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Post Info TOPIC: Diagnosed in July
Phoenix17


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RE: Diagnosed in July
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Hi Sophia - I have told a little of my story on the other thread you started. 

About telling people, I started out my letting my Mom know. She is the only person who knows everything about me. : )  I then told my 17 year old daughter. She was not too fazed by it. She has become my water watcher. When on treatment you need to drink at least a gallon of water a day, so she makes sure that I am doing that.biggrin    I was not going to let my bosses at work know, but I have known them for 16 years, so I told them. It was not a big deal. I don't think I would of said anything if I wasn't close to them. They are all mom's and our daughters grew up together. You have to do what you feel comfortable with.  

I can't wait for you to start treatment! 

 



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Cinnamon Girl


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Hello Sophia, I`m so glad you found us... welcome to the group!

You`re among friends here, we all understand what it feels like when you`re first diagnosed with Hep C, especially as in most cases it`s completely unexpected.  Some of us can quite easily figure out how and roughly when we were first infected but others never do find out, and it can take a while to come to terms with that.

The question of who to trust with the information is a very common concern, and we all deal with it a bit differently depending on our own situations, but you can feel free to speak openly here knowing that no-one will be judgemental or critical in any way! 

The good news is that there`s never been a better time to treat this virus, and it sounds like you`ve already made very good progress with the preliminary testing.  Epclusa is the best possible treatment for you and I wish you all the best of luck with your insurance approval!

Stay in touch with us and do ask any questions you many have, we`re here to help!  smile

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Loopy Lisa


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Hi Sophia,

I think these days there is not much need to tell people if you are being treated straight away.

I am quiet open about my infection, frankly I don't give a hoot if someone disappears because I had an infection, they weren't supposed to be there if they have - it actually hasn't happened, but lots of "how did you get it" type questions, "what is it? and other general questions. People know its curable, and not really bothered by something that has a cure. It has encouraged some friends to test as well, as they too had tattoos and piercings, I also informed ex-partners. I do think its correct to inform your dentist, or anything where blood has been exposed. Saying that, I have been through two treatments and waited a long time between them - years. 

If I had found out and had the available treatments now available, I'd probably have told still ex partners and my dentist, but for the rest, I'd have treated and got on with life. :)

I understand the fear, every single person has it after diagnoses, also confusion and after a while acceptance. Its curable, that is the most important thing, and a few months of pills you can regress in any damage done to the liver, if any.

Trust me, this will soon be a thing of the past and you can enjoy life again. :D

 

 

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Observer


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Hi Sophia,

I think we all understand your disclosure dilemma, it must be very overwhelming for you.

I told my family and friends when I got my letter from blood services telling me my donor had been HCV +........ I guess because it explained so very many weird symptoms and illnesses they had seen me deal with/try to understand for 17 years. On one hand we were all relieved that it was 'something', but on the otherhand, it's not a nice thing to live with.

I did not tell the parents of my students, but I eventually told the admin and fellow teachers so they would understand my need to deal fanatically with any cuts/blood and so they would understand how crappy I felt most of the time. It was a small school and I consider them friends.

I always told dentists, blood takers etc, for their safety.

 

 

Thank goodness your Dr. tested you for it and hopefully before you realize, it will be something you "had" and there is no need for you to share the info with anyone.

 

Glad you found the forum.

Alison

 

 



-- Edited by Observer on Wednesday 28th of September 2016 04:57:10 AM

__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Sydhanrahan


Guru

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Hi Sophia. You must be going through a turmoil of emotions. Most of us here chose not to share the information with everyone. It's overwhelming enough without all that judgemental stuff, particularly from work colleagues. 

Im a G2 as well. They say its the easiest one to treat although these new drugs seem to take on all genome types. A fibroscan of 9 sounds pretty good to me - mine was 47 before I started treatment and has gone down to 27 in nine months. Try not to worry or waste time with the blame game or the what ifs. This is the best time to find out - there a great new drugs to treat it and thanks to a methodical doctor you are probably far from very sick. 

Good luck with it all

Syd



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Tig


Admin

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Hi Sophia,

Welcome from me too! We're so glad you found us, I know you'll enjoy the support and friendships. A really good bunch!

It's not necessary to tell anyone if you choose not to. You have nothing to be ashamed of by the way, sometimes we know how we were infected and other times we don't. It doesn't matter, getting cured does. We all understand the reasons for keeping our private health records private. You're in the drivers seat, take it wherever you want to go. Some understand, like us and others never will. Do what is right for you.  Epclusa treatment is so effective, with minimal (if any) side effects. As a genotype 2, your success rate is very high on this protocol. You should be fine at work, who's gonna know? 

If you have any questions, please ask. Be sure to use the search function, you will be able to find a lot of good information and personal discussions. Look around the Home page and select a section that interests you, there are several. Enter a keyword or two and see what opens!

Click the red link in my signature. It will provide you with info on your signature and a good list of abbreviations. While you wait for approval, relax and let the anxiety wane and allow your blood pressure to lower! We will be here from start to success. It's going to be fine, just wait and see smile

PS: Here's our community page for Epclusa Warriors. Feel free to join in. 

Epcluser's Corner



__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Ruby Red


Senior Member

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Hi Sophia

Welcome to the group!  You have found a safe place to vent and acquire information.

Being diagnosed is overwhelming. All the questions and confusion in the beginning can be mind boggling. The good news for all us is that we are diagnosed and steps are being taking to be cleared or have already been cleared of this wretched virus.  smile  

Looking forward to the day you post treatment approval.

