Just diagnosed with Hep C

I have just found out I have Hep C, I am 51 years old, I think I may have had it for almost 30 years, though I can't be sure. I have been fatigued for the last 5 years, I had some blood tests done for high blood pressure and that's when I found out. I started getting a pain in my side about 4 months ago, I quit drinking completely 3 months ago though I have been a heavy social drinker for quite a few years, It wasn't difficult to stop as I think I was more dependent rather than an alcoholic, and I would regularly quit for weeks at a time. No judgement for anybody who is by the way, I was/am no angel when it comes to self abuse. I just wish I had known earlier so I could have stopped earlier.

I see the specialist this week for the first time, so I really don't have a great deal of information regarding the state of my liver. The fatigue still hits me but the pain has lessened.

I was devastated when I found out, but I am trying to come to terms with it and learn all I can about my condition. I am trying to stay healthy, eating well and getting back into exercising. I just don't know where I stand at the moment or what to expect, the waiting is the hardest but at least I am getting professional help.

It's a very lonely situation as I am sure many of you understand so I joined this group to get some support and hopefully as I progress I can help others also.

Thanks for listening.

Mick.

14 Replies

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  • I hope all goes well, but you have to wait and ask the questions that effect you, writing them down can help and ask again if you don't understand.

    The loneliness is actually hard to bare, I still find it difficult as you become know as a none drinker (which is an absolute must) hence why so many of use get such comfort from web sites like this

  • Thanks David, That's good advice. I did find out that my Viral load is 72,000, but then I read that it doesn't really mean much as it can change from day to day and is not really an indicator of liver health, ( I think ? ).

    Thanks

    Mick

  • I was diagnosed with Hep C 15 years ago but never felt any side effects, and as a result of that I ignored the advice given to me by the consultant at the time, I continued to drink on a daily basis while still running a company as well as keeping two family's, so I guess I wasn't that dependant, now there is treatment available for Hepatitis but again in my wisdom I declined it, and yet after all that information I was surprised when I got cirrhosis of the liver!!!! So as I type this I'm on my way to St James's hospital 13 wks after having a liver transplant, I guess what I'm hoping you will get from this no matter how bad the news may be there is always hope and help, good luck with your appointment

  • Hi

    I had hep c some years ago and like you I must have had it since the early 70's without knowing.

    I must have got it from tattoos I had at the time.

    It came as a complete shock when they told me. They found out when I went to give blood after the London bombings.

    I went to see the liver specialist and was put on a drug treatment for 6 months Pegylated Interferon that you inject once a week and Ribavirin tablets that you take 4 times a day.

    The side effects are not very nice but it effects people in different ways this was a 6 months treatment.

    It did the job and cleared the hep c but after having the regular blood tests I was told that it had come back.

    I was then put back on the treatment for another 12 months and am now hep c free.

    Because of the hep c and drinking over the years the damaged liver cannot get any better and I still have to go for regular scans and blood tests as the next stage could be liver cancer or failure so they tell me.

    I had the new Fibroscan done a few weeks ago and go for the results on the 17 oct.

    You may be offered the same treatment that I had or something different but you can clear the hep c.

    I still get very tired on a daily basis like you but as I say I'm now hep c free and at least I don't have anything attacking my liver now.

    Good luck in the future and let us know how you get on.

    regards lance

  • I was fortunate to receive a liver transplant after years of heavy drinking. You are correct in abstaining. You mention patience and you will need to be. It was a year before I was eventually referred to my nearest liver transplant team (these units a few in number ). I then spent a year having random blood tests ( the unit has to be convinced you have given up alcohol ) before I was placed on the waiting list. Donor livers are in short supply and dependant on various factors, your blood type is one example. I waited 18 months before my turn arrived having to remain within 2 hours travelling time of the transplant unit. You can understand your need for patience. I wish you the best of luck and finally I would suggest you tell your friends etc about, on death, they consider joining people who agree to donating their organs for the benefit of others like you and I.

