I am sorry to hear that, it does happen sometimes, and it is just one of those things. I had a chat once with my husband and asked him would he have been mad if he had caught it from me? His answer was simple;

"Its not your fault, and we can't live in a bubble. Every year we are infected by someones flu, or cold, I don't see it as any different. I wouldn't have blamed you. You'll be soon cured and we can move on!" 

I carried his thoughts with me ever since, it reminds me that having the disease isn't an issue if you don't let it be. Every person on this site is lucky to know they have it, and can cure it. I hope that going through this journey together it will bring you closer. Even though my husband is not infected, I know I have my comrade right beside me every step of the way without question. Sometimes bad things make people closer.

Cyber hugs x

Hi Jane,

So sorry to hear your update. But I will echo everyone's sentiments and add that when you all start treatment you have such great help and support here in Jimmy's and RC's experience, strength and hope as they have been where you are and gone through what you and Phil will being a couple doing it together. That's what we do here. You are not alone. Let's see what type you are and go from there. 

Hope dinner with the kids went well. 

hugs,

wendy

Hi Jane, I'm sorry the news came back positive. As others have said it is very very unlikely your children  will test positive.  My wife and I have both had HCV for 30 + years, she WAS a 1-b, and I am still a 3-a.  Neither one of us has given the other our geno type, we have been married 29 years. If I had not gone for treatment , my wife most probaly would not be cured now. In this day and age you both have a 90 to 100 % chance of clearing the virus. The new DAA's of today have such good results. Be thankful that you know now and that a cure is in your future. The fact that your liver is healthy will make treatment a breeze. Both you and your husband will be alright. I will be thinking of you both often, us couples need to stick together .   RC

Oh Jane.  I am a bit surprised and sorry about the unwanted news.  Jimmy makes a good point.  Being there for each other is key. Stress challenges your temperament.  Try not to let it be an excuse if you feel cranky toward each other sometimes.  Just forgive yourselves and each other and take all of this in stride.  IT WILL BE OVER!  

It' a positive that your liver numbers are good.  That should help in your recovery. 

I'm looking forward to more information as you get it.

Again, my sympathies and my confidence, too.

Hello Jane,

As one who shares this thing with my wife, I can say I have mixed emotions about it all. Clearly I would prefer it was simply me alone, but the term "alone" does not mix well with our relationship, one to the other.

At the same time, the though of beating this thing together is simply a thing we have always done.

Married 38 years, what have we apart from the other?

Fortunately this is a good time, if such a thing exists, for us to be co-infected. We shall add one more thing we have been through together, and only strength of bond can be the result.

In other words, look for the good as it is right before you both.

Regards

JimmyK

Thankyou all once again well have been and yes I have tested positive too :( though my liver function is practically normal only a tiny bit raised so more blood tests on the 2nd of August have the kids booked in too,  well I've had my tears and am now taking the kids out for dinner and am taking your advice just taking one step at a time all your words are soo helpful thankyou all

Much love 

Jane,

It sure is hard to keep from worrying, isn't it?  It is true, though, that the odds are really low and that worry doesn't help  Stress really doesn't help, of course, since it causes so many imagined scenarios that never really come to be.  I know this easier said than done (!) but one of the things you get better at with all of this, is putting your feelings in a new perspective. Keep your eyes on the prize.  There's a cure on the other side of this bridge and generally pretty clear cut steps to cross it.  You are going to be fine, Jane, it's just scary right now.  I think I'm giving advice I wasn't good at taking earlier, but I still have to tell you.  

Really, you are doing better already.

Get some rest.  Love each other.  And keep us posted.  We're your new best friends!

The chance that anyone else has contracted it is very slim. I think telling them Dad has a liver illness and the doctors require everyone in the family to be given a check up. Just tell them it's routine. I imagine that they will be initially tested for the antibodies. They can do that with a finger stick test. You should know before you leave the clinic. Again, it's very rare unless there has been direct blood contact. If your test is negative, their chance is almost non existent. In the rare chance you have it, the odds of vertical transmission from Mother to fetus is still rare. One test at a time, one positive day at a time. 

Don't worry about it, the odds are very low and worry doesn't help at all. Don't let that little guy on one shoulder yell negatives at you, brush him off and listen to the positive one on the right. This will be okay, Jane. Hold your head high and we'll help you get through this! Take a deep breath and take care of business, you can do it!

