I'm so scared....could someone please help?

[puddy68]

Hi. I'm so glad I stumbled on this site and I'm hoping that someone could be kind enough to reach out to me? I'm so very, very scared, and it's all my own fault. I have suffered from an anxiety disorder for 15 - 20 years and used wine to cope....and lots of it. I was diagnosed with compensated cirrhosis in May 2022, Class A Pugh score. I saw my specialist again last week [after 2 years - anxiety disorder stopped me from follow up visits before last week. I'm so STUPID]. Was told to stop drinking in May 2022, but stupidly kept drinking, though not at the same rate. Now have Class B Pugh score, and have entered into the decompensated state of cirrhosis now and am absolutely terrified. Not had a drink for 2 weeks, joined gym today, and am researching the best diet for cirrhosis. I'm so scared. I have portal hypertension and an enlarged spleen. T Bil of 61, yet no signs of jaundice. ALP is 158, GGT is 183. No signs of edema. Low platelet count. My specialist confused me - told me I had 5 years to live, but at the same appointment also said that if I stopped drinking, exercised, all the good stuff that I had a good chance of stopping further damage and could even revert to compensated again. I'm very confused, anxiety is rampant and I'm petrified. I don't want to die and leave my beautiful husband and son because of my stupidity. Could someone please help? Thank you so much.

[SoftSoul_]

Hello I'm so sorry for you distress and that it has come to this, I understand about drinking wine from anxiety stress, so please don't beat yourself up too much on that believe me I know many that are the same, I came back on here to give myself a reminder of the damage of alcohol as 4 years ago I had one high liver count I stopped drinking for 3 months luckily I was ok had regular checks, your post has been the wake up call I needed, it's so easy to bury our head in the sand thinking we are invincible and our health will be ok, if we detox for a while or cut down, all I can say to help health wise is that I have read that people do live longer with cirrhosis, and your not that old so please don't loose hope and faith, I am sure that with your new health regime you will get into a better health state, please may I ask how much were you drinking per night, I totally understand if you rather not say, there's a forum on HU called anxiety and depression you may find support on there for your anxiety there are lots of lovely people on there, myself I shall start my swimming again, I'm sure more will reply in similar positions to you on here, until then perhaps read through some post and reply to them and get to know others similar, you certainly need lots of support, sending a hug and heeling to you, and well done for your new health regime, 🤗🤍

[puddy68 in reply to SoftSoul_]

Thank you so much for your reply, SoftSoul. I really appreciate it. I was drinking 2 litres [ 2 - 3 bottles] of wine a night, around 5 times a week. I really admire you for your regular check ups, instead of avoiding them as I did. Good luck with your swimming, and thank you so much for your message of support. God Bless.

[SoftSoul_ in reply to puddy68]

Hello thank you, at that time it was lockdown and I had stupidly stocked up with wine boxes, so was far more than my usual, luckily I don't drink as much as you was but I will still ask doctor for a check the past month I have drank more as had more stress anxiety than usual, I do suffer some health anxiety so that has usually kept me in line so to speak, I wish you well with your new exercise and health regime, I'm here if you need to chat, take the best care of yourself as I will me 🤍

[SoftSoul_ in reply to puddy68]

I would like to add chamomile tea is a good relaxant it does help sleep too I certainly found it helpful you can add the tea bag to decaf ordinary tea and is just like drinking tea but you get used to the taste, please try it 🤍

[BritishLiverTrust8 Moderator British Liver Trust in reply to SoftSoul_]

Dear Softsoul_

We encourage anyone taking or considering starting a supplement or herbal remedy to discuss this with a health care professional or registered dietitian. For more information on this subject please visit the following page on our website:

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

[InsensateState]

Hi Puddy I'm sorry to hear that you're feeling anxious but hey congratulations on stopping drinking for a couple of weeks - that's big! Alcohol is definitely a big one to stay away from but also staying away from saturated fats such as meat fats - try to eat more white meats than red. Cut down on salt and processed foods as they're high in salt and sugar. Up your intake of fruits and vegetables, especially broccoli, broccolini, cauli, Brussel sprouts, sprouts too.

But it's not all cutting all the good stuff out and eating the stuff that you know , you used to push around your plate when you were a kid. There's some really delicious liver friendly things like coffee, tea and delicious berries, nuts,, dark chocolate, salmon and other fatty fish, cranberries and beetroot, grapes, grapefruit, - okay that one's not so good😜, but these are high in antioxidants and /or fibre.

In addition, your doctor may prescribe medications if you develop odema or acitise. Medications that reduce ammonia in the blood and diuretics to flush the water out if you have swelling due to water retention.

I hope this information has helped you puddy. I also found when I first started researching my condition that the internet is a really good resource but those results that come from academic sites or reputable medical sites are best to stick to if you do not want to be misinformed.

