DH having Hep C treatment - anyone got experience?

[Eggwhisk]

Hi, I'm usually a lurker but really need some support/advice. My husband is currently going through hep C treatment which is really bloody nasty and he is really suffering from the side effects. His treatment is scheduled to last approx 48 weeks and I think we are on week 5! I'm not sure how we're going to get through the next 43 weeks :-(

Any experience/ hand holding much appreciated

[Thymeout]

Sorry - not in great detail, but a colleague of mine went through this. She had a dodgy blood transfusion after one of her labours. The Hep C was discovered purely by chance, many years later, no symptoms, so she was lucky.

I do know that she was off work for a long time and found it very hard. Virtually stayed in her bedroom and communicated only by text. Lots of offers to visit her, but she found it easier to cope by cutting herself off from the wider world.

However.... she is now very much back to normal. Firing on all cylinders full of joie de vivre. Just celebrated her 60th birthday with a huge - and v loud - party.

Hope someone comes along soon with better information.

[Elibean]

Yes, I had treatment with interferon and ribavirin in 1998

No fun at all, but I got through it. I didn't work, but I did plan and attend my own wedding in the middle of it! The first few weeks are usually the worst (I had a week in hospital around the 10 week mark), although the last few weeks felt like hard work in a different way. Do PM me if you like, I'd be happy to help if I can.

[calypso2008]

Hi OP, I was not sure whether to post, but I am going to.

I feel very sorry for you and your husband - you have my heartfelt sympathy. My DH went through this 4 years ago - it was dreadful, I am afraid I have no positives about the treatment whatsoever.

It also didn't work, so all that for nothing. The worst thing was the personality change which happened about month 3 and obviously my por husband suffered so much with the saide effects which just got worse and worse from there.

Rub cream into the sores that he might get on on his back and legs, feed him things he might fancy to try and keep his strength up and just have as much patience as you can if it affects his moods. He will be extremely tired. Lots and lots of wáter helps.

My DH has been offered the latest treatment and has refused.

Having said that, you may be on the latest treatment and it is meant to have a far higher sucess rate. Also it depends on the genome, some are easier to clear than others. Also his age, my husband was older, so all in all your husband may react quite differently and it could be a huge sucess.

Sorry to be doom and gloom. I did have a brand new baby at the time, it probably didn't help. DH totally missed her first year.

Good Luck and I am here to hand hold and any information you need, I know a fair bit about it.

[Eggwhisk]

Hi everyone, thank you for the replies, I hadn't checked back to the thread as I'd given up hope that anyone would respond:-)

calypso thank you for you story, it really does help to hear from others who have been in the same position. I'm really sorry to hear it didn't work for your dh. How is he now? My husband is really suffering with the side effects and I just feel so awful and helpless. He appears to be having some kind of allergic reaction and has been having terrible rashes and itching. Last night he didn't get any sleep at all and has had to go to work today:-(

We do know of a few other couples in rl that have gone though it, but only by association really rather than having anyone to talk to in depth about it. We knew it was going to be tough and have pretty much made no plans at all for this year but with 3 dc to look after and entertain we can't do nothing for the year. Luckily I'm a SAHM so have completely taken over everything to do with house, garden, children etc and my dh just joins in when he can.

Sometimes I feel a bit resentful which sounds awful but I really feel like I can't even go out for a half hour run as I'd be leaving him in charge of the dc. They are 9, 3 and 17 months so can't just leave the little ones to get along with it.

Most days are fine though, I seem to have a bit of a melt down once a week and then i dust myself off and get back on with things. I just hope it works and next year we can start living our lives again.

Thanks again for your replies

Egg whisk

[calypso2008]

Eggwhisk Yes, the itching all night and then the ensuing rash I remember well - that's what I mean about putting cream on, my husband had rashes all over his legs and back. Then the bruised stomach from the injections.

It sounds like you have a strong and positive attitude and you are wise to have nothing planned this year. It also sounds like your husband must be much younger than mine - believe me, this makes a huge difference in success rate.

I so understand you saying at times you feel resentful, of course you do as you are totally taking over all family responsibilities - this is exactly how I felt with a newborn.

Thanks for asking about my DH - he is fine, he has had the virus (from an injection when small he thinks - two of his friends with the same doctor on the same street he lived on, also have it) for 30 years, so a long time. It was only discovered by accident. Anyway, obviously he drinks no alcohol, he eats extremely healthily, is retired now and has constant monitoring checkups. Nothing has changed vis-à-vis viral load but he has cirrhosis, but has had this for at least 20 years.

He can't face another round of treatment. One of his friends, a lady, gave it up half way through. It is tough, but if you can get through it you will feel like you can get through anything, also, look at the positive stories above from elibean she knows a lot about it and has given me great advice in the past.