Thankyou so much I pass on all your messages to phil he really appreciates them just since yesterday he can't shake the feeling of not being anywhere closer to answers than before the appointment I'm trying to keep him positive but is difficult sometimes,  my appointment is in 8 hours and not sure how I'm feeling a real mixed bag of emotions I think, and the consultant yesterday said regardless we'd have to have kids tested and just tell them dad's got a virus just need to see if you have it too,  but then how do you answer the questions from there?? They're 14,11,9 and 8 not easily fobbed off 

Hi Jane,

Thanks for the update. Now that the blood work has been done, you'll get some solid information that will lead to the path forward. Tell Phil not to worry about the HIV test, it's routine and is simply good to know. Just like HCV, the testing is needed for wide ranges of people and will be helpful in dealing with or ruling out the disease. 

I believe I was infected through unsterile tattoos, and have many more than two! Darn things we do... The Tunisian intravenous treatment would be my guess in Phil's case. The precautions there aren't what they are in the UK. The genotype may be telling when you find out. You may never know and it truly doesn't matter, getting cured does. Get him feeling better and get the treatment started. He has a few things to accomplish beforehand and he'll be on his way!

Tell Phil hello and to stay positive. You are both way ahead of where you were a month ago. The progress has already begun. This is something you approach one day at a time. Before you know it this will be a done deal!

Well appointment went as well as it can do I suppose from his results his liver has severe damage he's awaiting an ultrasound now then a fibroscan and see what that shows up, he also had lots more bloods done to test for other conditions including hiv which has thrown him a bit so hes been a bit down understandably so. Depending on results of tests which genotype he has etc will take it from there they want to get him in better place before starting treatment as Phil is type 2 diabetic aswel and overweight so they're wanting to get him a bit healthier before treatment so shall see how nxt few weeks go. They have narrowed it down to possibly the tattoos he's had ( only 2) amd he was treated intravenously in Tunisia on our honeymoon over 10 years ago and that's a strong possibility too though we will probably never find out for sure.

Well thankyou all once again for your continued support and advice 

Jane x

Hello Jane,

Just depends on the doctor as to whether you need an actual appointment to get lab results. Having to see the doc to get them should be no indication of results. When you see the doctor re: these results you can ask them to please make lab results accessible via phone or online (most medical clinics now have online access which you should be able to get set up with).

As noted previously though, the chances of you having the virus are extremely small so not to worry.

I think some docs just have patients do everything via appointments because that's how they get paid (IMO a very good doctor will call you or have their nurse call you with the most important lab results and make the rest accessible online).

Be Well,

Dave

Thankyou well I rang this morning results are back but have to see the doctor for results which I'm hoping you have to do regardless of the results so shall know Thursday morning.

And hopefully will have some more info on Phil tomorrow, I shall let you all know what we find out and hopefully help us get our heads round it better than medical talk probably will think il spend whole appointment writing things down lol  

Hi Jane,

Once drawn, it usually doesn't take too long to get the results. It often depends on the distance to the facility doing the testing. You should have results within a few days to a week in most cases. We'll be anxiously awaiting the news.

I'm glad that you'll be joining Phil at the appointment on Tuesday. It's always better to have 4 ears listening to the doctor and 2 voices asking questions. If you need any questions answered ahead of Phil's appointment, just ask and we'll do our best to get them addressed. 

Tell Phil hello and good luck to you both!

Well I wasn't told when I had my bloods done when I'd get results or how etc so I'm just going to ring in the morning and see if they know anything, am hoping won't take them too long.

I've swapped my shifts so I can go with Phil on Tuesday to his appointment and hopefully we shall get more answers,  all you're amazing posts and comments have really kept me a little bit saner than I might have been so thankyou all I shall keep you all updated when we know more.

Many thanks Jane ( and Phil)  :) 

Ruby Red wrote:

---

 Believe me, quickly the "shock" will turn into a positive plan for the cure   Step by step, each one a positive one!

R

---

 Well said Ruby, and exactly what happens ... soon it's on the road to SVR and once again, before ya know it your there, SVR, HepC-Free and a Certified Genuine Dragonslayer! It's all good!!