 



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Sophia


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Thanks, I already feel blessed from this forum and I can no longer feel so alone.  



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Canuck


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You are right to be focused on the end goal Sophia. Doing everything you can, and have to do, to get there. It WILL get better some, as you go along this convoluted path, as many here will testify. And you are right about the waiting too, that is also hard! And Lchris is wise - What IS normal? (around here anyway!) hee hee Nothing feels "normal" anymore when you find your world has been turned upside down in a moment! A lot of people are left reeling, we re-group and then do the next step. There are many around me who I would not, could not confide in, for good reasons. It would not have helped me, nor them. Everyone has to do what they feel or know is right for themselves. Concentrate on number one - you! Glad your here and have met a few of us now! biggrin 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)
Sophia


Member

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Thanks, I guess I'm worried if someone finds out at work, I will be the topic of judgemental criticism and a great big topic of the rumormill. My dr told me I don't have to tell anyone and I know my stepfather won't say anything to anyone. Can't wait for the Epclusa approval. Each step is a waiting game but each step is one step closer to the end goal of being free of the disease.



__________________

g2 diagnosis 07-16

fibroscan 8.9, F-2
Lchris1


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What's normal?  I was reluctant to tell anyone what I had because of the implications of my past  behavior, when I came to grips with that, I was reluctant to say much because I  wasn't  sure how bad of condition I was in...didn't  want to be an alarmist-  really I was just scared.. the worst is the unknown,  you'll get great info here. There is a lot of us on the same path with you.



__________________

 Male,57yr,diagnosed  1/27/2016, hep c 1a,, Fibroscan F4,cirrhosis,  fatty liver, ascites,portal hypertension, high BP, stage3 CKD. Vl before treatment 5670000. Start treatment 7/2/16- 24wk Sovaldi and Mydacla 60. Vl 6wks 8/11/16 -UND, VL wk 14-UND. EOT 12/15/16.  VL 12/21/16 UND. EOT+ 12(3/9/17)?.
Sophia


Member

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Thanks for the encouragement. youre right with the fibroscan and yes the big word you used was my 8.9 score. My original alt ( and the other score) seemed normal to my gp but not the gastroenterologist. I'll catch on to the abbreviations and terminology soon I hope!



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Canuck


Guru

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Hi Sophia,

Welcome here.

I am glad you got diagnosed, and I am glad you are seeking Epclusa.

It IS a big shock to go through, but I am very glad to hear your doc sounds like he IS doing the right things (generally testing his pts. for HCV for one), otherwise you would not be on the right path, and, doing the additional testing for A, B and HIV is the right thing to do as well. That is how it should be, everyone should have these basic assessments done prior to treatment. And very good for you that you pursue a medical check-up every year!

So, how were you levels of immunity to A and B? Is all of your immunization up to date?

Can you clarify your fiber"score" of 8.9? Did you mean you had a fibro"SCAN", and you kilopascal measurement was 8.9?

Have they done an abdominal ultrsound for you? Do you happen to know the results of your liver function tests (LFT's)?, ie. ALT. AST, etc.?

I did not opt to tell anyoneone in my family, some/many people are comfortable doing so, and having people who help and support is good. I am glad you shared with your stepfather. I shared only with my partner, and other medical related people, and importantly ... right here. The unconditional support I garnered from my partner, but as well from everyone here, was key in my ability to cope and deal with it all.

It CAN feel lonely and it IS anxiety provoking, but you are obviously taking the bull by the horn, you have a very good doc, and you are trying to get VERY good drugs, and you may well get epclusa too - more and more people are getting it in the U.S.!

You WILL do well!

You'll see, many other people will be coming along right shortly to meet and greet you and to try and make you feel better about things.

Hang in there. smile 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)
Sophia


Member

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Posts: 13
Date:
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Thanks Chris, im scared a little I guess. very busy at work so I get time at night to think about this. i don't want anyone to know about my condition, is this normal for newbies?



__________________

g2 diagnosis 07-16

fibroscan 8.9, F-2
Lchris1


Member

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Posts: 30
Date:
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Welcome Sophia!

You found a good place here.  I recently found this site, and while I don't post a lot, I often read what's here -there is much support as you will quickly see. Best wishes  and my prayers for you.. you are not alone- Chris 



__________________

 Male,57yr,diagnosed  1/27/2016, hep c 1a,, Fibroscan F4,cirrhosis,  fatty liver, ascites,portal hypertension, high BP, stage3 CKD. Vl before treatment 5670000. Start treatment 7/2/16- 24wk Sovaldi and Mydacla 60. Vl 6wks 8/11/16 -UND, VL wk 14-UND. EOT 12/15/16.  VL 12/21/16 UND. EOT+ 12(3/9/17)?.
Sophia


Member

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Posts: 13
Date:
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Hello,

im a 55 year old female dagnosed with hep c g2 in July. Fiberscore 8.9. I never knew anything much about the disease at all until I was diagnosed. i found out through a yearly dr checkup which my dr recently started testing for it with his patients. It hits you like a brick wall, I had to find out everything I had to be tested for hep a,b and hiv. It was an incredibly frightening experience.  i have accepted it mentally and now I'm waiting for my ins co to approve for me the new drug Epclusa Which is the best for g2. 

I have friends, family and a normal life but I feel so alone because I haven't told anyone except my stepfather. i need someone to talk to.



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g2 diagnosis 07-16

fibroscan 8.9, F-2
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