am »
Thank you for replying!  This news has been really hard for me to process.  I have read where others have been told the have 3-5 years to live.  That terrifies me!   

Offline Pelham123

  • Member
  • Posts: 70
  • Genotype 2 - Tx Sovaldi/Riba
Re: Terrified..
« Reply #3 on: August 31, 2014, 01:52:56 pm »
Tracy, I asked my Dr. Yesterday about these dismal life expectancy statistics.  Keep in mind I've had it for 40 years.  He said once the virus is out of my system, I have the life expectancy of any 60 year old.  Those statistics may relate to people who have advanced liver disease.  Not you! 

Offline TracyL

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  • Posts: 16
Re: Terrified..
« Reply #4 on: August 31, 2014, 05:30:06 pm »
Do the meds seem to work well for most patients?   I'm really trying not to stress about it but its all I think about.  I've read that some of the meds really take a toll on some. Im willing to do anything to do anything tho.

Offline Pelham123

  • Member
  • Posts: 70
  • Genotype 2 - Tx Sovaldi/Riba
Re: Terrified..
« Reply #5 on: August 31, 2014, 07:39:15 pm »
The new medications are getting great results, and less likely to cause severe side effects.  But, even  the new 2014 meds cause some people problems.  On the other hand, Not everyone gets side effects.  For example, I haven't had anything beyond insomnia, and forgetfulness.   

You won't know what medications to take until you have a 'genotype' blood test.  Once you know that, the Dr. will explain what to expect, or you can look it up.

Tracy, I get it!  When I found out I felt like I'd been catapulted into the future.  It's not like that.   This is just another chapter in your long life. 
« Last Edit: August 31, 2014, 07:41:00 pm by Pelham123 »

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Terrified..
« Reply #6 on: August 31, 2014, 08:09:49 pm »
Tracey,
Maybe my experience can help you with this. When I first got Hepc over 43 years ago I got symptoms of fatigue and my urine was quite dark for a few days. Then it all went away and I felt normal. This usually happens to a lot of people, it may take a few months for the first symptoms to appear and then fade. Then they appeared slowly, but with a dull pain in my liver, after about 5 years. I discovered ways with alternative medicines (herbs and teas) to feel well and "slow" the progress of the disease but it is inevitable that it will eventally damage the liver tissue. It took 43 years for me to reach stage 3 fibrosis-bridging. Now I got treatment going, and thank God the treatments are now with great results. The old treatments terrified me, but the new ones
are worth their weight in gold.
In short words, don't be to worried, you have time to find out the facts, and knowledge that the treatments are wonderful now, and getting better. The worse thing to do is nothing.
Thanks

Offline TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #7 on: September 01, 2014, 09:27:51 am »
Thank y'all for your replies. It has helped hearing that this is something I can deal with and do something about.  Is hep c normally slow progressing for everybody?

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Terrified..
« Reply #8 on: September 01, 2014, 09:40:08 am »
Yes, It s slow,  Some slower, and depends on life style, drinking or drugs.
Some it never does damage, some, (about 15%) will actually heal by itself.
The immune system is strong enough on some people. Building up your immune system with key items is a good idea. But do get checked out, awareness is very important. Error on the side of caution is my saying.

Offline rantrandom

  • Newbie
  • Posts: 1
Re: Terrified..
« Reply #9 on: September 01, 2014, 11:43:56 am »
Hi, I know the diagnosis is shocking but I am another who had hepC for at least 20 years before I was ever diagnosed in 2004. I have generalized anxiety disorder and was sure I was at deaths door and equally terrified of the meds. I ended up having the least amount of liver damage one can have, making it through combo peg-interferon & ribavarin treatment without missing ANY work time, and cleared the virus completely. That was 10 years ago & the bugger is still gone. I rarely think about my Hep experience anymore but recently a good friend was diagnosed and reminded me. Thought I'd read up on the new meds and found this board. Waiting for the initial test results (genotype, viral load, biopsy to determine extent of liver damage -if any) is truly excruciating! Once you know exactly what your own situation is you'll feel more empowered. Hang in there! It's not a death sentence.

Offline TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #10 on: September 01, 2014, 03:04:19 pm »
Thanks! I'm trying.  My anxiety gets the best of me and I've have had a hard time eating the past few days bc of my nerves.   When I donated blood around May 2013 everything was fine and this year I tested positive for antibodies.  I hope to be able to help others someday the way they you all have helped me.

Offline TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #11 on: September 02, 2014, 02:46:23 am »
Hey guys, I have woke up with a panic attack. I have xanex but am afraid to take bc I dont want to affect my liver.  I have tried rereading all you guys have told me and it does help. Im so scared of having a type that can't be cured. Im thinking of trying to move my dr appt up so I can get this started right away. .