Linux

Hi Jane, I "had" (crossing fingers) HCV for almost 30 years.  I have 5 children and was married for 35years - everyone was negative but me.  Happy for them, but scratching my head about me as I have no clue how I got it.  Found out when I tried to donate blood in mid-90's.  If someone has to have HCV, this is the best time - nothing but cures out there! Anna

Jane-n-phil wrote:

---

Well is just a waiting game still Phil has his first appointment on Tuesday with the clinic and I had my blood tests yesterday so is all kind of out of our hands at the moment or so it feels, i feel like I've been through the few days of constant tears and worries and am feeling kind of resigned right now not too sure if thats a good thing 

Thankyou ruby red this is my hugest fear is the kids we have 4 they're all quite young our eldest is 14 and our baby is 8 and would break our heart if they were affected in any way so is reassuring to hear that there is hope ahuge thankyou to you all shall carry on updating when we know more.

Much love 

---

 Hi Jane (and you too Phil)

I recall having the same concerns when I was diagnosed. I have had the virus for probably 45 years. I have been married for 43 years and have two adult children. I am the only one in the family with HCV. I was way more concerned than my Doctor. My wife was tested a few weeks after my diagnosis. My kids got tested later. He ordered the lab work as an "aside" when they were seeing him for other issues. 

I went to see my family Doc last November to get the ball rolling so that I could be re-treated  with Harvoni this time. In Canada, it took 6 months before I got to pop that first pill. 

It may also take 6 months where you live to get the treatment started. Try to lose that sense of urgency which I know is easier said than done. Everything is going to be alright. 

Glad to see you and Phil are jumping on this pronto and taking action. Waiting really messes with the mind for sure. Tuesday is right around the corner and you had your labs done so both of you are doing the next right thing. Have a good weekend with the kids and you both will know something faster than you know it. 

I carried twins and did nt pass it to them. They are 19 as of last week and are ok. So hopefully one fear down. 

hugz,

wendy

Yes Jane, that is a good sign.  Parts of this process insist that you resign as you wait for the right information - different stuff than the things our minds like to conjure up as we are forced to wait.  Fact is, unless somebody is deeply ill, your life can go on as it is.  It's the shock that's battering you now.  Know that you will have other waiting games to resign to as you get through the treatment approval and finally, get through to the cure.  I'm so sorry that you have to go through this.  It's real challenge, but this is the right time to find out.  Today's treatments are vastly more tolerable than what many of the people on this forum have been through.  I was diagnosed and treated within 6 months.  That must sound wonderful to them. Still, I panicked and I whimpered.  I resigned, tolerated the best I could, and I grew.  I'm getting better every day.  So go ahead, resign.  Take a break.  This is the stuff that happens to people.  We live through it.  

One day the treatments will be even better and you will get to help somebody get through their shock and their fears as you draw from the strength of your history.  Promise.

My best to you and your family.  Keep in touch.

Well is just a waiting game still Phil has his first appointment on Tuesday with the clinic and I had my blood tests yesterday so is all kind of out of our hands at the moment or so it feels, i feel like I've been through the few days of constant tears and worries and am feeling kind of resigned right now not too sure if thats a good thing 

Thankyou ruby red this is my hugest fear is the kids we have 4 they're all quite young our eldest is 14 and our baby is 8 and would break our heart if they were affected in any way so is reassuring to hear that there is hope a huge thankyou to you all shall carry on updating when we know more.

Much love 

Hi 

Welcome, I am fairly new to this site also. 

Yes hearing the words "you have hep c" is shocking to say the least, been there and heard those dreaded words.  The good news is like others have said meds to treat this virus have changed leaps and bounds just in the past few years!  

Your hubby will get through this, so will you and your children will also.  I was diagnosed in 2007, figuring I'd had the virus for a few decades, plus, I asked both my adult children to be tested considering we shared everything during pregnancy, both "negative"!    

You will be receiving all kinds of information and if you're anything like me, at first it will be like you are hearing a different language,  Believe me, quickly the "shock" will turn into a positive plan for the cure   Step by step, each one a positive one!

R

It sounds similar to my experience. I thought that the side effects were from interferon.  So I wouldn't have treatment with interferon. So then the newer drugs were being approved.  I did the Sovaldi and Ribavirin. So I think it was  Ribavirin that caused these side effects  

But anyway I'll keep moving forward. 

