Cirrosis: Hi everyone. After a short... - British Liver Trust

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Cirrosis

Ruby1960 profile image

Hi everyone. After a short illness last year I had lots of blood tests and was diagnosed with Hepatitis C. This came as a massive shock but worse was to follow when I was told that as a result of the virus I had developed cirrhosis! I have now been treated successfully for the virus but obviously nothing can be done to reverse the damage it has caused. As it was almost certainly caused by receiving infected blood from a transfusion in 1986 I have been given £70,000 from EIBBS and now receive £30,000 annually as support. I have tried to remain positive since I was diagnosed but receiving the money has somehow made me feel very down. I think it has just hit me how serious this condition is, if that makes any sense! Family members, who mean well, telling me to enjoy myself, take early retirement etc. I used to dream of retiring and travelling but am afraid to do that now. I feel I can’t make any plans for the future. I realise that there are people a lot worse off than me but can’t shake off this feeling of gloom. I apologise if I sound like I’m just feeling sorry for myself.

23 Replies

Sending virtual hug, I truly know how you must feel, I too struggle to focus on what were my plans for retirement, traveling, seeing beautiful places, sometimes it's really hard to stay positive, family and friends mean well but the enormity of this illness can feel so overwhelming, I'm not sure I know the answer to people saying live your life and go and enjoy yourself, maybe in time it will come, once as you say put the enormity of this disease in perspective and maybe we have to learn all over again of how to enjoy life , I do know one thing it is important to enjoy this life whilst we are able to, Take care of yourself x .

Worrysome1 profile image
Worrysome1 in reply to Tia2021

Big hug for you Tia, from what you say, you’re doing much better now. Hope there’s many happy days ahead for you. You’re always glad for others when they have good news whilst having it tough yourself. Xxxxxxx

Tia2021 profile image
Tia2021 in reply to Worrysome1

Thank you, it means such alot to have everyone's support, you take care xx

Glad you finally got the pay out because the last time you wrote you said it had been declined. As I recall you don't seem to have been hugely symptomatic from the cirrhosis to date, long may that continue however I would make sure you are having all the appropriate monitoring (6 monthly ultrasound scan, 6 monthly bloods including AFP) and I wouldn't be shy about seeking referral to a transplant unit if you become symptomatic.

Whilst you are fit then potentially do investigate the possibility of retirement if it's possible, the annual payment should more than happily look after you and allow you to really enjoy life to the max that your condition allows. Make the most of your life regardless of the condition.

All the best, Katie

Ruby1960 profile image
Ruby1960 in reply to AyrshireK

Thanks Katie. I have taken the plunge and retired. Didn’t need much persuading to be honest. The support I now receive is almost as much as I was earning, so a no brainier really. I fully intend to make the most of life while I have no symptoms. I do get a lot of muscle cramps and general aches and pains but maybe that’s just age. Well done to your hubby, he’s certainly making the best of life.

Hi there,

Sorry to hear about your diagnosis, but congrats on receiving compensation. Couple of bright sides to consider- if you have no symptoms and are fully compensated, you may feel perfectly fine for many years to come, especially if you pamper your liver. Also, HepC cirrhosis, especially when caught early, has some of the best outcomes of all cirrhosis types, to the extent that a substantial number of cirrhosis cases where HepC is treated before advanced cirrhosis and portal hypertension set in can actually reverse. Not saying that will hapen for you, but you have a pretty good chance (again, assuming you were caught early) of being stable for a long time and possibly even reversing some scarring, which was once thought impossible in cirrhosis.

A lot of interesting research out there on the topic of cirrhosis reversal, and especially in HepC. Check it out if you're curious.

As far as what to do with your time and money, well, probably no one can think of better uses than you can. There probably is no reason why you couldn't follow your dreams now (assuming docs sign off, of course). Best wishes to you.

Ruby1960 profile image
Ruby1960 in reply to Str8jacket

Thank you, that is interesting. Nobody has explained what stage I’m at, in fact all they have said is that I’ve got cirrhosis! Got an appointment with the consultant next week as a follow up from all the tests, MRI, endoscopy etc.

Str8jacket profile image
Str8jacket in reply to Ruby1960

Not trying to sow false hopes, to be clear. Cirrhosis reversal seems to be a very long shot for anyone, but it at least has been observed somewhat regularly in early HepC cirrhosis. If you have no symptoms/portal hypertension, it may be a possibility. But in any case, you may very well have many good years ahead.

Have you read Ayrshire K’s stories? Very inspirational. They have lovely caravan holidays. All the best love. Xxxxx

AyrshireK profile image
AyrshireK in reply to Worrysome1

Indeed we are just home after 25 nights away in our caravan - life doesn't end because of cirrhosis. OK hubby is 9 years into his journey and has to accept that some days are worse than others but life is for living.

We just come back after a great holiday to Teesdale, the Yorkshire Dales and Moffat in Dumfries and Galloway.

