Does anyone know anything about Hep C? :-(

[Jellykat]

Today i found out that DS1s father is terminally ill with Chronic Hep C and Liver Cirrhosis, which are also causing serious problems elsewhere in his body. (We hadn't spoken for many years)

So, now i'm panicking - We were together 23 years ago, but have read that Hep C can take @20 years to get to the point his is at.

I know that my Liver is functioning properly, having recently had blood tested for other problems, but am worried about DS1 - he has been constantly tired, run down, and Jaundiced with huge dark circles under his eyes for months now.

He has just finished his degree, which required a huge amount of work, went straight into work that finishes at midnight 5 days a week, and has 'Gilberts Syndrome' from my side of the family- so up to now we have put his symptoms down to that.

What is worrying me now, is..
Would DS have picked up Hep C during the birthing process if i had it then/ Could i have had it during pregnancy or labour but not now?
In other words if i test negative now, does that mean he definitely is?

I am trying to eliminate any more stress for him atm, i don't want to tell him to take the test if all possibilities can be eliminated via me.

If the above makes any sense, does anyone have any advice or knowledge on the subject?

Thank you

I am sorry to hear what you are going through and I am sorry but I cant help with your specific questions.

I do think your son should probably get a full health check, especially as you say he has very dark eyes. Whilst tiredness is often used as an excuse, this is usually an indication of something else, and in most cases, is purely dehydration.

But I think it would be better to know if something is wrong now rather than wait until it becomes a serious problem and then may be too late to do anything about it. Too many of us ignore minor symptons and then look back and say "if only"

How does he feel about it all?

Doctors should be able to advise whether or not your son could have inherited the disease

Your son's symptons also sound like anaemia, so this would also need to be investigated

Hi, I'm so sorry to hear about your son's father's illness

I've had hep C (cleared the virus through treatment many years ago, and have been fine ever since) and know a fair bit about it as a result, though not about the latest treatments.

First of all, its quite unusual for it to be transmitted sexually - so unlikely that you did catch it, but even in the unlikely event that you did, again a very low risk of your ds picking it up at birth. So a double very low risk to start with - plus you know your liver functions are fine. I honestly wouldn't worry too much about it - but easier said than done, and of course no guarantees.

If you are tested and test negative, your ds would definitely NOT have caught the virus from you. Unless (an even teenier possibility) you were one of the very few who go into spontaneous remission.

Has your ds lived with his father, maybe shared razors or something? If not, it sounds pretty unlikely that he has caught it from either of you. If he's just finished his degree and is working late, he probably is run down and exhausted - with dark circles - and could do with some rest! Honestly, the odds are very much on his side in terms of HCV.

Its very shocking, hearing of a family member's terminal illness, and if that illness is potentially infectious - even more shocking, I think. Personally, I would probably concentrate on dealing with the emotional impact of that on my ds and not worry about infectivity at this point - maybe just hold it in mind for future discussion, and/or get yourself tested if you are concerned.

Later on, if you or he are worried, he can still take the test - a few months won't make any difference. If he did ever test positive, or you did, or anyone else you know - its very important to find out: treatment before cirrhosis sets has a very high success rate now. I had treatment over 12 years ago, and its been refined and is even more manageable now.

Wishing you both the best.

Thank you for answering Iamseeingstars

I don't think DS could be dehydrated, drinking plenty of water is a family 'mantra', he looks after himself well, eats well not just crap, but looks awful..

I haven't talked to him about this yet, as we live 150 miles apart, and his phone was stolen on Friday.. I haven't wanted to discuss this with him by email, but we guessed his dad was ill a couple of years ago when we saw his FB picture.. they haven't seen each other for 8 years.

I really wanted to eliminate any danger of DS having Hep C, purely via my being tested, so that he could concentrate on the emotional side of things with his dad.. but i guess its not going to be that easy maybe..

Oh X posted Elibean (I'm a v.slow one finger typer) .. Your post is very reassuring indeed, Thank you so much!

It has been a bit of a shock today, i had heard via a rumour that travelled 200 miles about DSs dad only having 4 months left, so then had to pluck up the courage to ring and get the true facts from him and his wife.. in times like this any previous animosity should be laid to rest, and was.. Of course i resisted the question of 'Why didn't any of you actually tell us?'.

I think i'll get tested, and not mention any possibilities of infection to DS for now, unless he doesn't pick up physically soon.

DS saw his dad for 1 night 8 years ago and wasn't shaving, i cant imagine he would've borrowed his dads toothbrush, teenagers not being brilliant teeth brushers. IYSWIM..

I'm just being over anxious i think.

Elibean, i'm so glad you cleared your virus and have been ok ever since.. Thank you again!

Jellykat i have been in your situation.

My DH has Hep C, having seen many Hep C experts in many different countries I have been assured (despite what it says on the internet) that it is virtually impossible to catch it through sex.