  • Hi Mick, I was in the same position as you in june this year, still am really. So don't panic, I did and made myself feel a whole lot worse!! the mind is a powerful thing so be calm if you can at this scary time. I found out I had hep c again after feeling very tired with my legs aching all the time, feeling sick, losing weight. I have been referred to a hep c specialist and he has been amazing and very confident he will cure me! I have had a scan and am awaiting a liver biopsy, I have type 1 hep c and will begin triple treatment soon. I have stopped drinking, probably the best thing i have done as i feel much better for it, booze is a poison to the liver right now. I must say i am looking at treatment with some fear as i believe the side effects can be quite nasty. I don't really live with regret but my god i do regret my heroin years as i believe that is when i got this virus, nearly 30 years ago. Anyway good luck with your treatment, be kind to yourself and don't panic like i did!! P.

  • Thank you everybody for your messages, I am hoping that the damage is not severe enough that I have to make any immediate decisions. I was supposed to be moving to the US. next year, ( I lived there for quite a while until a few years ago and came back to the UK because my mum has Alzheimer's ) . I still have a business over there that my partner runs, I have to go over periodically and I am worried that I won't be able to travel whilst in treatment. So this is a dilemma for me. I suppose once I see the specialist I will know more.

    On a good note I have really started to look after myself and I am feeling physically much better. Mentally, well that's a day to day thing right now, I am considering taking up yoga and perhaps meditation which , " is just not me " but I feel now I am another person, amazing what sobriety will do for you eh ? I am also learning a lot about nutrition and supplements, I know that wont cure it but I hope it will slow things down at least, and apart from the constant cloud of Hep C hanging over me I actually feel a lot better than I have in years especially as the pain seems to have abated, whether that is just temporary remains to be seen.

    Believe it or not I actually only injected once with an old roommate of mine back in 83, so I feel pretty unlucky in that respect, but that's life I suppose. But getting it from a tattoo or a blood transfusion seems especially unkind. One thing that really upsets me is I donated blood in 87 so more than likely I've given it to some other poor sod. Anyway I won't dwell on all that because that's the past and we only have today and the future.

    I promise to let you all know how things progress and many thanks for your openness, and kindness.

    I am curious to know if any of you have experimented with diet, supplements , ( e.g. milk thistle or liver detox ), exercise ect.... as the GP didn't really go into that .

    Peace to you all

    Mick

  • I had a baby in 1973 and had a blood transfusion of 14 pints. Was very poorly and kept going to doctor who thought I was a hyprochondriac because he could never find anything wrong with me. In 1991 Blood transfusion service came to where I worked. I gave blood. I received letter 'thanks but no thanks' and was advised to see my doctor. I was referred to hospital and diagnosed with Hep C and slight cirrhosis. I stopped any alcohol even though I hardly drank. My GP apologised and explained blood was not tested when I had transfusion. About 15 years ago went on 'first Drug Trial' of Interferon and Ribovirin. After three months received phone call stop medicines because there was no improvement. I have genome 1A. Last September (2012) whilst on holiday in Turkey I had a pain which told me to go to hospital. Had ultrasound and was told I had mass on liver, went to uk and had third removed in January this year. I now have been told I have Fibrosis not Cirrohosis as first told. .

    My advice to you Mick is check up (maybe on the internet) on the latest Hep C treatment available. I understand from my Consultant that there is an excellent new treatment available in 2014 (I am precluded because of my Liver C) - insist on regular Ultrasounds and ask for a Liver Biopsy if not offered. - that will tell you the state of your liver. Best wishes.

  • Oh my what a story I honestly don't know how some of you have kept your sanity. I actually tried to give blood about 3 years ago in the US , unfortunately I didn't have my driving licence on me so I couldn't donate, I'm kicking myself now because I would have discovered it sooner.

    I have heard of a possible new treatment that is of a short duration , has a high cure rate and is just a couple of pills, I heard two drug companies are arguing over it or something.

    I may have the option of being treated in the US. I have only been diagnosed here so it is quite possible I could get insurance to cover it, especially in 2014 when you cannot be refused for a per-existing condition. I am not sure if it matters either way , unless the new treatment is only available over there, I am hoping.

    I have had an Ultrasound which indicated that....

    The liver is mildly enlarged, irregular in outline and has a coarse and bright echotexture. No obvious focal lesion seen.

    A solitary gallstone measuring 13.5 mm

    CBD is note dilated and measures 3.5 mm

    The spleen is homogenous in echotexture but is enlarged

    The portal vein measures 20.0 mm

    Kidneys are normal

    The pancreas is grossly normal ( ? is that good or bad ! )

    Of course I haven't a clue what any of this means really. I did get a copy of my files to date just in case I travel to the US and need them.

