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Jane-n-phil


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Hi new members here :)
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Thankyou it has come as completely unexpected shock we only found out as he was diagnosed as type 2 diabetic, as am I too and on the back of the blood tests he had the liver ones came back seriously abnormal I don't even know what figures were or what they called but I know one figure was over 400 I wish I'd asked for a copy so I could have looked into them but tbh think we were just so stunned! And I think googling it has made it worse he doesn't fall under any of the usual risk factors the only needles he's ever had are 2 tattoos done within the past 10 years so the doc thinks that's unlikely and never had a transfusion, I on the other hand have had a transfusion but that was bk in 2002 way after donor blood was supposed to be safe so we're Completely stumped at the moment as to how long and how just wish it wasn't such a long process to get tested etc, so relieved to hear it's not necessarily as bad as all the things I've read I think the thing that's eating me up more is if the kids have got it somehow

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robertsamx


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Hi Jane, First let me say welcome home. This Hep C Discussion forum has been a god send to me and my wife. I found out in 1989 that I had HCV and the treatments at that time were miserable with poor cure rates. So I decited not to treat and wait for better treatments. Along the way the Doctors would try to get me to treatment, but I didn't want to have the treatment flu for 48 weeks to a year.I was told I had a fatty liver at the time, but really it was cirrhosis showing up at the party in my liver!!  At the time when they first told me I had HCV it was quite a shock, and sent me into a mental and physical decline, so I know what you and your husband are going through. It's a BIG SHOCK, but now days it doesn't half to be such a big shock. They have treatment down to one pill a day , depending on his circumstance he will need anyware from just 8 weeks to 12 weeks or 24 weeks, the side effects of today's meds are very very minimal .  I see your in the UK, so the uk may be a little behind in treatment options, so getting the easy treatment drugs may be your biggest obstacle. My wife and I have been married 30 years, I am a type3-a, she WAS a type 1-b.  After 30 years we never infected each other with our own geno type, so that shouldn't be a problem for you or your family members. Please try not to worry about cross infecting, it's very rare!! Rather than worry and have sleepless nights, get tested, test the family, put the worry to bed!!  As others have said, we need to know his geno type,if he has had a fibroscan those results will help us help and answer your questions. Also what are his liver function test results. Do you have any idea how long he may have had HCV? I know this is a lot of questions but the answers are in the questions.  Stay in touch- we will all help you and Phil get through this.  RC



__________________

 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Jane-n-phil


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Thankyou so much is definitely the not knowing that's eating me up right now and wish things would go quicker the waiting game is a nightmare and the not being able to talk to the people you would usually talk to when things are rough though we're a pretty strong duo Phil and I :) we're from conwy, north wales, Britain opposite here it's supposed to be sunny but nope muggy grey and raining the usual I suppose lol  



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Cheddy


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Jane,

Listen to Tig. He has a history of being right.

 

 



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Tig


Admin

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Hi Jane,

Sorry you're unable to sleep, that's often a complaint we have on or off treatment. I'm sure the new news isn't helping. I wish I could emphasize the good and lessen your concentration on the unknown. Trust me, this is a relatively easy thing to manage and it's the initial stages that are the most disconcerting. Once you get the testing completed and know where you stand, the pressure will let up as the plan moves forward. Don't overload your mind with things you read on Google! Most of the information is from the old days, when treatment was ugly and drawn out. Those drugs were awful, I went through it twice. These new forms of treatment are night and day better. Easier to tolerate and the rates of success are closing in on 100%. No need to worry. The people that need to worry are the individuals that don't know or choose to ignore it. This can be beaten and you've both taken the right steps to do that. Find relief that you know and rest easy knowing you will beat it. There is nothing to be afraid of, promise!

Here's a link to a thread we started here some time ago. We thought it would be nice to let people know what your genotype is (if you know it) and where you are located on the planet. You can see from the number of pages, that we've been adding to it for quite awhile. Add your name and Phil's. It's time to get it started again! I reside in the state of Florida in the USA, grew up in Washington state and moved here in 89. This is the time of year to stay away from Florida.... It's unbelievably HOT and HUMID. Thank God for air conditioning!

Click Here >       Where you from?



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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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Jane-n-phil


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Well once again sleep is evading me and I'm re reading through your posts and kind of absorbing your positive vibes for that I thank you all, once again have been kind of emotional and is Phil being the strong one! Lol where abouts are you all from? We're from a sleepy Welsh village in the UK :)

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Jane-n-phil


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Thank you all so much your words have eased my mind a lot and things are sinking in slowly I shall get Phil on board aswel as I'm sure all your fab advice will help him a lot
Many thanks one and all

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Scruffy


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Hi Jane

Don't freak out. We have all gone through this here. Treatments are really effective and easy now, they have come a long way. Don't get stressed out.

Best wishes.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Cheddy


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Jane,

I wanted to tell you that my husband does not have hep c.  We have been together for 23 years.  I was not diagnosed until last December but have probably had HCV for at least 30 years.   He was tested and shows no antibodies.  Don't assume that Phil's diagnosis bodes the same for your whole family.  HCV is blood born and it's is shared through specific means.  I hope that helps to move one more worry to the back burner.