Phyllis

Phyllis wrote:

---

Lisa,

thank you for your post. The trick will be to catch myself in the negative to change to positive thoughts. I am going to try it. I have been meditating and i believe that helps. Another thing I need to do is exercise.  It so hot here now and I like to walk but it's hard to get out there in heat.

thanks for your response,

Phyllis

 

---

 You're welcome Phyllis, it does take a bit of time, but each day it becomes easier and easier. I wish you a happy, stress free, and love filled recovery. x

Lisa,

thank you for your post. The trick will be to catch myself in the negative to change to positive thoughts. I am going to try it. I have been meditating and i believe that helps. Another thing I need to do is exercise.  It so hot here now and I like to walk but it's hard to get out there in heat.

thanks for your response,

Phyllis

wendyo wrote:

---

Loved reading your post Lisa. Made me remember the book As A Man Thinketh by James Allen. Powerful stuff. Our self talk can really debilitate us. I know from doing it to myself with this new job! 

I have found it helpful to breathe in and say in with faith and exhale and say out with fear. This helps in all areas of my life. 

Prayer and meditation are rewarding and I am glad to have an open mind and try to employ different things to assist me be it work, illness, family issues, money, etc. 

Thank you for bringing this up and I hope you are feeling better and better. 

I try to tell myself and others, have a nice day unless you have other plans

 

---

 You're welcome, I am so glad you have found a way to train yourself towards a better future. Everyday, I told myself this is one day towards being freed. I don't suffer from Depression anymore because I saw that it derived in part from feeling inadequate, self loathing at points and fear of situations. Nobody teaches us to be that way, it is ourselves letting our imaginations go wry. It really isn't our problem what other people think, its only important what we do about ourselves. We have to love ourselves because we have worth, we have value, and we all have something to offer. Sending you a big faith hug! x

Loved reading your post Lisa. Made me remember the book As A Man Thinketh by James Allen. Powerful stuff. Our self talk can really debilitate us. I know from doing it to myself with this new job! 

I have found it helpful to breathe in and say in with faith and exhale and say out with fear. This helps in all areas of my life. 

Prayer and meditation are rewarding and I am glad to have an open mind and try to employ different things to assist me be it work, illness, family issues, money, etc. 

Thank you for bringing this up and I hope you are feeling better and better. 

I try to tell myself and others, have a nice day unless you have other plans

I thought I might add something here, and I hope its not offensive. Depression is in part linked to negative thinking. If you look at something and blame it, you will continue to look through the same negative glasses and the cycle continues. It is human nature to find a link to cause and effect to make sense of things. However, we can change thought patterns by focusing on happier things that give us pleasure. I had 7 years of depression and panic attacks until one day I woke up and said enough. Everyday I retrained my thoughts to see things that gave me reasons to be happy. Every time a negative thought popped into my mind I brushed it away as fast as it appeared. I never used any drug treatments, or therapy, I used techniques that are based on psychology. I did have recently a panic attack out of the blue due to negative thoughts, and brushed it off very quickly and that was the end of it. Medicines only play a part in depression as we can create new pathways in the brain that bypass old routes by changing our behaviours. I do understand how crippling depression can be, and that awful feeling. But we can do things to help ourselves so we can move forward and make the most of the precious time we have in this life.

Drugs only treat symptoms, but you can look in yourself to see what is your triggers and deal with them. x 

Hi Phyllis,

I rather like Linus, it goes well with my 30+ other monikers around here, LOL

Take your time and get settled in first, I just wanted to give you those links to make it easier.

Dave

Excuse me, Linux!

i will set up info on the signature line. 

Phyllis

Hey Phillis,

Sorry you have had such a long and unpleasant experience. I was on the Interferon, Victrelis and Ribavirn triple 3 years ago. A total course of 28 weeks. I felt a lot of the same things you have mentioned throughout treatment. I had a difficult time with depression from the interferon and Riba. I continue to use an AD, because it won't let up. I still have good and bad days, years later. One other thing, it took every bit of a year for me to recover from the Ribavirin side effects. I hope you get some relief soon, we can only hope and keep searching for answers.