Recently, having just had a DS I suddenly got scared (in PFB way) and went and had the test and it was clear. Again reassured absolutely impossible to catch through 'day-to-day' things living with my DH and as far as my DS is concerned. Please don't worry. I promise you, I have been where you are but it is so, so, so unlikely that you have it and impossible that your son does. 20 years on, if you had caught it, your liver function would most certainly NOT be ok!

Try not to worry - it really is unfounded.
HTH :)

Have been with DH 15 years BTW.

Well done, JellyKat, on handling the delicate situation so well

I agree with Calypso. I honestly wouldn't worry. If it helps to hear it, a friend of mine had hepatitis C, but on the advice of her - top - consultant, went ahead and her babies before getting treated, as her liver was in great condition and she wasn't ill. Her dh is fine, as are her daughters, and she has now cleared the virus too. The risk via sexual transmission is very, very low - if it exists at all.

Calypso, sorry to hear your dh still has the virus. Wishing you both well!

Thanks Elibean

Sadly, my DH went through the new Interferon treatment for 9 months (horrible 9 months), 3 years ago and they thought it had worked but it hadn't - he has had it for too long they think - infected doctors needle when he was young.

But he leads an incredibly healthy lifestyle - and of course no alcohol, yearly tests and is just being monitored. His liver function hasn't deteriorated too much in the last 15 years so fingers crossed (although he does have cirrhosis which is to be expected)

It is really hard to get unless through needles or blood tranfusion; before the 80's when nobody knew what Hep C was. (I remember reading the lady who founded the Body Shop got it through a blood transfusion during birth - all her family were also fine)

Glad everything worked out for you and your friend Elibean - lovely to hear positive stories!

It is a pretty rough treatment, sorry to hear your dh went through all that then had the disappointment of a relapse Calypso. Not for nothing, though - at least his system had a break from the virus for a few months. Here's to ongoing good liver function!

ps Calypso, a friend of ours is going through a new treatment as interferon/ribavirin didn't work for him - he also has cirrhosis, but is very hopeful. Worth finding out about??

I am being much less of an emotional plonker today!

Granny is taking DS2 away for a holiday in a week, hopefully he'll put on some weight, get some sleep and return to a normal skin and eye colour. Then i can talk to him when he's less stressed... I meanwhile will get tested, but definitely without the fear i had yesterday, thanks to you lovely ladies!

calypso2008 So sorry to hear about your DH.
XPs problem is that he drank like a fish literally every day for 30+ years, and from what he said he continued to ignore advice until fairly recently..
A healthy lifestyle makes such a difference, i wish you both all the best for the future x

Not a plonker at all, but glad you're feeling reassured

I imagine a week's holiday will work wonders for ds....

Drinking like a fish is not exactly good news for anyone's liver, especially after 30 years - but on top of Hep C, definitely bad news. I'm very lucky, I've had a healthy life for the past 25 years (if you don't count having dc in my 40s!) and virus is long gone. Thanks, and all the best to you too!

Sorry to hear about your DS dad.

HCV is transmitted in blood, not any other body fluids, so it is rarely sexually transmitted. There is some good reliable data from patients studies to back this up. Anal sex, S&M, the presence of other STIs that cause open sores on genitalia can pose a risk due to the presence od blood.

if you have tested negative then your son will be fine. The first line test for HCV is an antibody, and even if you have had the virus and cleared it naturally (happens to 20 - 25% people) then you will still have antibodies. If that test is negative then you have never been infected.

Vertical transmission is approx 6% anyway.

Gilberts and a huge amount of work will explain your DS symptoms.

Check out the Hepatitis C Trust webpage - they are the most useful source of info to patients www.hepctrust.org.uk

HCV and alcohol are a bad combination and will accelerate the development of cirrhosis. I wish the pts i see would actually take that seriously.

Some pts with cirrhosis can be treated with antiviral medication, it depends on how their liver is coping.

Playing devils advocate here; some pts do make out they are "terminally ill" and in a really bad way to make current and ex people in their life feel bad (i have seen all sorts of behaviour and reactions over the years), and/ or to gain lots of sympathy. Cirrhosis doesn't always progress to end stage liver disease and people can die with it rather than from it.

If end stage liver disease occurs and the person is no longer drinking alcohol and otherwise healthy then they can be assessed for a liver trnsplant.

I have looked after pts with HCV for years now - happy to help with any other queries.

Just spotted a previous post;

It is possible to have HCV and have a normal liver function test - more commonly seen in genotype 1.

In fact you can have cirrhosis (from any cause) and have normal LFTs.

If anyone has HCV and normal LFTs don't assume all is well with your liver.

I would second that.

My friend had normal liver functions all the way through years of being monitored with, then treated for, HCV. (genotype 4, in her case)

purplewednesday Lot's of info there, thank you so much! and Elibean too

I eventually managed to gleam from our GPs' surgery, that DS1 was actually tested for HCV in 2005, when i first took him in for his 'yellowness'.. and it was negative! Such a huge relief!