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Terrified..
« Reply #12 on: September 02, 2014, 03:13:07 am »
hi, if you feel like your uncomfortable in your own skin or like a dog chasing his tail or dwelling like hell,what would i do?i would take a half of the xanax, have some warm tea with honey and wait an hour and see how it goes,,, if still freaking take other half, at this point its not going to ruin your liver but it is going to help your panic attack,and just because the bottle says 4 a day or whatever doesnt mean you have to take the 4. its controled for a reason but like i suggested if it were ME id try it and as you go awhile figuring out this disease and staying on this site you will see theres no reason to feel like your life is ending. its a new medical journey for you and those ghost storys you here out there are generally hogwash so relax, breathe in and out, talk to the creator and know in your heart this is just a hurdle in your life. im not a dr. and its just my opinion and i have been in treatment for 6 weeks and i like you a few months back knew nothing but once i started learning my feelings got better with the folks on this site. good luck, geno 1 25million etc.  willie g

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Terrified..
« Reply #13 on: September 02, 2014, 09:26:36 am »
Hi TracyL,
I know you are scared, but you said one important thing that should not be overlooked--you test positive for HCV antibodies. This means you don't know if you have hep C. You don't say your age and you have a gender non-specific name, but if you are a woman, you have a 40% chance of not having hep C; 19% if you are a man. These chance drop if you are significantly older (50+).

Also, you could have had a false-positive antibody test.

So, the next step is to get the facts-an HCV viral load. Personally, I don't think it is worth the anxiety, given your only risk factor is the tattoo. But telling someone not to be anxious is like telling someone not to scratch - an itch is an itch. Xanax, taken as prescribed won't hurt your liver. In the meantime, avoid alcohol. Let us know the results. Hoping you won't need us.
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 TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #14 on: September 02, 2014, 09:41:49 am »
Hello. I just called the place where I donated blood and spoke with one of the ladies there. I was positive for antibodies on both screening test but the RNA test was negative. I am on my way to my pcp for my appt.  I really dont understand what this could mean.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Terrified..
« Reply #15 on: September 02, 2014, 09:48:24 am »
Since you are on your way to your PCP, I am hoping you will get a good explanation, but here is a quick attempt:
1) Antibodies are not the virus - they are indicators of a possible exposure. You can have antibodies but not have hep C
2) You can have a false antibody test, meaning you weren't exposed at all
3) You can have HCV antibodies and also have HCV (the actual virus)

Your doc will order a viral load test (aka HCV RNA). If it is non-detectable, you don't have HCV
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 TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #16 on: September 02, 2014, 08:05:48 pm »
How sensitive is the rna testing?  If results are negative the first time what are the chances of it being positive the 2nd testing?  Sorry for so many questions...

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Terrified..
« Reply #17 on: September 02, 2014, 08:24:48 pm »
It depends on why the test was antibody +. However, the first thing to find out is the viral load results. That is the important one.
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 TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #18 on: September 03, 2014, 07:50:30 am »
If I had the hep c virus for an extended amount of time would the antibodies have shown up in 2013 when I donated blood?  I worked at a hospital from 2001-2011 but never had any needle sticks or anything.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Terrified..
« Reply #19 on: September 03, 2014, 09:05:17 am »
Yes they would have.
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 TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #20 on: September 04, 2014, 04:51:28 pm »
Im still waiting on my lab results and feeling very depressed.  My pcp seem to think the negative RNA is a good thing.  The fear of the unknown is horrible.   Im afraid that if I have hcv that it wont be treatable.

Offline Mike

  • Member
  • Posts: 999
Re: Terrified..
« Reply #21 on: September 04, 2014, 05:31:28 pm »
Hi Tracy,

A negative RNA test is great news. It means there are no detectable viruses in your system!

Regarding treatment, please be assured that the treatment is very, very effective and
a cure is there, should you need it!

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

Offline TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #22 on: September 04, 2014, 05:39:59 pm »
Hi Mike, The lab where I donated blood received the neg RNA. Is there a probable chance the RNA will be negative on my next results?  I gave blood a year ago and all was fine. This year I tested positive for the EIA and CIA? antibody test.  I dont understand how I could have contracted this.

Offline Mike

  • Member
  • Posts: 999
Re: Terrified..
« Reply #23 on: September 04, 2014, 05:50:35 pm »
Hi Tracy,

Testing positive for the Hep-C antibody is not the same as "contracting" the virus.

A positive Hep-C antibody tests simply means you were exposed to the virus (please note you can have a false positive Hep-C antibody test. There could also have been a mistake at the lab and so on).

Regardless, a negative RNA tests means you don't have an infection, which is great!

