A Glimmer Of Hope...Or Is It?

Why does the UK seem to so far behind the US and other countries in the treatment and mangement of Hep C? We were looking for a local Hep C support group recently and couldn't find one at all. My partner was working as a Criminal Justice Drugs Worker for 6 years and one of his tasks was setting up a Hep C support group in a city 30 miles away - that group seems to be the closest one to us. Am I unreasonable to think there should be a Hep support group in every City? UPDATE: My mistake, there are actually 2 support groups here, however neither are suitable for my partners needs. One reason is that he worked as a drugs worker, all his clients with Hep C go to these groups and he doesn't want them to see him. Another is that a lot of the people who go to these groups don't actually have Hep! Refreshments are served and it's more of a social event than a support group (a lot of the local homeless attend). Another reason is that he doesn't think the people running the groups have sufficient knowledge on the subject and cannot offer him the support he needs....

Not to mention the treatments. I read a very interesting article last year, documenting the REALIZE study. If you're not familiar with it, it was a phase 3 study of Telaprevir (a direct acting anti viral agent) which involved patients with Genotype 1 Hep C who had previously failed to respond to currently available treatments. The study showed that 83% of these patients who had previously relapsed on existing treatments, were successfully cured with the Telaprevir.

So when exactly is Telaprevir going to be available in the UK to those who fall into the above catagory? This treatment sounds perfect for my partner. Not just perfect but possibly his only hope of beating Hep C. Once his system is clear of the virus we could begin to look into lengthening his life with a transplant which obviously would be impossible at this stage.

If I look online for research studies, drug trials etc, everything seems to be happening in the US. The closest we've found in the UK are volunteers required to give blood and tissue samples for investigation. That's all well and good but where are the clinical trials??

I feel like we are being kept in the dark and it so frustrating.

Risk Factors - At What Point Does Being Careful Become Being Paranoid?

When I first found out my partner had Hep C I was livid. Not that he had it soo much as the fact that he'd deliberately kept in from me. we'd been in a sexual relationship for about 5 or 6 months. I know the risk of contracting Hep C through intercourse is classed as being extremely low to nil but it doesn't stop you panicking. I started thinking of the times I'd kissed him when he'd cut his lip or when I'd stuck a plaster on his finger...

I made an appointment the next day to see my G.P - hoping to put my mind at ease and get advice on how best to protect myself and the kids from being infected. My doctor was great, he told me straight away to stop panicking and arranged for immediate blood tests. He said that he wanted me to have a full viral assessment saying if my partner had hidden his Hep C from me, what else could he be hiding? Me and Mr C want to have children together and I was worried it might not be safe under the circumstance. My doctor explained that we would be fine trying for a baby and that if I hadn't already been infected, that it was highly unlikely I would become infected in the future.

My blood tests came back 10 days later and all were negative thankfully. Since then I've never worried about contracting Hep C through sex and it's great being able to have that normality.

We do follow general 'safety' though. The kids know they are not to use or touch my partners toothbrush and razor. We've never told them about the Hep, just that you can get ill from touching those things. The other week Mr C had filled the sink ready to do the washing up and just before he started had cut his hand quite badly on a piece of glass outside. Without thinking, he went straight over to the sink to do the washing up. At which point I'm dashing across the kitchen telling him to leave it and that I'll do the dishes. There was a stunned silence then Mr C walked away and joked he'd cut his hand just to get out of doing the dishes. This is a good example of how he tries to deal with things, by making a joke of it. I know he was hurt that I stopped him but I don't want to risk the safety of the rest of the family.    

Damned If You Do, Damned If You Don't

Obviously, one thing that is vitally important in any relationship is support. This is even more true when your partner has Hep. There is however, a fine line between support and smothering as I have found out.

Mr C was told by his consultant that he had to adopt a very healthy lifestyle - plenty of exercise, a strict diet, no   alcohol (maximum intake of 1 pint a month). Since we've lived together, Mr C has lost over 1.5 stone in weight which is due to me only cooking healthy food and cutting right back on snack foods. He is fine with the diet, mostly. Every once in a while he craves pepperoni pizza. Not a good meal for someone with a sick liver really but he feels like he has to have he things from time to time. We reach a compromise, he can have the pizza if it's thin and he eats plenty of salad with it. That way he gets his pizza fix and I don't feel so bad for letting him have it as it's balanced out a little with the salad.

I tend to play the bad guy in our relationship. We have a lot of fantastic friends who we love to spend time with. Unfortunately, that time tends to be weekends or evenings at gigs or other events where alcohol is served. Even something as simple as having friends over for a meal can lead to frustration because Mr C is a social drinker. Booze for me is simple - I can take it or leave it. According to Mr C, I am odd because I drink alcohol because I like the taste not the effect it has on me. To be fair I never get steaming drunk anyway, just a little merry tops. But Mr C drinks because he enjoys the effect. It's only when he has a few drinks inside him that he can relax around people and let all his Hep worries go.