    Thank you so much Tatjana for taking the time to post, I will take your advice to heart.

    XXX Take care.

    Mick

  • I have had the Hep C Treatment. and it went well. To all who is scared and awaiting Treatment. please take this advice. Create a Good Reliable Support Network, weather it be your Family Partner. or even Self Help Groups this really does take the pressure off. No need to Panic its going to do more good than Bad. Do everything that your Specialists say, (And I Mean Everything.) If you Drink Alcohol THIS HAS TO STOP !! Think of your Family friends and most importantly your self. MY Treatment went Fantastic with all these steps. No Side Affects, just Pure Commitment.

  • Join the HEP C Trust.

    Also there is an excellent book on Hep C written by a female American Dr - forgot what it's called but you can get it on Amazon - just search Hep C.

    There are new treatments coming out in 2014. Check into those as current treatment does make you feel very ill - worth it if it cures you - but you won't really be in a state to be doing long haul flights. You must do treatment to give yourself the best chance of killing the disease and slowing down the damage already done.

  • Thanks Sheana, I did join the Hep c trust and called the helpline once, very nice people.

    I may have no option but to fly Long Haul, I need the work , the specialist thought it would be OK and I do have help at the other end.

    Hopefully I can put the treatment off until the new treatments come out , by then I can schedule a block of time devoted to getting fixed. The specialist said they do the clinical trials at the hospital I am going to, so hopefully I can get in on that. I won't know my Genotype until my next visit on Nov. 13th, then I will know better where I stand.

    It's been very difficult here as I have very little support , I just try to eat well and exercise and get as fit as I possibly can , the depression is getting to me though but I try to stay upbeat , I haven't written much because I am just waiting on the appointment and I don't think I can do much more than I am already doing. I can't find a support group in Manchester so I just try my best.

    I'll try to find the book though I have read quite a bit on the subject , but once again without knowing my genotype ........... ? I'm just in limbo.

    Thanks for your concern, I appreciate it.

  • Hi Mick, I am new here and just saw your post. I hope things have been going well as your post is a few months old....................................I have Hep-C, I can relate very much to how you are feeling. I am 59 years old and was diagnosed with this late 2005. I went on the Interferon treatment for 11 months early 2006, went into remission but short of three months later it came back. I had this (Dr. says) for about 15 years before it was found. I am still with Hep C and have been doing everything to keep healthy to feel better. I have some pretty rough days but try to keep positive and out of myself...................pretty hard sometimes but have to get on with it as it is with me everyday. I try to eat healthy, exercise, and keep busy as it does help. I don't know to this day how I got this but had a blood transfusion many years ago, also was into drugs back in the old days. My husband of 22 years has been tested for this and does not have - for this I am very thankful. I have blood work done every few months along with some meds that help with the health problems I have from this, but according to my doctor I am remaining stable through this whole thing.

    I saw your post and just had to reply, it is hard when you really don't have anyone to talk to that really understands.............I am there so if I can help you get through this by being a friend, I am here. :)

    Keep the faith ~ hope it gets better for you.

    Dora33

  • Hi,Its a freaky thing to find out I know,It appears I've had it for thirty years-caught off my brother-now dead (54),and a very sudden liver collapse.I'm 52 and I deteriorate somewhat lately.Try not to drink-I'm ashamed to say I still do.Don't panic,this thing tends to move slowly,but surely.Dont start taking all sorts of whacky herbal rubbish due to internet opinions,most of them don't help,and indeed can harm you. Try and slash your salt intake- its tuff,we are pretty much force-fed it in processed foods.Drop or stop eating red meat,its a big processing ask for your liver.Above all,no approved drugs at all-paracetomel/ibuprofen-no drugs the Docs cheerfully dole out-they are poison.Lots of water,I think is good,watch your stools,(t.m.i)!,pale bad,darker, good.The available treatments start to improve-,subject to funding-i worry some quarters think-'it serves you right-go away and die quietly'.DO be thoughtful and careful to those near you regarding your personal hygiene-this is not stressed enough in my opinion, we have a duty of care to those we Love.Above all,don't panic-this is NOT a death sentence. Enjoy the rest of your life,and live it to the full,best to you.

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