Sleep tight.

 

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Tig


Admin

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Hi Jane,

Welcome to the forum and our Hep C family! You have found a great bunch and we'll be here for you both. Do your best to NOT freak out, this process isn't what it once was. Just a few years ago, the rates of treatment success were far lower than they are now. The treatments were harsher, longer and not much fun to go through. The new all oral medications are so much better, faster to the punch and the side effects are almost nil. There are different options available to you now, so take a deep breath and relax. We'll get you informed and help you figure out which way is up, don't worry, okay? 

We need to know a little more information before we can tell you too much more. If you have any information on Phil's blood work, share it with us. We need to know the genotype, and what the liver blood work indicated. They will also need to provide you with the fibrosis stage of your liver. There are a number of ways that can be determined. Tell us what you have done and we'll be able to decipher them with you. 

It may seem a bit overwhelming right now, but it doesn't need to be. We'll figure this out together, fear not! The new treatments are fairly easy and straight forward. There are no injections now, just oral medication once or twice daily. It depends on the genotype and medication used. Don't concern yourself with that right now. Share your own info when you get it.

I'm going to give you a link to some more information. Be sure you review our HCV News page and use the search function at the top center. Enter a keyword or two and you'll get some results on forum discussions. We've got more information that I've got gray hair and that's a lot... A lot, lot, lol!! We have fun here, and I want you to relax, get to know us and get Phil in here. I want to say hi! This will be okay, I guarantee it!

HCV Guide



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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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Cheddy


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Welcome Jane-n-phil.  

Dave's right.  You will find help and support here.  I've never used a forum before this and I am a bit internet cautious, but I've gotten so much more information here than I have from my clinic.  It's hard to find the time, attention, and empathy in a clinical environment.  Here you find knowledgeable people who have been through every step and someone who has faced this journey from every angle.  There is always someone with the latest information, too.  Funny to call us a family since we have never met, but believe me, nobody else is going to get what you are going through.  In fact, you wouldn't want them to.  You will have privacy and anonymity here.

The next step, after diagnosis is to determine which genotype of HCV you may have.  This determines which treatment is best for Phil and for you if you need it.  Did you get that???? Treatment!!! Unbelievable huh?  We can kill this virus now!!  It may not be fun, but wow, this best time so far in medical history to get diagnosed.

Sorry about the sleep.  It is shocking.  Worry won't help so try not to go over the same thoughts again and again if there isn't any new information.  Your imagination may help you prepare, but it can take you down a wrong track and lead to a lot of extra stress. Avoid stress.   Meet this challenge with information and action.  You will be fine. Your children will be fine.  I know my advice is easier said than done, but give it a try.  None of us have been able to process everything at once.

Please let us know what you find out.  We are glad you're here and happy to help.

Take care of each other.

 

Cheddy



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Jane-n-phil


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Thanks so much for the reply I shall check out that link I can't sleep for worrying right now and didn't think through the shock at the time etc wether this will affect our children, jobs etc just having a hard time processing everything right now from the tests he's had done so far his liver results have been seriously abnormal we are now waiting for an appointment at a clinic so hoping that comes through sooner rather than later

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Linuxter


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Hi Jane (and Phil),

Welcome to the forum, we're very glad you're here! Lots of friendly folks here and excellent resources for lots of up-to-date information.

You are among friends here, we're actually just one big family ... so make yourself at home and feel free to ask all the questions that you like.

We've each experienced that "Big Shock", so we know exactly what you mean ... it's overwhelming at first, but rest assured, this is actually a great time to get treatment, the drugs they have now are extremely successful in curing Hep C and most have very few side effects now so it's all good news.

Not to worry, you've come to the right place.

Here's a link (below) to some general information regarding the First Steps with Hepatitis C for the Newly Diagnosed. (Note, the article may be slightly out of date regarding some of the meds but other than that you may find it useful to get started. We can help fill you in on any medications etc as you learn of your husband's Genotype and condition of his liver etc. The article helps understand a bit about Hep C and how to go about getting treatment etc.

http://hcvadvocate.org/hepatitis/First%20Steps/First_Steps_with_Hepatitis_C_for_the_Newly_Diagnosed.pdf

Others will be along to welcome you both, We have lots of other information, this may help get started though.

 Just a note: We don't give medical advice, we leave that to your doctors but we do help you find the information that you need to be well informed as you meet with your doctors and discuss treatment. We're also a great support mechanism to help you from start until you are cured so you're in good hands here. smile

Once again, WELCOME!

Dave



-- Edited by Linuxter on Tuesday 5th of July 2016 08:32:05 PM



-- Edited by Linuxter on Tuesday 5th of July 2016 08:35:33 PM

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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Jane-n-phil


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Hi thanks for the advice on how to post here,  my husband was diagnosed with hepatitis c just today and has come as a big shock to us both,  I am awaiting testing on the 18th of July and just wanted to reach out basically so any advice or tips will be gratefully received many thanks 



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