Walking most days - 108 miles total for the holidays including Kisdon Hill (Swaledale), the Teesdale portion of the Pennine Way, Great Shunner Fell in Wensleydale, a 12 mile walk to Hannah Hauxwell's Meadow in Teesdale, Buckden to Yockenthwaite in Wharfedale & return (twice), Grassington to Conistone Pie/Dib & return and round the Devils Beef Tub in Galloway (nearly 2000 ft of climbing in a 9 mile walk)- some of which were done in scorchio weather.

Hubby had to have a couple of days bed rest during the holiday and not every day was full on but he's loved every minute. I even managed a swim in the River Swale, in Semer Water and in St. Mary's Loch near Moffat.

It was brilliant to get away after shielding and keeping safe since last March.

We don't have much money, living on a small inheritance and PIP & Carer's Allowance at the moment - my work has pretty gone out of the window whilst covid is around.

Live your life to the full.

Katie

Worrysome1 profile image
Worrysome1 in reply to AyrshireK

You should write a book. I’m glad you’ve had a great time. You both deserve it. I mean it about the book! Xxxxxxxx

Annalucia profile image
Annalucia in reply to AyrshireK

Hello Katie,

does liver cirrhosis always get worse? I've read several things about that, sometimes contradictory.

AyrshireK profile image
AyrshireK in reply to Annalucia

It depends on the cause of the liver illness, you can potentially stop or slow any progress by tackling whatever the underlying cause was. If the liver is well compensated it's possible to go on for years even with cirrhosis (and even reverse damage to some degree) but it's a case of dealing with any symptoms arising due to it and obviously to protect against infection etc. which can cause the liver to decompensate.

I couldn't say for sure whether progress is inevitable or not. Hubbies consultant has patients on his books who have had a cirrhosis diagnosis of 20+ years & hubby has gone from decompensated in 2012 to stable (with some symptoms) now. He even spent 10 months on transplant list in 2014/15. I think a lot of it is mentally adjusting to the 'new you' and having the mindset that every good day is for living.

Katie

Yes Ayrshire Ks stories are inspirational. Big hug xxxxxx

Do you not fancy a caravan Ruby? Xxxxx

Ruby1960 profile image
Ruby1960 in reply to Worrysome1

Haha. My husband spent 23 years in the army and he’s had enough of “living in holes in the ground” as he puts it! Seriously though, we have considered it now we are both retired but we have 2 border collies and I think it would be pretty manic travelling around the country with them!

Worrysome1 profile image
Worrysome1 in reply to Ruby1960

Static caravans are gorgeous, home from home. They have great social life too. Must admit I’m not really into our tourer that much, we’re both a bit fat and not enough room! Xxxxxxx

What is the state of medical opinion on the reversibility of cirrhosis? It depends on whom you ask. But for doctors, the general "rule" or "accepted medical opinion" used to be that cirrhosis is an irreversible condition, and that once you have it, the only thing you can hope for is to slow it down before it progresses, inevitably, to death.

That view started to change in the 1980s when doctors studying pateints who had been successfully treated for Hepatitis C, began to examine histological slides from biopsies of the patients and discovered, to their surprise, that some of the slides of their livers showed a reversal of the condition. In certain patients there had been a "regression" of the condition from F4 (which means severely fibrotic which has progressed to a scar, a condition we know as "cirrhosis) to F3, which means the collagen tissues are there, but have not so interwtined that they have become a scar or F2, or even F0 (no fibrosis, normal liver).

How can scar tissues just "disappear"?

Scientists have begun to understand, one study at a time, that when it comes to fibrotic tissue in the liver, things are just somehow different in some cases. Part of the reason may be that the liver itself is special. The liver has a special property, pretty unique among organs, to actually regenerate itself. People who have had up to 70% of their livers cut away in surgery have been able to grow back a complete functioning liver. Pretty strange and science fiction-like.

The upshot of the studies on cases where cirrhosis has been regressed to an earlier, less serious fibrosis or have "disappeared" all happen after the condition which caused the cirrhosis has been treated successfully.

Then, it's up to you and your body. You have to avoid further damaging your liver to give your body a chance to start the healing, maybe even regressing or reversing your condition. Coffee helps. Studies have shown that coffee (3 to 4 cups) helps to regress the fibrosis. In fact, one of the administrators of this forum, NASH2 (Wayne), has succeeded in regressing his cirrhosis from F4 to a less serious degree (F2, If I remember correctly) by eating right and drinking coffee. So, there are things you can do.

I think it also helps to stay as positive as possible. Plus, I think it helps to exercise.

Here are a couple of links to back up what I've said about the regression or reversal of cirrhosis in some cases. This forum is filled with people with boat loads of experience with cirrhosis, so take heart from what others have already lived through.

Excerpt from a recent review:onlinelibrary.wiley.com/doi...

