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Post Info TOPIC: Recently diagnosed
Phoenix17


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RE: Recently diagnosed
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Welcome Fay! A few months ago I was scared too. It's great that you found out now before any real damage is done. I have had this a long time and just finding out now was not fun, But... This is the perfect time to get treated. Take it one step at a time and know that we are here for you!



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JimmyK


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Fay don't be scared. I know that is easy to say, but really, don't be.

 

Take our hand and walk with us. Many here have been where you are and trust me we know.

Anyone who has put the spoon down is simply fantastic in my book. Y'all already have the hard part done.  ;)

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Pablito


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Heh Fay

Welcome to the forum and, like the others have said, you will come to terms with this and beat it.  It sounds like it's going to take a little time to get treatment but you will get it and get cured.  Your young age and the fact that you are not drinking will mean that you most likely have very little liver damage.  So hang on in there through this period of uncertainty.

And congrats on 3 years sobriety.  Don't beat yourself up about how you got HCV...we all do initially.

Like the team have said, the first port of call is to get a viral load blood test to see if indeed you still carry the virus (20% clear naturally) rather than just having the antibodies, then a fibroscan (a type of ultrasound) to see if there is any fibrosis of the liver present and genotyping to see what sub-type of HCV you have.  This will all inform what type of treatment you get.  Success rates are around 95% so you have great hope.

Being a polite pest is the best way to navigate the healthcare system.  Call the garsto's PA once a month and see if you can get a cancelled appointment...that kind of thing.

One final thing: think long and hard about when exactly is the best time to come off the last bit of subutex.  The very last thing you need at the moment is to relapse.  Further, you want your immune system to be at its strongest when you start treatment so either before or after treatment is the time.  I go to meetings too and I know there can be pressure to be off any meds but I'd take advice from the professionals about the timing (as long as your doc isn't one of those dodgy sub docs).

So chin up even if it feels dark now - you'll get through all this and be the stronger for it.

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
Canuck


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Fay,

Being scared and feeling like you are in limbo is not nice place to experience. Waiting, under these conditions, to get in to see the liver doc can feel like a long time.

To get some sort of confirmation, and to know where you stand, go back to your first doc (the one who has taken your blood 3 times now, which I assume was to test for hepc?), or phone them, and ask them to please verify for you if all they know is that you have tested positive for the "anti-body" only, or, if indeed they have found you have a "viral load, a load count and know your genotype". In regard to your hepc testing (HCV RNA PCR) or liver function tests (LFT), you are entitled to ask for and receive copies of any lab work results your first doc has in your chart.

You mentioned (that adding to your worries) is that you have "always had liver problems" ... can you be more specific? Have you had any blood tests in the past that would indicate trouble with your liver?

I am sorry you are having such a tumultuous time right now. Perhaps things will not turn out to be so dire as you are dreading. In your turmoil, in the interim, it might help if you feel you can try to do something, to find out more now, while waiting to see the hep doc in Dec.

See if you can get some clarification/test results from your first doc about your HCV blood tests. You could also ask your first (referring doc) if there IS any other hep doc who can see you sooner (there might not be). You could also phone the the hep doc's office yourself and ask to be placed on their cancellation list (taking up someone else's cancelled appointment) in chance that you might get in sooner. You could also ask your referring doc to call your hep doc and ask on your behalf if your appointment could be bumped up.

Your partner and little one have been tested, that is good that you got that done. At least you know little one is neg. If you have HCV, chances are low that your husband would contract it from you. Concentrate on #1 right now - you. Find out where you are at, then all the pieces will start to fall into place. 

Hang in there. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Fayb


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Thank you so very much everyone for welcoming me. My Drs office has drawn my blood three times and has only informed me that I am positive for hep c I won't find out more until I see a specialist because no one at his office understands it or what the labs mean they only understand that I'm positive. They do not have many patients with hep c I'd also like to add that he is a suboxone dr and the reason I'm sober and almost off of subs he's now worried about weaning me because we found out about this. I haven't used needless in three years so if I got it from that, that would be how long I've had it and I've always had liver problems so I'm scared. I'm scared for my daughter and my husband as well. Hes had fatty liver disease all his life it started as willsonburgs disease?

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Fay Pierce
wendyo


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Hi Fay,

Congrats on your 3 years. If you can get and stay sober you can beat this too. I found out I had HCV when I was 2 years clean/sober and being that I got sober young, my disease progressed very slowly. You too have this going for you. As Jimmy mentioned, further testing is needed. Not sure if you can call around and see if another liver doc can get you in sooner. Worth a try.

Hang in there girl. You are not alone.

wendy



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Tig


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Fay,

Here's some information that Jill posted on a different thread. There's a link in her message to some good data on this disease. I think it'll help you understand this better.

HCV Advocate



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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wmlj1960


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Hello Fay.

 Congrats on your 3 years sober. You'll find that there are many members here, including myself, that are in recovery from alcohol etc. So we all have 2 things in common already. I know you have a lot of questions and the answers are here including the 1st answer = there is a solution. You are young, today's medications are very effective and easy to take, and broken hearts get mended on a regular basis around here. We'll get you fixed up in due time. Keep us updated on what your doctor says and easy on the worrying. Welcome to the forum! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Phoenix17


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Hi Fay - Welcome! 

