Newly diagnosed with hep c advise please - Hepatitis C Trust

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Newly diagnosed with hep c advise please

Rachida profile image
40 Replies

Newly diagnosed hep c advise please

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Rachida profile image
Rachida
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40 Replies
navigatinglife profile image
navigatinglife

Hi & welcome to the forum 🙋 Now diagnosed things will move along pretty quickly as the NHS are trying to eliminate this virus. Hep c trust org online has latest information & everything you need to know. Until you receive treatment look after youself, try not to worry. Eat well & avoid alcohol etc and go to your appointments. You will be monitored and hopefully soon will be rid of the virus 😁Keeping as stress free as possible is good. A healthy diet and exercise 😉😍😍😍

Rachida profile image
Rachida

Thank you for your reply 1 i don’t know how long I had it for 2 can treatment get rid of it

navigatinglife profile image
navigatinglife in reply to Rachida

Yes it can. The drugs today have an almost 100% cure rate. The treatments start from an 8 week course, side effects are minimal and very bearable. Most people don't have any and are clear of the virus within 2 to 4 weeks although the course of treatment must be completed. 😍😍

Rachida profile image
Rachida in reply to navigatinglife

That’s good have you have it your self.

navigatinglife profile image
navigatinglife in reply to Rachida

Yes, diagnosed last September, don't know how or when. Had 8 week course but yet to be clear. I will take it again if I am not clear. 😍😍

in reply to navigatinglife

Have you finished ? Are you clear of the virus ?

in reply to Rachida

Hello I found out I had the virus when I was pregnant with me son who is now 12 I don’t no how long I had it befor detected I started treatment had bloods done at week 2 and was told week 4 hep c was not detected so yes the treatment is very affective I had type 1 or a as some people like to call it once I had my scan I started treatment around 3 week after so like navigatinglife said they do move quite quick do you no whot type you have and whot treatment you you be taking

Mizzkent profile image
Mizzkent

Hi Rachida welcome 😊 first of all try not to worry! Hard I know and if you can try and stay away from google it’s not always helpful.All what Nav has already said 👌

And yes the new treatments out can get rid of it😊 I have lived with this almost 16 years and I’m 2 weeks away from completing treatment. The virus was almost wiped out after just 2 weeks! Amazing!! I know when I go back in 2 weeks I’ll get the all clear.😊

We are always here if you ever need to talk best wishes Cathy. Xxx

Rachida profile image
Rachida

Thank you for your reply I’m worried about how far my liver is damaged . And can be repaired

Mizzkent profile image
Mizzkent in reply to Rachida

I was too because after I found out I drank and partied a lot for a lot of years. Drinking to the excess my fibro scan was normal and none cirrhotic. I honestly don’t now how I managed that! I should make a full recovery I’m so very lucky.

The Liver is an amazing organ and can repair it’s self from a lot of things if you look after it I’ve hardly drank much over the last 5 years so that’s probably helped a lot.

I was convinced mine was going to be bad so I was shocked I had no scarring.

Honestly try not to worry I worked myself up to a Right state and it was all pointless worrying.

The good news is now you no about it and can be treated.You will have all of your tests and hopefully be offered treatment. If you are then defiantly take it! I was treated within 2 months of having the tests.😊

Speed of treatment seems to depend on the area you are living in but that will be changing and hopefully soon it will be available for everyone who needs it🙌 xxx

in reply to Rachida

I had it 12 year plus and my liver was fine no damage no scar tissue but I never drink so could be why my liver was in such good health to say I had the virus for years anyway

Sillysausage234 profile image
Sillysausage234

🙋🏻‍♂️Hi rachida,don’t waste energy on where you got it and how you got it ,just go to your appointments and hopefully youlle get offered treatment soon ,good luck.

Dandelion_1 profile image
Dandelion_1

Hi

Sorry to hear about your diagnosis. Try not to worry too much, you have been diagnosed at the best time in the history of the virus, there are excellent treatments available.

If you got the diagnosis from your GP, ask them to send you for a fibroscan of your liver so you can get an idea of any damage and ask for a referral to a Hep C specialist. The liver repairs itself continuously, even if under attack from this virus so this is the ideal opportunity to look after it. Avoid putting it under any more strain by cutting out the things that make it work harder, mainly alcohol, drugs and fatty foods.

As Nav says, eat good things with plenty of fluids and keep living well. Even when you're feeling low, keep moving, do things you like and surround yourelf with good people and good advice.

Talk to the Hep C Trust helpline for simple, friendly advice on all aspects of the virus and health which I found so helpful when I was first diagnosed and throughout the process that led to eventual treatment via a clinical 18 months or so ago. Like MizzKent, I was clear of the virus quickly into the 12 week course and have remained clear after having it for over 40 years.

Keep asking us questions here too!