"Due to advances in science and practice of hepatology and the ability to treat most common chronic liver diseases, the concept of cirrhosis has changed from being a form of static, irreversible entity to a dynamic and reversible diseases stage. A recently published American Association for study of Liver Diseases (AASLD) position paper suggested that we should ‘move beyond the simple characterisation of cirrhosis as a single stage and instead begin thinking of cirrhosis as a series of critical steps that, if left unchecked, culminate in hepatic decompensation’. According to the report, we had better defined chronic liver disease not only by pathological finding of late-stage fibrosis as a single entity called cirrhosis, but rather on the basis of histopathology, functional and clinical data to at least four stages as shown in the following table.This type of staging in chronic liver disease is necessary to be able to find and treat a subgroup of patients whose liver fibrosis or ‘cirrhosis’ is still reversible (Figure 1). "

Excerpt fom another review of other studies:ncbi.nlm.nih.gov/pmc/articl...

"In the past, liver cirrhosis was considered an irreversible phenomenon. However, many experimental data have provided evidence of the reversibility of liver fibrosis. Moreover, multiple clinical studies have also shown regression of fibrosis and reversal of cirrhosis on repeated biopsy samples. As various etiologies are associated with liver fibrosis via integrated signaling pathways, a comprehensive understanding of the pathobiology of hepatic fibrogenesis is critical for improving clinical outcomes. "

Hi Ruby, exactly the same thing happened to me but my blood transfusion was during childbirth in 1973. I did know I had Hep C back in 1992 after being told not give blood as I was a donor before that. I had a liver biopsy in 1995 and was told I had a mild form of Hep C and it would clear from my body naturally, no follow up was needed.In 2003 I developed symptoms whilst living in Spain. I suffered with fatigue and a rash that wouldn’t go away. After returning to UK and seeing my doctor and having tests, I to was told I still had Hep C and had developed Cirrhosis, I was shocked of course and had to go through 72 weeks of ribavirin and interferon, not nice as you probably know. I have learnt to live with the symptoms of occasional fatigue, achy joints etc.

I remain optimistic and ignore the fact I may get worse in the future. I just live my life as best I can and thank god I am able to do most of the things I love. Please don’t waste your days worrying about cirrhosis and the seriousness of the illness. There are any people walking around and don’t even know they have it. I live a clean and healthy life, I don’t flood my body with toxins and am happy to be alive. Most days I feel great. My advice to you is to keep positive.

Thank you for your positive reply. There is so much doom & gloom regarding this disease that it’s difficult to stay positive. I too had the transfusion after childbirth, but later than you, in 1986. I think what I find most annoying is the fact that I had 3 liver scans over a period of 10 years because of abnormal LFT results. I was diagnosed with slightly fatty liver and told to stop drinking! When I questioned why I was not tested for Hep C sooner I was told that I wasn’t classed as high risk. I am usually, like yourself, a very upbeat person but I let things get to me a little lately.

I understand how you feel and was equally annoyed because I had a liver biopsy in 1995 which would was specifically to gauge the state of my liver and Hep C status. If they would have treated it or kept me on the radar, it never would have got to the Cirrhosis stage and I would not have had to go through treatment and had varices banded etc. No one will ever take the blame for what has happened and there is no single individual accountable. I had to fight for compensation and all of my records from before 1992 has somehow disappeared. Please remember though this is about you and your life. I have learnt a lot over the years about the people involved, my diagnosis and outlook. I have come to realise no one will give you all the answers and there are varying opinions about your damage. I’ve been told I have stage 4 compensated and then I was at stage 6 Cirrhosis, my PKA score seems to change (this measures the density of your live and how damaged it is). You will get baffled with all these figures and won’t fully understand them. I know my liver will never be normal and the only thing I can do is live a good life - don’t drink and don’t smoke, don’t eat too much processed food, don’t take too many paracetamol or ibrufen and just common sense really and most of all STAY POSITIVE.

Wow. This is what happened to me. How many people have been cheated out of compensation because records “disappeared”? I managed to get proof of transfusion, but it wasn’t easy. I look forward to hearing the outcome of the inquiry into this scandal. I know it can’t change what has happened to us all but we deserve the compensation and the recognition that there was a cover up. Take care

I have made a witness statement for Infected Blood inquiry. I am pleased it is taking place and hope the outcome will give us some answers. As I said, unfortunately there are no individuals definitively accountable and most of the key people involved are no longer with us or are to elderly to give a credible account of what happened. We can only hope the outcome is of benefit to us all, however, whatever the outcome it is still up to the incumbent government to implement the changes and take responsibility and also admit fault for what has happened and the suffering that is still happening.

I live in hope and have promised myself not to be too disappointed if it turns out the way the Archer report or the Penrose inquiry concluded (nothing was concluded in either case and millions of pounds of the tax payers money was spent). I live my life as if I didn’t have anything wrong with me and won’t waste my time on waiting for the outcome of something that may or may not be. If something happens to benefit the victims then it will be a bonus but in the meantime I live my life and feel happy to be alive.

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