newly diagnosed: Hi, new here and... - British Liver Trust

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newly diagnosed

Grannyblue profile image
31 Replies

Hi, new here and diagnosed in September. Only after my tummy seemed to be growing rapidly and I felt pretty rubbish. Have had umpteen blood tests and scans over the last couple of years, nothing ever mentioned about the liver. They say I am decompensated, had ascites but water tablets got rid of that, no varices yet. I do have portal hypertension gastrophy. They say life expectancy 6months to 5 years. Did drink to excess several years ago, but only once a week ish for about 7 years, then 2 or 3 times a year for the past 15 years and absolutely nothing for the last 12 months ( long before I knew about the problem, I just went right off booze, thank God, or I may not be here now. My problem is this has now taken over my life, it hangs over me daily, last thing before sleep and first thing on waking. I know thinking negative things won’t help, and my daughter gets upset because she wants me to stay positive, I watch and read positive stuff, I just can’t stop myself slipping back into thinking the worst. I have seen lots of comments on here but some from quite a while ago, how do you know if someone is still active on here? I used to love my holidays but now think I may never have another one, as I go alone as my sister passed this year, and I’m frightened of being away alone now. Too old for transplant. Sorry this is so long. How do/have people moved forward from this stage and obsession?

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Grannyblue
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31 Replies
Curlywurly80 profile image
Curlywurly80

I feel for you. Why can't they do anything for you though. Did they say why scans and blood tests showed no abnormalities. I don't think you were drinking to an excess, have they said that caused this. I hope you are ok and have found something to help x

Grannyblue profile image
Grannyblue in reply toCurlywurly80

They are talking about meds for the Phg, but I don’t have another appointment until end of March, they just said go back if the ascites comes back or I start vomiting blood. So I’m constantly watching for stuff. Yes they are saying caused by alcohol use years ago, it has laid dormant for years they think. But I had an us in March and no issues, then CT scan in September that showed cirrhosis, they say the us probably missed it, I’m sure they don’t believe me when I tell them I haven’t drank a thing in a year, but it really is the truth. Just feel like I don’t want to plan anything in case it’s ’not worth it’ have never been this way emotionally in my life, ever.

Curlywurly80 profile image
Curlywurly80 in reply toGrannyblue

Hope you get to see someone soon and get sorted. It's so hard when you have to wait months x

Sunnyskies33 profile image
Sunnyskies33

Some people who are decompensated become compensated. People can live a long life with compensated cirrhosis and even die of something else. Have they given you a healthy liver diet and other lifestyle recommendations? If not there is a lot of info on British Liver Trust and a nurse hotline. You might feel better if you call the hotline to chat while waiting for your next appointment. How are you feeling physically now? Sending good wishes.

Grannyblue profile image
Grannyblue in reply toSunnyskies33

They just told me to eat fruit and veg, very little advice at all really. Thanks I have been thinking about calling the nurse hotline, fed up of driving myself crazy.

AyrshireK profile image
AyrshireK in reply toGrannyblue

In order to help prevent further ascites you need to get plenty of protein into your diet too (this will also help prevent muscle wastage). You need carbs for fuel so don't just stick to fruit and veg. Also reduce your sodium intake.

Grannyblue profile image
Grannyblue in reply toSunnyskies33

also, physically I don’t feel too bad, it’s just I’m so afraid that my negativity is going to worsen things, so I’m constantly on the look out for every twinge or feeling of discomfort.

Millie09 profile image
Millie09

Hi 👋 and welcome to the forum , Please try not to worry i did exactly the same as you on first diagnosis 16 years ago , I will send you a private message later on today 😊.

Grannyblue profile image
Grannyblue in reply toMillie09

Thank you, would appreciate that ❤️

bagpuss7 profile image
bagpuss7

I'm afraid the definition of "excessive" drinking I'd not what we think it is. I watched Panorama on ARLD two Mondays ago. It was both shocking( not excessive drinking as defined by the average Joe had landed one lady in trouble) but maybe it might encourage you. Both featured ladies are alive and well years later. Catch on iplayer. It may help.This forum is full of people who have continued to live , and well, with full blown cirrhosis. Good luck xx

Grannyblue profile image
Grannyblue in reply tobagpuss7

Thank you ❤️

Breakfastbabe profile image
Breakfastbabe

My husband is decompensated and has ascites with bi-monthly drains. Also too old for a transplant. He was diagnosed with compensated cirrhosis 5 years ago but carried on drinking up until 18 months ago when he became decompensated. We too were worried about the future. The hospital wouldn't commit to a prognosis for alcohol related cirrhosis as they said once the patient stops drinking even a very damaged liver can stabilise in some people. The thing is anxiety can also affect our health badly so we have to overcome this somehow. My cousin's alcoholic husband lived 15 years and passed away from something unrelated so we focused on this. We live each day as it comes and although we still find it hard to plan long term, we enjoy the spontaneity of each nice thing we decide to do be it a coffee with a view or a trip to the theatre or a little break away. Your diagnosis is not a death sentence so although I know it is hard not to dwell on it, try and stay positive and as healthy as you can and live for the day. I wish you all the best for the future.