I know how you are feeling. I was diagnosed about a month and a half ago. It's a scary thing to think about. But... if you do find out you are positive, there are great new treatments out there with close to 100% cure rate. 

Being on this forum has helped me a lot. Very supportive people that will help you get through this. 

I have had this for about 36 years. Didn't know I had anything close to hep c. I do have some of the same symptoms that you do. Especially the brain fog part!

Keep checking in, there is a lot to learn here!



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Tig


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Hi Fay,

Welcome to our family here! I'm happy you found us and smiled when I saw your comment about "if someone sees this". Trust me, we rarely miss anything and will always respond with friendship and information.

I went ahead and moved this thread to the New Members section as Shadowfax mentioned. I'll post some additional information soon. I wanted to say hello and let you know that we'll be here to help you any way we can. Be sure to search our Homepage for categories and utilize our search function at the top center of each page. 

With your young age there shouldn't be any issues with advanced disease. Hep C is a slow moving disease and takes years to start seriously damaging the liver. It's not uncommon to have to wait to see a specialist, you can ask them to call if they have a cancellation and get in sooner. How long has your husband been dealing with the fatty liver disease? I'm glad he's being tested soon.

If you have any additional information you'd like to share or have any additional questions, please ask. You have found a lot of caring and knowledgeable people here and I'm glad you did. Keep your chin up, you're going to be fine. Give that little one a great big hug for us! Take care...



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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JimmyK


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Hi Fay, welcome to The Family here.

Let me start with a BIG congratulations on 3 years of sobriety. This tells me you already know how to fight and win. To be honest that battle was harder than this one will be. The treatment plans today are a breeze and extremely effective.

Shoot, I had Hep C more years that you have been breathing! LOL I am saying that to assure you, at your age you have caught this thing very VERY early and that will work to your benefit.

Now here is where things need to be fine tuned.

Being Hep C positive is not the same thing as having Hep C. It means that you have been exposed and have the anti body.

You need an HCV RNA test to determine if you have an active virus or not.

That is the next step.

At any rate no worries, and don't beat yourself up over anything you have done. That is history and y'all can't change history. But the future is yours and it will be a good one. I can tell already. ;)

If you have yet to see a specialist, I am assuming you have yet to do the HCV RNA testing. If you have done it the results are important to try and post. That would be a count generally in the high 100 thousands or millions. Then the Genotype.

If you don't have those yet, nor taken the HCV RNA test then please remember that some folks, about 25% or so get infected yet do not develop Hep C.

Hang in there and again, a warm welcome!

JimmyK



-- Edited by JimmyK on Monday 12th of September 2016 06:40:28 PM

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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Shadowfax


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Welcome to the forum Fay,

We are glad you found us. Many people will see this and be very active answering your questions as they come up.

It might be nice to introduce yourself in the New Members Area if you wish and tell us a little more about what other tests they have done and your results.

If you wish to do that, you can find it here http://hepcfriends.activeboard.com/f389516/new-members-area/ but no pressure of course to do that.

This is a tough time indeed but we can assure you that if you are going to find out about this, it's a great time to do so since you are young, the new medications out there are great and you will be cured. Please think about that as well. You should have very little damage as well because you have caught it soon.

There are many things you can and should do and everyone will chime in and guide you. ** Canuck just posted here as I am typing this.

We are all here for you and for each other.  Keep the faith.

SF

 



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Canuck


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Dear Fay,

I hear you, feeling crushed and heart-broken, not knowing what to do or where to go. It is a very hard place to experience. But you have certainly done a very good thing in finding this place and coming here! You are soon to meet many people who will support and help you here. Hang in there and welcome from me, others will soon be right along to help in any way we can. Some relief will soon be along the way! Right off the top I can only say, seek the solace and advice, if you can, of any kind general practitioner, one who might be able to help answer at least some of your initial questions during this initial waiting period/interim. We will try to assist in what ever ways we can as well. For what it's worth, it is possible that you contracted HCV prior to the few months you speak of, of being separated from your husband. Good you got little one tested, and good your husband is getting tested. You are doing all the right things. (Don't be too surprised at the flood of responses you are about to receive!) C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Fayb


Newbie

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Posts: 2
Date:
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I was told on Sept 2nd the day before my 24th birthday that I am hep c positive. I am three years sober and have no idea how I got the disease. I got my two year old tested and she is negative my husband who already has fatty liver disease is waiting to be tested. My husband and I separated for a few months and I saw someone during that time I slept with him while I was on my period and unsure if I could of gotten it from him? I can't see a specialist until Dec 19th so I'm stuck with so many questions until then. My heart is broken and I'm so confused. I don't know if I should start eating healthier or what I should do? For the past month I've had a lot of stomach pain numbness in my fingers leg cramps blurred vision and my thought process is slow I'm easily confused. I don't know what's going on with me if anyone sees this please give me your thoughts advice and knowledge

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Fay Pierce
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