There is a very, very high probability that the second RNA test will be negative, which should lay any of your concerns to rest.

Best wishes, Mike

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

Offline TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #24 on: September 05, 2014, 07:51:22 am »
Mike,  the lady at the blood center where I donated said they didn't do a quantitative rna. Would that mean the rca they performed was the qualitative and is that test pretty accurate?

Offline Mike

  • Member
  • Posts: 999
Re: Terrified..
« Reply #25 on: September 05, 2014, 03:29:11 pm »
Yes. Either of these tests should be accurate in detecting the virus.

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

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Terrified..
« Reply #26 on: September 08, 2014, 02:32:21 pm »
hey TRACYL hows it going today? I was just in the vicinity and thought id give you a shout  SHOUT!!!!!!!!!!!!!!  hows that?    have a good week my friend willie g

Offline TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #27 on: September 08, 2014, 02:57:58 pm »
Hi Willie g. Still waiting on test results and trying to keep it together.  Found out that the blood donation center did a NAT RCA that was negative.  Praying that the next results will be negative too.  Hope you are doing well.

Offline willie g

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  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Terrified..
« Reply #28 on: September 08, 2014, 03:19:33 pm »
hey, go to the section where they break down the sections, like hep c story, private forum etc. and find my latest posting   willie g  I started it as a new topic  let me know if you get it, its about my dog  lol  willie g

Offline TracyL

  • Member
  • Posts: 16
Re: Terrified..
« Reply #29 on: September 10, 2014, 11:03:24 am »
I had my hep panel done on 9/2. They went ahead and tested for Hep A, B, and C. They are now telling me that it may be next Monday before they are back. They sent it to Lab Corp.  Could this be a bad sign that they aren't back yet. I just need the results. I stay on the verge of tears all the time. My nerves are shot.

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Terrified..
« Reply #30 on: September 10, 2014, 11:43:55 am »
Not a bad sign at all
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

  • Member
  • Posts: 999
Re: Terrified..
« Reply #31 on: September 10, 2014, 11:50:32 am »
Hi Tracy,

It can take a couple weeks to get the panel back. Nothing to worry about.

Keep your chin up. You'll be fine.

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

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Terrified..
« Reply #32 on: September 10, 2014, 07:52:25 pm »
Hey Tracy yang sometimes it's been a little more than two weeks for mine.if you don't learn patience with this whole thing you never will lol Willie g

Offline Deck

  • Member
  • Posts: 16
Re: Terrified..
« Reply #33 on: September 20, 2014, 11:17:15 am »
Hi Tracy,

     We are in similar situations as I just found out I am positive for hep c recently.  That being said I think its normal to feel terrified although we all have different reasons for that.  For me it seems that I had to drop everything, literally.   I was living in Denver, am a 35 yr. old male, and moved back to PA to get help from family.  Currently I am paying rent 2000 miles away and have no idea what happens next.   The only thing I know is that I want the treatment asap. 

     My point is that being scared of this before having any major complications seems to be way better than fearing it after many years and becoming ill.  You found out about the disease by doing a virtuous act of giving blood.  If you hadn't tried to help others I'd imagine your future would be in a higher jeopardy than it is now.  I'd vouch for the anti-anxiety meds for awhile too.  Lorazepam has helped me and certainly takes away the "ill" feeling in my stomach as I await for what is next.

Good luck, stay positive!

Ryan

Offline willie g

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  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Terrified..
« Reply #34 on: September 20, 2014, 03:33:15 pm »
Hey deck, welcome to vampire alley, good to hear your upbeat and you'll soon have this licked in no time! This whole thing ,, you do learn patience. Christ be with you. "Just"willie g

Offline johnsshutts

  • Member
  • Posts: 97
Re: Terrified..
« Reply #35 on: October 11, 2014, 12:07:45 pm »
It was hard at first, but you learn to live with it. A lot better cures out now! You will be cured, and you will be just fine. I am ready to start Harvoni real soon, appt. on the 28Th. I seen my Doctor in Feb., he advised me to wait. I was on peg and copeg over 10 years ago, for 14 months, not cured. It was a very rough 14 months. I was a supervisor with TSA, that didn't help. I didn't take much time off from work. I am a geno 1a with a viral load around 7 million. I have been keeping my hep c under control, I do have my good days and bad days! I have been taking herbs everyday for around 7 years. Max Milk Thistle, and liver care. I truly believe these herbs have helped keep it under control. I am so thrilled that there is a great chance of being cured. I only had a 40% chance last time, and terrible side effects. This will be a piece of cake, 12 weeks, with mild side affects! I will be cured! I will be starting a new fresh life, and I will retire in January!

 


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