Rachida profile image
Rachida in reply to Dandelion_1

Di you have any liver damage with it if so . Did the treatment repaired it I m so sorry being so negative at the moment I was diagnosed yesterday

Sillysausage234 profile image
Sillysausage234 in reply to Rachida

Have you been a heavy drinker

Rachida profile image
Rachida in reply to Sillysausage234

No

Sillysausage234 profile image
Sillysausage234 in reply to Rachida

No reason to worry too much about permanent liver damage then,

in reply to Rachida

I had the virus 11 year and my scan came back all

Good no scard Tissue no damage at all

Rachida profile image
Rachida in reply to

That very good

in reply to Rachida

Good luck to you I hope you get started on treatment very soon and hope you clear the virus I had no one to talk to as no body knew about me having it this group helped me a lot so if you need to talk they always someone on here who would gladly have a chat with you take grate care

Sillysausage234 profile image
Sillysausage234 in reply to

Hi shell,are you feeling any better now after treatment?

in reply to Sillysausage234

Hi Alan yes I feel grate the pains have gone the tierdnes as gone i back to my old self now thank you for asking

Trudgo profile image
Trudgo in reply to Rachida

Hello Rachida, I remember in 1991 when they told me I had the virus. I was scared. Uncertain of my future. I can imagine you're feeling a lot of emotions right about now. I don't think you are being negative at all. I think you have questions that are valid. And, you just being diagnosed are trying to process it all. This as I know can be very overwhelming. I want to tell you the new treatments are truly medical breakthroughs. I took 12 weeks of Harvoni. I didn't get sick. Did quite well. I don't know if your doctor wants to have a biopsy of your liver done. Mine did. He said a biopsy would be the only way to see what or if the liver was damaged. Yes, they can scan. However my doctor was thorough and I'm grateful to have had him. . I had 2 biopsies done from the time I was diagnosed in 1991 until I took treatment in 2015. I was a social drinker prior to my diagnosis and quit drinking completely after my diagnosis. I don't know how long the virus was in my body. I showed no symptoms. Other than fatigue. I do have scaring and fibrosis, early cirrhosis. I do have liver scans every 6 months and blood work. The Harvoni has not reversed the damage done . But knowing the virus can't continue to damage my liver is fine with me!

I'm not sure about fibro scans as I haven't been offered that choice I hear they are very good instead of a biopsy . Definitely worth checking out. Less invasive for sure!

Wishing you all the best!

Rachida profile image
Rachida in reply to Trudgo

Thank you trudgo

Rachida profile image
Rachida in reply to Dandelion_1

I’m worried if it

Progressed to liver cancer yet

Dandelion_1 profile image
Dandelion_1

Hi Rachida

Before the fibroscan result I was imagining a rotting organ in my body, withering away. After the fibroscan result (which is instant by the way) I was told I had mild liver damage, not much more than anyone of my age would have. So, try not to worry. I changed my diet after diagnosis and stopped my nightly glass of wine and I think my liver was in better shape than for a long time, even before treatment. It is a resilient organ if not overloaded and can repair itself. See my last post re this and going to your GP asap.

You will be in a some sort of shock at the moment as this is a hard diagnosis to receive. Please ring the Hep C helpline tomorrow to talk it through with no judgement and in confidence. 020 7089 6221 10.30 - 16.30 Mon – Fri

Hope this helps a bit ... keep asking questions!

Phillipaussie profile image
Phillipaussie

hi I'm Phil, may I ask the origins of your name, it's one I Have never heard and I'm curious, welcome and thanks for having the courage to introduce yourself. This site is brilliant beats Facebook and Google, you going to be alright in this group mark my words.

Rachida profile image
Rachida in reply to Phillipaussie

Born in Algeria

Jea123 profile image
Jea123

Hi Rachida, I have just been diagnosed and know that feeling of shock. I am just starting this journey too. Hope that we can share experiences.

Rachida profile image
Rachida in reply to Jea123

Yes please

Rachida profile image
Rachida in reply to Rachida

HaveHow long it takes to see a specialist

Trudgo profile image
Trudgo in reply to Rachida

Your primary doctor should be able to get you in quickly.

Rachida profile image
Rachida in reply to Trudgo

He referred me on 5/2 but I called hospital today they have not received a referral yet

Jea123 profile image
Jea123

Most difficult part was telling my kids that they should have a blood test for hep c. They have been tested neg. And been really supportive.

in reply to Jea123

I had to get my sons tested when they was born one tested pos for anti body’s but that cleared up and my other son tested neg from day one I only found out that I had it when I was around 6 month pregnant

Hello do you no whot type hep c you got I was Type 1

Rachida profile image
Rachida in reply to

No idea I have not had bloods done yet except tested positively for hep’c

in reply to Rachida

Ok I had it and have finished treatment I had bloods took on week 2 then found out hep c was not detected so treatment is very affective i was on a 12 week course of treatment been finished since the 29th of December

Rachida profile image
Rachida in reply to

That brilliant news

Hi are you clear of the virus now