Aah, so i shouldn't rest completely on my laurels re. my previous LFT.. i'll book a test tomorrow to be absolutely certain.

Interesting too, what you said about the 'milking it' possibility in this case. The same did occur to me yesterday, knowing that DSs dad has repeatedly tried to make contact with DS via FB etc and got nowhere up till now ... Still it's DSs decision, and he's going to mull it over with a friend (who is also from a single parent upbringing).. I've told him not to feel rushed into anything, he's nearly 23, knows exactly what his dad is like, so he'll think about things carefully.

Also interesting that his dad told me that he had 18 months left, (how did he know that?) but they wouldn't offer a transplant until the last minute in case he died on the operating table! The other things he's developed healthwise are managable.. Oh well..

Will check out the webpage now.. Thank you again

Because transplanting an organ carries its' own risks, people do have to have reached a stage where they are more likely to live if they have a new organ, than being transplanted and facing the risks that it entails.

There is some truth in his comments about not being tranplanted until the last minute etc.

He probably is pretty unwell if he has had a converstaion with Drs about transplantation.

Tough decision for DS to make; regret making contact vs regret not making contact. Only hindsight tells one if it was the right choice.

Difficult for you too having to support DS either way.

Unless you have any other independent risk factors for HCV, don't lose too much sleep over getting tested again.

Good luck - will be thinking of you!

I was looking for practical advise on Hep C as my sister has recently been diagnosed. I didnt realise that it could be passed on via blodo but I now remember her saying her partner was being tested.

In her case she was undiagnosed for years and now has severe liver cirrhosis, treatment now is pointless due to the liver damage so she need a transplant. She has been brilliant with her diet and abstinence from alcohol since it was discovered back in May of this year but she is really quite poorly.

Her prognosis is 3 - 5 years unless she gets the transplant.

Hi aarghhh (apologies if I've left out some 'g's or 'a's there - rushing a bit!), so sorry to hear of your sister's diagnosis. Cirrhosis is really a whole other condition unto itself, and I don't have personal experience of it - but can tell you that I knew a woman who had a transplant (following a diagnosis of liver cancer, she had lived with hep C and cirrhosis for years before it progressed to that) and was so, so much better after it. I've lost touch with her now, but last I heard she was well.

There are a heap of new treatments for Hep C coming out, less taxing than the old ones, and shorter too - so I suppose at least there is hope for those needing transplant that their new livers needn't be damaged by the same virus: its getting more and more treatable as more and more drug companies take an interest (sadly, they are doing so because of the huge nubers of infected people worldwide - may of whom aren't aware of it yet).

Its great that your sister is taking care of herself - that makes a big difference. Wishing her luck, and any info you want please do ask or - probably more useful to you - visit the Hepatitis C Trust website. I can't remember the addy, but just google them, they are really helpful.

Thanks for replying Elibean. I will check out that website. Its been a bit of a shock for the whole family, and I have not been impressed with the way she has been treated so far (NHS too hung up on alcohol intake when liver problems were found instead of finding out real reason Hep C - kept implying she was alcoholic when she wasnt).

I'm so sorry to hear this argghh Indeed, a terrible shock for you and your family. Your sister must keep up the good work being healthy and eating lots of fresh fruit and vegetables. Things like milk thistle and artichokes are good to help a distressed liver. Drink lots of water. She will be very tired so she must rest alot. Do they know how long she has had it? My husband has had it, they think, for about 40 years but was diagnosed 20 years ago. How did she find out she had it? (If you don't mind me asking)

Sending you lots of strength and best wishes for a transfer for your dear sister as soon as possible. They won't put my husband on the waiting list yet. I have heard it is one of the most sucessful transplants one can have (if that makes sense) so I hope she gets one soon.

Sorry to hear about your sister Argghh

As regards practical advice, check the hep C trust website. They have a number that you can phone to speak to someone there that either has hep C or has had it and been treated, as well as lots of info on the site.
Offering ongoing support to stay off the alcohol will be really important too, as she wont get a new liver if she is drinking. Christmas is a tough time, because so many people drink at social events.

The new treatments haven't yet been tested in post transplant patients, and they have a LOT of dangerous drug interactions, so for the time being it will be good old pegylated interferon and ribavirin. There are a lot of other new drugs in late stage tests so there are some really hopefull new treatments on the horizon (still a few years away in reality tho).

Elibean hope your friend is still OK, Calypso2008 that your DH is OK and JellyKat, if your're watching this, hope you are OK too

I hope so too, purple, thank you.

My best friend and I have both had, and been treated for, hep c and we both cleared the virus many, many years ago. I was pre-pegylated (poor me!) and rivavirin was still in trial mode: so even the old methods can work

DH has an ex-colleague who has progressed to cirrhosis, and for whom interferon/ribavirin did not work. We're hoping for the new treatments for him...

Good luck to all of you!