Thanks, Linus

Pablo, Yes it did work.  So that's a plus!  i have had hepatitis since 1973. But was only sick for a couple of weeks. Then it wasn't until 1998 that I had hcv diagnosis.  Yes I have had depression and anxiety issues. I had been taking citolpram for about 10 years but after about a month or two on treatment they no longer worked and went to Paxil. Which I'm still taking along with other antidepressant/anxiety. I also tried TMS and I did well for 5 weeks then crashed. 

i know I must sound so negative. But I'm also afraid that this is some kind of permanent damage. I sure hope not. 

Hi there. Thanks for responding.  I was on Sovaldi and Ribavirin for 24 weeks. Ended treatment in May 2015. The anxiety and depression kicked in after about 2 months. I was already on an antidepressant but it stopped working. i have been seeing a psychiatrist who is great. We keep trying New treatments and they seem to last a couPle of weeks. 

Anyway I blame it all on the Ribavirin. E

Hi Phyllis

Welcome.  Ribavirin is no fun so well done for getting through the treatment.  Did it work?  

May I ask: did you suffer from anxiety and depression before the treatment?  I suffer from both too and when I had interferon and ribavirin a few years back it exacerbated both.  The symptoms improved a few months off the treatment.  But they came back later.  I didn't associate this with the treatment though; moreover, I just felt it was the natural course of depression/anxiety.

I'm loathe to be definitive without knowing more about your story, but I doubt that drugs taken over a year ago are playing a role with your current situation.  The way our minds work we like to be able to attribute symptoms to things concrete.  The truth most likely lies with something (or things) going on in your emotional world, or perhaps just the natural waxing and waning of anxiety/depression.

Pablo

Hi Phyllis,

Welcome to the forum, we're very glad you're here!

I hope you don't mind but I took the liberty of quoting from your biography so we know a little about you.

"My genotype was 3. I was treated with Sovaldi and ribavirin For 24 weeks which ended May 2015. I had depression and anxiety during treatment. No aches and pains. I hate to say it but I am still having depression and anxiety.

When you get some time, perhaps you could add some info to your signature line. The following is a link on how to do that in case you need it: Signature Line Set Up/Abbreviations

Also, you may want to start a new thread in the New Member's Area and here's a link to doing that (again, in case you happen to need it): Starting a New Thread

Linux

Hi Phyllis,

I can relate to ongoing issues post treatment, but mine are related to the old standard of care, Interferon protocols. It would help if you could tell us a bit about your treatment, genotype and as Jimmy mentioned, have you received any input from your physician on these issues.

I'm glad you found us and we'll do our best to help you understand and try to answer some of your questions. 

Hi Phyllis and welcome!

Have you seen a Doctor to determine cause? Has anyone associated this to treatment or is that presently an assumption?

Thanks and you are in the right place here!

JimmyK

I joined yesterday. It is so helpful to connect with others who are having The same experiences  I am clear of virus now for 1 year but Inhave a lot of anxiety and depression  

has anyone had this lingering problems?  

Thanks,

Phyllis

Thankyooou all so much your advice and support has been invaluable! The horror stories when you Google it are awful but all of you have been so reassuring and supportive in pointing us in the right direction thankyou to you all :)

Excellent resource for Jane and Phil, Jill. The Hep C Trust is an outstanding organization and has provided endless support and information to people everywhere, but it's a very valuable source for those in the UK. 

We have a page here with a number of organizations, including the manufacturers. If you'll be using the NHS, many of these payment assistance programs won't apply, but there may be some manufacturer assistance and advice that you may find interesting and helpful. We've got tons of information here and if you can't find something, use our search function at the top of each page, enter a key word or two and you'll find our discussions on the subject. You can always ask here on the forum for information if you need help finding it. We're here to help and make this as simple a process as possible. Knowledge is power!! 

Payment Assistance and Info

Hi again Jane, I hope you slept well.  

Lisa is quite right, after the initial shock, the state of panic soon eases off once you start getting all your information together.  And as others have already said, this disease is very treatable, especially nowadays. 

I think most of us at first go through a process of trying to work out how and when we became infected, and although for some of us it was quite obvious, many people just don`t know and will never know.   The main thing is that you`re moving forward with this, so try to focus on a positive outcome.  You`ll read about so many success stories on this forum, let that be your inspiration!

