Newly diagnosed Hep C I have no inform... - British Liver Trust

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Newly diagnosed Hep C I have no information

10 Replies

I've just been diagnosed with Hep C today... I'm expecting an appointment for an ultrasound and a fibroscan and I should start a course of treatment in a months time. Apart from that I have no information. I think I may have been in shock when I was told and did not ask any questions. I guess it is hard to speculate without any test results, but I'm 62 and was told this is chronic, my symptoms are diminishing platelets.

1. Should I inform my employers? I do not want to put anyone at risk.

2. I'm assuming the tablets will not start until after they have assessed my liver damage to see if it is too far gone. Is that correct?

3. Is there something I should be doing? diet? I rarely drink alcohol, maybe 12 shandies per year, but I have never really eaten fish or vegetables.

Any advice or information would be appreciated

Thank you

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10 Replies
chrisw740 profile image
chrisw740

Hey Gravy

It's understandably a shock. You've found your way here and BLT have some useful pages on Hep C on the main site.

Antivirals are considered an effective treatment for Hep C so, after several weeks treatment you may well be rid of it as these drugs have a really high success rate (with few reported side effects) That said everyone’s experience with Hepatitis C is different.

I'm unaware of what rules if any apply in terms of your obligations to your employer. There may not necessarily be a requirement to tell others in your workplace ... the only reason you’d absolutely need to do this is if your job involves any risk of blood-to-blood contact. The Hep C trust may be able to advise you.

hepctrust.org.uk/

It's encouraging that these two scans have been arranged for you to assess what damage has been done. Your liver may well recover somewhat post antiviral treatment but let's not assume anything before it's properly assessed. The apparent lack of current symptoms is obviously encouraging.

Moreover, it is worth pointing out that it's useful to repeat a Fibroscan after completing antiviral treatment. A Fibroscan measures how stiff your liver is (i.e. does the liver have any damaged, fibrotic tissue in it) The lower the score the better. But, because the Hep C virus leads to an inflamed liver (that's indeed what hepatitis means) a Fibroscan score can be temporarily raised by all the inflamed liver cells because they read as much stiffer than healthy, soft liver cells.

For now I would stick to a generally healthy, unprocessed diet (avoiding added sugar, salt bad fats etc and of course no booze) Your dietary needs may change depending on what stage of liver disease you're at. One size doesn't fit all so frankly at this stage just avoiding crap (but maybe not avoiding the fish and vegetables you mentioned) seems like a safe plan. Again check out The BLT pages.

Others may have better advice so, I will just say that whatever feedback you get only act upon the proper medical advice. Indeed, it's worth asking your Dr about pain medication (if you have cause to need any) as you mentioned low platelets which means your bloods ability to clot may be reduced and some common anti inflammatory meds like Ibroprphen and Asprin can seriously exacerbate this.

Best

Chris

in reply tochrisw740

Thank you for taking the time to write that. It really means a lot when you feel a little isolated and like a rabbit in the headlights, not knowing what to do.

Ruby1960 profile image
Ruby1960 in reply tochrisw740

Hi ChrisI am 61 and was shocked to be diagnosed with Hep C July 2020. No symptoms apart from my LFT’s being raised. Fast forward to present and am now clear of the virus following 12 week course of treatment. Sadly I now have cirrhosis which is irreversible.

Do you know how you caught the virus? I only ask because if you have had a blood transfusion before 1991 it’s possible you received contaminated blood and will therefore be entitled to some financial support.

Take care

chrisw740 profile image
chrisw740 in reply toRuby1960

Hi Ruby

I'm don't have HepC and am not the original poster.

Hopefully Gravy will see your reply and the useful information you shared.

Best

Chris

Ruby1960 profile image
Ruby1960 in reply tochrisw740

Oops, sorry. Thanks for letting me kniw

in reply toRuby1960

Hi Ruby,

Thanks for replying. I have had a few hours sleep and the initial shock has worn off. I worked in a hospital for almost 20 years as a porter (Orderly for anyone in the USA) and for the first few years, apart from, moving patients and equipment, my duties involved waste collection and disposal. During that time I had at least one needlestick and several scratches, cuts etc.... I can only assume I got it there. All jobs carry some risk, even office work.

I was shocked because my doctor did not tell me anything except my blood test showed a small problem. My consultant told me I have Hep C and, probably due to my look of surprise, said "didn't your doctor tell you?"

Being unprepared and a little stunned, my mind went blank and I could not think of anything to ask (or say). Which is why I'm here, having people reply has eased my sense of being alone and hearing other stories makes me less worried about my immediate future.

Thank you again for replying.

teletonetapper profile image
teletonetapper

Hi there Gravy58. I was diagnosed with Hep C in 2018. I was seen by a first class Consultant and Hepatologists and prescribed a 12 week course of a new treatment at that time. The tablets did not affect me and I continued to work. As stated by chris740, I was extremely careful at work due to "bloods". There was a noticeable difference after 5 weeks of treatment and was given the all clear but had to finish the treatment. Various other investigatory procedures were taken and the Hospital still do a 6 monthly check up with bloods etc. You will be fine I am sure. Take care and stay calm. x

in reply toteletonetapper

Hi Teletonetapper,

Thank you for replying, reading your story has made me feel much better about my diagnosis. The first thing I did when I got home was to look at cheap cremations, but now I realise I may be getting ahead of myself.

I have emailed my doctor, asking if there is a reason I need to wait a few weeks before starting my 12 week course of meds. My consultant said he would arrange an ultrasound and fibroscan. At first I wondered if the meds are dependant upon the results, I do not feel unwell, a little tired and my platelets are a little low, but my current job is manual work, sometimes long shifts and 60 hour weeks so I think that is the cause of my tiredness.

I cannot think why there is any delay other than checking the results to see whether the meds would be beneficial in my case.

Again, thanks for replying, I'm so glad you are well, it gives me hope.

teletonetapper profile image
teletonetapper in reply to

Hi again Gravy. I'm so pleased you feel more positive and, like you say, I also think you are tired due to your lengthy work shifts. It was agreed I be given the 12 week treatment prior to my fibroscan and ultrasound but I cannot honestly say all hospitals will be the same. My lifestyle was very healthy and I still went to the Gym prior, during, and after treatment. Hep C can be in your body for many years without any symptons. Mine, like yours, was only diagnosed in my early 60's. Stay positive, you will get through this and please do not think about "cremations" just creations and living your life. Take care and enjo your life. xx

in reply toteletonetapper

Hi teletonetapper

Thank you for that, I'm not morbid, I was just a little down and still processing. I spoke to my friend last night who phoned to say he has bought some new furniture, I told him I had Hep C, he replied "it's all about you" in his best dry humour... and we both laughed, which made me feel better. I spoke to my wife who is just as realistic as I am, she said "I don't know why you are worried about what may happen, nobody lives for ever just enjoy yourself while you can"

Your words echo what she said and it make a lot of sense.

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