Grannyblue profile image
Grannyblue in reply toBreakfastbabe

Thank you, yes totally agree with the anxiety, my mum didn’t have liver problems, but did have health conditions, and she dwelled on them all the time, I always said she thought herself into dying earlier than she needed to, and I don’t want to do the same thing,

Cascade35 profile image
Cascade35

I have a different diagnosis to you but can relate to how you are feeling. It is so hard to stay positive when you feel you’ve played your part in doing what Drs and Specialists have asked, yet it’s not improving. Feeling despondent and low, lack of motivation and feeling overwhelmed is daily for many of us. I’m so sorry you are having a difficult time. I’d ring appointments and try and get your appointment brought forward. Ask for even a last minute cancellation, anything, as you need answers and advice

Grannyblue profile image
Grannyblue in reply toCascade35

I am already down for any cancellations, I did pay to see a private specialist 2 weeks ago though, it was him who gave the 6months to 5 years, and said fruit and veg, also he mentioned the meds for phg, but I’m not sure about those (beta blockers) as I was told some time ago I couldn’t have them as I am prone to low heart rate, minefield, it really is.

Grassroots112 profile image
Grassroots112 in reply toGrannyblue

Hi, I’m sorry you are going through what you are experiencing right now, it’s natural to feel scared and overwhelmed when your health is at stake and I wish you well going forward and that you can overcome this which you can. Remaining booze free for 12 months for example is amazing and shows great will power, desire and determination so congrats on that, keep it up.

Whoever told you that you could have 6 months to 5 years to live, however, and to just eat fruit and veg is a fraud and it’s no coincidence that this someone did so on the end of a private scan which I assume you had to pay for.

These people are mostly and never likely ever to be liver experts much less experts on advanced liver disease, alcohol related or not and diet and nutrition. I hazard a guess this person’s knowledge comes from Google or textbooks, most of which are false, inaccurate, outdated and simply lies when it comes to information provided from and within.

Listen and learn from the experts, namely a hepatology or a gastronomic doctor, and of course real experts who come in the form of actual real people with liver disease and cirrhosis who live with this daily, weekly, monthly, yearly and know the ins and outs of their disease and what’s needed to stay fit, well, healthy and above all else alive.

Such people can be found on here sadly, I say sadly because they are only on here as people with liver disease which no one deserves to have or get. Thankfully though they do come on here and share their amazing stories, lots of which are huge success stories, offer their invaluable help, advice, knowledge and kindness. People have been known to live long and fruitful healthy lives with cirrhosis, and many will die with cirrhosis not from it.

People have been known to have been at death’s door with all kinds of liver disease symptoms and complications and given x amount of time to live, only to turn things around where such talk of 6 months to 5 years or liver transplants are nonsense.

Basically don’t give in, don’t give up, trust your doctors, the real ones, not the paid for private ones, you have a daughter and that child needs you, you’ve already made a heck of a start by being 12 months alcohol free before all of this. Don’t Google, and if you do look up medical journals and research papers on liver disease and cirrhosis, DO research diet and nutrition and food because I’ve learned that’s really the key to good health. What you put into your body and what you don’t.

Whatever stage you’re at with your own liver disease, you can become compensated and your liver can function normally and even remodel itself, you can become the fittest and healthiest version of yourself even with a diagnosis for which again I’m sorry you’re are having to experience, but I’m certain you can live a long and good life yet still, never mind a poxy 6 months to 5 years you’ve been WRONGLY told. There are people on here who were hearing the same sh!t 20 years ago and are still here.

Be one of those people, good luck and take care, all the best.

Grannyblue profile image
Grannyblue in reply toGrassroots112

thank you, that’s a lovely, positive reply ❤️

BritishLiverTrust12 profile image
BritishLiverTrust12ModeratorBritish Liver Trust

Hi Grannyblue,

Welcome to the forum and we are sorry to hear of your situation.

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is

open Monday 9am to 3pm and Tuesday to Friday 9am to 4pm on 0800 652 7330

It is important for patients with decompensated cirrhosis to have the opportunity to talk about the impact of their condition, and to think about their wishes for the future.

This information will help you talk to your hepatology team, GP, relatives and carers about how you would like your future care to progress, and encourage you to start those conversations early, so you can make your preferred care options clear.

All the best,

British Liver Trust

Grannyblue profile image
Grannyblue in reply toBritishLiverTrust12

Thank you for this, I may have picked it up wrong, but it sounds a bit like ‘end of life’ planning, that although I know it’s inevitable for every person at some point, it’s the very thing I’m trying not to focus on right now. For many years my daughter has known my wishes for when that time comes, I just don’t feel it will help me to revisit it right now. Again apologies if I’ve completely got the wrong end of the stick.