I`d like to give you this link to the Hep C Trust website, I think it could be very useful to you and Phil.  The Hep C Trust is a UK based charity and this page shows the treatments currently available through the NHS for people in England, Wales and Northern Ireland, listed by genotype...

http://hepctrust.org.uk/hepatitis-c-treatment-available-nhs-england-wales-and-northern-ireland

Wishing you both all the best, and if Phil would like to join us here any time as well he`d be very welcome indeed!  

Hi Jane and Phil,

We all went through the same thing and totally understand. Like you, the first thing I did was google and nearly gave myself a heart-attack reading horror stories - why do we do that?

My husband and family are negative, my previous partners too, only I caught this dragon, unless you do risky practices together where blood is involved there is a pretty low risk of infection. 

Don't panic about ALTs etc, they do fluctuate even on those with no liver damage. Mine was very high recently and I was convinced I'd developed some kind of liver damage. It was gallstones, so as hard as it seems, try not to panic and wait for test results before thinking worse case.

Believe it or not, you do get used to having a disease and you stop feeling worried and panicked once you adapt. The fear does abate, when you realize you can not only treat it, but cure it for life. 

I know despite that you will worry like we all did, its natural and human. But just relax and try to focus on the positives. You know, which means you can treat. 

Anyway, I wish you both the best, it is the worst bit waiting for results, it gets easier after acceptance.

Cyber hug x

Hang in there Jane and Phil.  Look at all the support you have already.  Glad to see Cinnamon Girl and Linuster chiming in, too.   They know lots.

I have to tell you, I am 8 weeks post treatment and really feeling good.  I won't tell you that I was fine during treatment.  In fact I wondered if I would be my old self.  But I'm back at it!!  Phil will be too and, he may receive a different and more tolerable treatment.  This whole shock will fall into history in no time and you will find new strength, patience, and understanding to share with others, as we have.  

Take good of yourself and your family. 

Thankyou so much Jill we live in Wales near conwy it's just so much to get your head round isn't it? And the not knowing how or when aswel just adds to the difficulty of accepting it though wondering the how's and why's probably isn't helping either just hoping some kind of plan is put in place soon just not sure how long it takes for the first appointment to come through 

Many thanks 

Hi Jane (and Phil), just wanted to say hello and welcome!  

I live in the UK too, on the south coast of England, in West Sussex.   I`m so glad you found this forum, you`re with friends here, you`re not alone with this so try not to get too stressed while you`re waiting.  We all know what a shock it is getting the diagnosis and it can take a while to get your head round so much new information, so take your time and learn what you can as you go along. 

When I was first diagnosed I was so worried about whether my 2 young teenage kids were also infected but it all turned out fine, they were both clear, even though I`d been living with Hep C since before they were born, without being aware of it.  The virus can only be transmitted by `blood to blood` contact and it`s very rare for other members of a family to be infected through normal household life.

Talk to you again soon, keep in touch!  Best of luck to you both! 

Welcome Jane,

We are glad you found us. Rest assured that we have all been through what you are going through right now. Waiting for results or treatment is probably the worst part. The unknown, but know the treatments today are for the most part very easy and very successful so it is important to keep that in mind.

There is very little that you will not find here considering all the members and their individual stories and outcomes. Many are cured, many have been treated and are waiting for the news of a cure and others are just new and waiting for treatment.

You will find all the information you could possibly want with friends that understand completely what you are feeling. Take a deep breath and know you will get through this just as the rest of us.

Cheers.

SF

Well, rest assured Jane, it will get better and your husband will be cured. It's the fear of the unknown that is the worst, once you educate yourselves about the virus and learn how successful treatment is you will be able to move forward with a plan that you and your doctors come up with and move on with enjoying life.

Not to worry, it shouldn't effect work at all (no need to even tell them).

As for the kids, don't even worry yourself about it, there's no way they are infected.

Just as a precaution you should each avoid sharing razors or nail clippers and toothbrushes because of the remote potential for blood transmission but even this is extremely unlikely since someone using these would also have to cut them selves or have bleeding gums to somehow possibly transfer blood, not likely at all but it's good to be aware so it can be avoided. So not to worry about the kids or you for that matter, HCV just is not easily transmitted, with the exception of needle sharing, transfusions from years ago and occasionally tattoos if proper hygiene is not use to clean equipment.

So at any rate, it sounds like you are finding your way around here and meeting new friends, it's all good ... we'll be here if you need a thing. Don't hesitate to ask.

Dave