Recent Hep C diagnosis: I have been... - British Liver Trust

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Recent Hep C diagnosis

simonwilde42 profile image
14 Replies

I have been diagnosed with Hep c for 3 months now apparently its in my blood stream as well as my liver, Ive never been an IV drug user and think it was from a blood transfusion I had in the 1970s in Roma Italy.Im not being treated with medication yet as the only treatment offered by nice messes with my depression, and they say would put me in the psyc.hospital.How long will I live for without treatment with this illness ? Can anyone help me?

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simonwilde42
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14 Replies

your liver should be your priority or it will fail and you dont want that, its very unpleasant. have you had your liver checked out?

simonwilde42 profile image
simonwilde42 in reply to

Thanx for answering me ralph.

simonwilde42 profile image
simonwilde42

I have had it confirmed by hospital hep c infection, but because I suffer from depression the riboviron sorry for the spelling they wont offer me any I dont know what to do next ?

simonwilde42 profile image
simonwilde42

Also, how do I get my name on the transplant list in the uk.

in reply tosimonwilde42

hep-c can be cured. But have you been informed of any liver damage?

AyrshireK profile image
AyrshireK

Hi Simon, the only way onto the NHS liver transplant list is for you to be referred to one of the regional transplant centres. They would then have to thoroughly assess your liver condition and your general state of health - including I have to say some social and psychiatry type assessment. They look at your current diagnosis, the health of the liver or otherwise, any other health conditions and contraindications for transplant. They have to check that a transplant is necessary and that the potential recipient is fit enough to get through the transplant process.

Sadly a transplant does not remove Hep C, it only replaces the damaged liver, Hep C can and often does return even post transplant and both pre and post transplant treatment of the Hep C would be required. Your Hep C needs to be getting treated, regardless of impact on your mental health which can surely be dealt with.

Have you got someone who can go with you and support you at clinic appointments? This illness is something which can't be ignored and some moral support would help you greatly in getting the necessary treatment.

Wishing you all the best, Katie

kellys66 profile image
kellys66 in reply toAyrshireK

Hi Katie I knew I had liver cirrhosis, but I was handed my endoscopy results today and read (ASA grading: patient has mild systemic disease ,hepatitis C cirrhosis, and chronic liver disease, I was shocked and still am

pear-shaped profile image
pear-shaped

Hello Simon... You should have had a care plan drawn up by the Viral Hep C team at your hospital. If not - then you need to go back to your GP. Being diagnosed should begin the ball rolling to get all the other tests done and looked into. They would/should've given you a letter/report of what they found and how they plan to treat it... If you don't have any of these then - again - go back to your GP and ask them to clarify it all as they would have been given the report. Also there is the hepctrust.org.uk/ which has lots of advice and support.

Best of luck

Pear.

ash53 profile image
ash53

Hi I was infected with hep c not a drug user either not that makes an ounce of difference . I suffer from depression also , the specialist nurses just keep a close eye on your mental state and also being the lucky buggers that we are to stay in thus country where they bend over backwards to help you , you will also be offered counselling if necessary . Hep c virus doesn't just stay in the liver obviously it's got to be in your blood . Maybe I misread what you were saying , probably best ask a specialist nurse at your next visit for information as it can be a bit overwhelming . You also asked about life span , a good diet no alcohol or drugs and the virus will only proceed slowly if you drink alcohol that will lead to problems . I've just finished treatment 48 weeks and it was a bit rough and I'm still a bit rough but I don't have the virus now x good luck x

Tatjana profile image
Tatjana

Hi simonwilde42. How long you can live with this illness. My answer is at least 42 years. How do I know. That is what I am doing. Best wishes.

simonwilde42 profile image
simonwilde42 in reply toTatjana

All of you have been so bloody helpful, thankyou so very much.Its comfortable knowing there is this much support out there.The nhs has been slow to help but hopefully things will change soon.

Bolly profile image
Bolly

Unfortunately whoever told you about the treatment for Hep C not being compatible with depression is right, as the meds mess with your mental wellbeing while clearing the virus. It might be worth going back to your doctor and asking to be put forward for a clinical trial, there may be some trials going on that dont use Riba or interferon.

hope4tomorrow profile image
hope4tomorrow

There are 3 new treatments available ..Solvaldi /ribavarin and a new on called Harvoni and another called the Vikeira/Holkeira pak ..this may be the wrong names in the UK .I am an ex- pat in Canada and they have just been approved for funding here, the USA and I think India and Australia Not sure what the status is in Britain ..They are so much better than the old treatments ..If you have had Hep c since the 70's like I have it is riddled thru your body ..Do you have sore joints ,muscle aches and pains itchiness, pain in left and /or right side upset stomachs,fatigue and very bad blood counts when you have the blood tests done ..you need to get treatment as soon as you can I have reached Liver failure and it is no fun I assure you . start googling Hep C ..there are 6 different types/strains and you need to get all this sorted out ..I hope you get some help asap .Please

art4949 profile image
art4949

Sorry to hear you have been diagnosed with HCV. You need to have a Fibroscan and full Liver Function Test to determine how much damage has been done to your liver especially as you have lived with it so long without knowing. The first thing to do is stop drinking. And look at your lifestyle/diet. There is loads of information regarding this on Hepatitis C Trust website, just google it. Also, you do not mention which genotype you are, such as 1a/b, 2, 3......this is important factor when your liver specialist decides which treatment is best for you. I know interferon causes depression in many HCV patients..when used for treatment. However, there are new treatments for HCV that are interferon/ribovarin free on the market which have few side effects and clear the virus even with advance liver damage. Like you, I was infected with HCV back in 1977 through blood transfusion...I do not drink, smoke and never a drug user, legal or not.. (not even paracetamol). How long will you live?...depends on your liver's condition, your lifestyle and when you receive treatment...many of us have been living a long time with condition and just want the cure! Come on NHS! The hepatitis virus lives in your blood stream. The body's immune system attack the liver cells where the virus replicate the hepatocytes thereby causing scar tissue(fibrosis). Fatigue and brain fog are some of the most common symptoms of HCV because the virus does circulate the body . Good Luck.

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