Best of luck to you and your husband and DC's - in a year it will all be over! Less than a year.

[Eggwhisk]

Thanks again for your reply. My husband is 36 and has also had this virus for 30+ years as he received contaminated blood as a child, he is also HIV+ too so were are used to the hospital and illness etc. He doesn't normally moan about anything which is why I know he is really suffering:-(

I need a bit of perspective here as we have just had a biggish (for us) argument. Before this treatment started I agreed to help my friend out in her shop for 2 days (whole day and 1 possibly 2 overnight stays) I agreed as I could do with the money and also it's really good fun. One of the days was last Saturday which his mom was supposed to be helping him with. Obviously i wasn't there but from the sound of it he didn't get the help he needed and he also made life difficult for himself by taking the kids to go and buy gifts for his grandparent which wasn't necessary as could have been done the next day when I was there. This then led to texts to me saying how badly things were going for him therefore making me feel guilty for not being there.

I'm due to help my friend again on Sunday and will be away over night, now we have just had a row because he feels like he won't be able to cope with getting the eldest to school on Monday morning, amongst other things. My parents are having two of the children on the one night and most of Sunday so he'll only have ds1 (17months) to cope with. I've said to him if he can't get dd1 to school the it won't be the end of the world if she goes in late/ has the day off.

I just feel so cross as I'm always there to pick up the slack and all I want is 2 days out of the year to do something for me. Is that so unreasonable?

[somersethouse]

Hi eggwhisk It is tough.

What day does he do the injection? My DH was always really bad the first 2 days after that, very weak. He chose to do it on a Friday, so had the weekend to recover, has your DH done the same and therefore is most weak at the weekend?

I feel for you, I really do. I know my DH could no way have coped with the above. You are not being unreasonable, but he feels like death warmed up I imagine. I really, truly understand your frustration. It is so tough on the whole family frankly.

[Eggwhisk]

Hi Somersethouse,

My dh has his injection on a Tuesdy, and i have noticed he gets worse everyday after that up until about 2 days before he's due the next one when he perks up a bit.

I think I was probably was being unreasonable and selfish the other day and probably was expecting too much. We're all sorted now though and my plans still stand, we've drafted more help in though. Has your dh finished the treatment now? I hope it all worked out for your both.

The thing I'm finding difficult is what to tell people. For example we have a party to go to tomorrow and I know dh isn't looking forward to it but it would look weird if we didn't go. I tend to say he isn't very well ATM, but people will start asking questions if I keep on saying that for months on end!

[somersethouse]

eggwhisk hope the party went well.

Thing is, your DH can't really do these these things right now. He is, in effect, having chemotherapy.

I have read so much about this treatment, you can't have it if anyone in the family has a history of depression, for example. It really is a tough treatment to go through.
I tried to act like life was normal, but it was silly of me, to be honest.

I also found terrible stigma attached to DH having HCV. I didn't want to explain and he certainly didn't want to explain. He could not leave the house by the end, to be honest. That is the hardest bit, you both become so isolated. I think you have children too, so it is doubly tough on you as you will have to take the slack, no two ways about it.

Yes, absolutely to the two days before injection perking up a bit. Everything you say rings true to me.

Hope it works out well for you. Unfortunately it didn't for us, but we are still doing well despite that.

Keep posting if it helps!

[Saralyn]

My mum had the threatment in the 90's, when i was child.

She was quite ill with it, but did manage home life, she was a single mum and had me and my brother 80 percent of the time.

it must be really hard on you all, I don't think I quite appreciated how ill my mum felt at the time. She was signed off work completely, is your husband still working? Is it not possible for him to be signed off by the doctor?

I just wanted to say, regarding stigma, and not wanting people to know: i totally get it, my mum told very few people, as she is a teacher and thought the parents might be worried or think she had a past with drug use.

But, I was a similar age to your oldest child, and I found it really hard to keep the secret, having to say that my mum was ill, but not being able to say why. Might have been better if I had been provided with a "cover story".

Also, I wanted to share the really good news that for my mother the treatment was completely sucessful (and this is 15 years ago, so it is probably much better now), and it is no longer possible to detect the Hep C in her blood. Also, she did not pass it to my brother or me when she was pregnant and didn't know she had it. So, will cross my fingers that your husband is cured (not sure if that is medically the correct term, but you know what I mean).

[Elibean]

Just wondering if any of you have/had contacted the Hepatitis C Trust? They only started after I'd been treated, but I think I would have found them very helpful earlier on - especially in terms of not feeling isolated with stigma etc.

Wishing all the husbands, and you, well!

[Joliebean]

Hi eggwhisk I'm going through this now DH 4 weeks into treatment and it's awful - i wondered how things went in the end for you guys