Etymolog profile image
Etymolog in reply toGrannyblue

Hi

I’m sorry you have these thoughts and feelings but if you can get in touch with your consultant and his liver team . They will know all of your information. The fact that you don’t drink any more and that your diuretic has worked and that you feel well are all good signs . Katie is so right you need to have a full healthy diet with lots of protein and low sodium which can be difficult. My new consultant never has put a life expectancy on me as he says nobody knows what will happen. He said even he could get something tomorrow and then that could be difficult for him . There are lots of stories on here where people have been in between de compensation and compensated . And that changes everything. I know of someone now who is now compensated and looks for and well and she was diagnosed 21 years ago. Try to be strong it will get easier and you’ll hopefully try to put your diagnosis back in your mind so that you can concentrate on the life you have today . Obviously keep an eye on everything go to your appointment but once your done concentrate on the here and now.

I’m not in anyway medically trained this is just from my journey and experience.

Take care x

Readlots profile image
Readlots

Hi, my Mum was told she had 2 years with an autoimmune liver disease; she lived 20. Livers are notoriously unpredictable so most doctors won’t give a prognosis.

You’ve lost your sister and received a new diagnosis as well as feeling physically ill. It’s not surprising you feel low. Be kind to yourself and allow yourself to grieve.

Talk to your GP about how you are feeling. You may be able to take something and or get some counselling to help you navigate the new situation.

Lots of people think palliative care / end of life planning / hospice is admitting defeat and being negative. My experience is hospice support with parents was the opposite. It was about getting the most out of life, being able to do the things you want to do and being pampered.

Do call the helpline the nurses are brilliant. Sometimes you need to talk about things to be able to process them and move on.

Grannyblue profile image
Grannyblue in reply toReadlots

Thank you ❤️

Kingbilly3 profile image
Kingbilly3

good morning, I no how you feel, I took bad last march also decompensated with ascites I to all ways kept fearing the worst is going to happen, as time went on I started to feel better and to be honest I don’t really think about it now, I kept off drink like asked and most days I am fine, as for holidays I just booked to go alone to Tenerife in march! Av not been away alone before and if anything bad happens it happens, we can’t just live with what ifs if you no what I mean, good luck stay strong and try not to over think

Grannyblue profile image
Grannyblue in reply toKingbilly3

Thank you! You’re right in what you say, have a fab holiday ❤️❤️

2022minks profile image
2022minks

⁴There's lots of great advice on here and although a hard diagnosis to come to terms with. Don't put off doing stuff because of what ifs, you have a life to live so try and get on with living, make plans and if you feel stuck I would really recommend getting some counselling that can help you in coming to terms with your condition but also helps you in living a life doing everything you want to do. You have had ascites, and water tablets have helped, keeping to a healthy lifestyle with food and exercise helps to strengthen your body, doctors can't predict when you might have any bleeds, but in all knowledge will help you to know if any of these things ever happened that there are ways that can help avoid any serious events. Six monthly scans and blood tests will help your consultants to monitor your livers health, so if you are feeling well live life as well as you can 😘

Grannyblue profile image
Grannyblue in reply to2022minks

Thank you ❤️

Jans1953 profile image
Jans1953

Hi. I was diagnosed with NASH in 2002. They said it was being overweight (15 stone +) and a sedentary lifestyle since I had minimal alcohol intake since 1988 when I stopped drinking alcohol as I didn't really like the taste.It was found on routine blood testing when I complained of always being tired. This was followed by a scan and liver biopsy to confirm. But I had no real problems for 16 years when I developed fluid retention and went into decompensated liver disease. Saw a hematologist privately in Bham at this point who prescribed medication and then sent me to the Liver clinic at the QE. Once sorted I had minimal problems really except some HE and generalised tiredness. I saw a specialist dietician who advised on what I should be eating. And believe me some of those things were quite a surprise. I was referred for transplant in 2018 at the age of almost 65 and received a transplant quite quickly after referral because of problems in my portal vein.

I guess what I'm saying is never give up. People live for many years with liver disease as long as you change your lifestyle as advised. See the experts in the field. Dieticians, hematologist. Try to get referred to liver clinics if possible at hospitals who do transplants.

I wish you well. I am 6 years post transplant now but 22 years since my diagnosis. X

Grannyblue profile image
Grannyblue in reply toJans1953

Thank you ❤️ I am going to try for a dietician

LuckyStar37 profile image
LuckyStar37

Daughter of a mum in your exact position here, she has just had her liver transplant and I still have her here which was a huge relief. I can’t tell you how to not think of it, but I can say, everything your team tell you to do, follow to the letter. I really hope you get through this, and I am certain it’s the reason my mum did. She had varices but thankfully after the first banding they didn’t come back. Fight fight fight, even though you won’t feel like it. Livers can surprise us. I am sorry you are not eligible for transplant. That’s tough :(

SlothGoat profile image
SlothGoat

Hi Grannyblue. I’m sorry that you are dealing with all of this. I hope it brings you some comfort to know you are not alone. I’m 24yrs old and even though I have never been considered lucky in life, I somehow found a way to win a fatty liver. I can relate to the feeling of it always being on your mind and reading through some of these older posts and wondering where they are today. I hope knowing that you now have someone who is thinking about you will help you feel less alone. I wish you the best and will always be here to talk, since it helps make me feel not alone either.

Grannyblue profile image
Grannyblue in reply toSlothGoat

thank you ❤️

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