So now's the part where I end up being a bitch. Do I let him carry on downing pints or do I gently remind him that the booze is doing him more harm than good? We go out with a 3-4 pint limit. I know it'd be pointless asking Mr C not to drink, he'd rather not go out at all. We went out recently for his birthday, just a nice night out with friends - a meal then a few drinks in the local pub. Well, that was the plan. We staggered home at 4:30am. Mr C had drunk a ridiculous amount, despite me voicing my concerns every time he went to the bar. At one point I was in tears, practically begging him to stop. He made it quite clear it wasn't my place to say how much he should or shouldn't drink. That I ''have no idea what it's like to live with a terminal illness''. Exactly. I have no idea what it is like, I can only begin to imagine. What I do know is that I have to watch the man I love damage himself and lessen the time we will have together. That my little girl adores him and has called him Daddy for the past year, that she is going to have to be told at some point that her Daddy is dying.

I keep thinking that if it was me with Hep C, I'd be doing everything in my power to lengthen my life and improve my quality of life in the long run. That's what I like to think I'd do...but when it comes down to it, I don't know how I'd react to it at all. I might be like Mr C and think fuck it; I'm only on this earth once and my life has been cut short as it is, I'm going to enjoy every second I can.

Sex...

OK. I'll warn you now. Sex is probably going to crop up a fair bit in this blog. I wouldn't go as far as to say I'm a nympho..though I have been called one on a number of occassions.

Hep C will play havoc with your sex life.

Before I knew my partner had Hep, we had a fantastic sex life. Neither of us could get enough. As soon as he admitted he had Hep, things took a turn for the worse. He says that he struggles with the idea of sex as he feels "dirty" by "carrying the virus". It doesn't matter how many times I tell him nothing has changed and I don't feel any different towards him at all, he finds it hard to believe.

Psychological issues aside,  there is also the fact that with Hep C comes fatigue, nausea, loss of libido etc, etc. Mr C (my partner), beats himself up constantly because he feels inadequate. We are lucky if we get to have sex a couple of times a month. Because of this, he is always paranoid that I'll get bored of him and leave him for someone else. This is never going to happen by the way. I love my man more than life itself and he knows that, despite the fact he has trouble accepting it.

I spend a lot more time than I'd care to admit being totally and utterly frustrated. The fact that I feel I can't let my frustration show (for fear of upsetting Mr C) makes matters even worse.

I'm not sure where we go from here. All I can do really is be patient with my partner and hope he gets past this problem somehow. He gets so depressed about our (lack of) sex life. He's joked about Viagra many times, the doctor even told him to watch porn to see if it helps - it doesn't! We'll still watch it anyway..who knows hey?! Until things get back to "normal" I guess I'll just carry on enjoying the limited sex life we do have. It IS limited but the little we do have is GREAT.

Where It All Began

I met my partner (let's call him Mr C) back in 2010. I'd recently ended my 10 year marriage and was looking o get my life back on track and gain some stability for my kids. Mr C was a breath of fresh air; quick witted, brutally honest, very caring and generally amazing to be around. Maybe a bit cliched but we just seemed to click. I made it clear from the start that I wasn't looking for a relationship and he said he was happy to take the friendship I was offering but live in hope of a little more. Luckily for both of us, he grew on me and after a few weeks of spending almost every day together, I finally conceded and we tentatively began a relationship.

It was during these first few months that I started to notice his moods. He would be happy one minute and in the darkest mood the next. He explained that he suffered with depression, I've battled with it since the 90's so could understand where he was coming from. I didn't think much more about it to be honest. Then he would get ill, sometimes after drinking, sometimes from eating certain foods. Stomach problems flared up and I noticed dark, yellowish shadows around his eyes. Then one day he explained that he had some liver damage, that due to his past his liver was very scared and affected his health in various ways. I already knew that he had previously been an I.V drug user for almost 20 years, so with his various health issues I thought it wise to ask if he had Hep C. His answer was immediate ''No, of course I don't. I've never had Hep in my life''.

A few months after we had that conversation, it came out that he did have Hep C. He had gone through a year of gruelling treatment which had been unsuccessful. Mr C has Genotype 1 HCV (Hep C) which is often hard to treat.

Every day is a new experience living with someone with Hep C. I never know what to expect - what kind of a mood he'll be in, how his health will be. Each day is just a case of suck it n see. Sometimes Mr C is exausted just getting out of bed and dressed in the morning. He suffers from terrible nightmares and night time can get a little rough - I've been punched and kicked on occasion and all whilst he is fast asleep.

So this is where my blog comes in. I'm going to start giving a day by day account of the trials and tribulations of living with Hep C.....