Good luck and keep up the fantastic work!

[puddy68 in reply to InsensateState]

Thank you so much, Insensate. Thanks so much also for your information about liver friendly food - I felt as if I was drowning in all the info out there on the internet. I'm becoming wary of google, as some medical sites are all doom and gloom, whereas others give you a glimmer of hope. I can't thank you enough for the time you put into your post to me. God Bless.

[Starlight79]

Hi, my story is a bit similar to yours, started heavily drinking after post natal depression which lead to extreme anxiety. Drinking 2 bottles a night most nights, had a routine blood test which showed abnormal liver function so was referred to the liver function team for fatty liver, I never went, ignored all the signs I was unwell, kept on drinking. Fast forward to July last year and I started having a swollen stomach which was ascities, then two weeks after the drain I started vomiting blood which was varicies, November I had a massive internal bleed which I nearly died from. I was put on the liver transplant list as my liver was decompensated and HE was bad. With a lot of hard work I overhauled my diet, slowly started putting weight on and exercising, no alcohol since July I’m in better health than I ever was! I’ve been taken off the transplant list, still closely monitored but put a stone on ( I was 6 stone at one point ) no jaundice, no ascities and loving life. Initial diagnosis isn’t a death sentence it once was, I’ve had days I’ve cried and hated myself as this was all my own fault, I’ve so much to loose but that doesn’t help. Being positive and facing up to the illness and making changes is all we can do. I hope this helps and I wish you all the love and positivity in the world xx

[puddy68 in reply to Starlight79]

Hi Starlight.....thank you so much for reply! I really appreciate it. And yes, our stories are very similar. It's fantastic that you've been taken off the transplant list, and made such improvements. You have really inspired me, particularly how you've mentioned diet and exercise. And being positive, which I'm trying really hard to work on, as it can be so hard at times, particularly when you read some of the websites out there. You have given me such hope....thank you, and God Bless.

[Scrags64]

I was diagnosed over 5 years ago with stage 4 fibrosis and hepatitis. Mine was due to medication, not alcohol. Only diagnosed when i bled out at home. Also died on the operating table the next day. I have had 24 gastroscopies and over 70 varicles banded. I was told I would need a transplant pretty soon as my liver could never get better. My liver is now compensated, HE more or less gone. Still some ascites. Complete change of diet. Little to no sugar, salt but lots of dark chocolate as good for the liver, also black coffee if you can stomach it. I used to suffer really badly from anxiety and depression, but I know I am lucky to still be alive, so I live every day as my best day. You can do this. Ask your Dr for referral to the social prescriber attached to the surgery as they can signpost you to many different agencies. Xx

[puddy68 in reply to Scrags64]

Thank you Scrags64, you have given me such hope. I am so happy that your health has improved so dramatically. I'll give the black coffee a go [and the dark chocolate!], and definitely look into some psychological support. Goodness knows I need it. Thank you so much once again, and God Bless.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear puddy68

Here is the link to our information about alcohol-related liver disease (ARLD) and cirrhosis on our website, which you may find useful

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in... (including a suite of publications towards the bottom that are downloadable)

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

[Grassroots112]

Hi there and sorry you are going through this, the good news is you can get your liver compensating again, but you must never ever drink again otherwise you will die and not in a nice way and once your liver is decompensated, with continued drinking, it will just fail full stop along with other organs. As for timescales, no doctor should really say anything because the truth is no-one knows, everyone is different and it seems to affect everyone differently.

Some people make huge recoveries and live long and normal lives, some get all kinds of complications and need a transplant or sadly die. By stopping drinking, eating a healthy balanced diet in accordance with whatever your doctors/dietician suggests for you and getting regular exercise, you stand a very good chance of not just going back to compensated, but living a good few years yet.

But again, you can never ever drink again. I had alcohol hepatitis and likely decompensated cirrhosis as I was hospitalised with jaundice, ascites and a whole host of complications and now they say I’ve reversed the damage I did to the point I now have moderate fibrosis, but my doctors have told me I can never ever drink again because if I did I will get cirrhosis for certain.

My own hospital has patients who have been living with cirrhosis for over 20 years and have patients who have been living post transplant for 20 years, they come in to have chats with people with cirrhosis and who are going through the liver transplant process, so don’t go off what some doctor says and especially what a few internet searches return.

I’m almost 16 months sober myself and I wouldn’t be here now if I didn’t stop, I’d have lasted maybe another month or so and that’s from my doctor, had I hit the booze again after coming out of hospital, I’d have ended up straight back there within weeks as I’ve sadly learned happened to a once childhood friend of mine who died an awful death apparently and was secretly drinking even when in hospital while getting drained for ascites. He was my age and the photos… I thought I looked like death when I was in hospital!

Of course no-one can tell you to not drink, this is on you and your anxiety is obviously a contributing factor so I hope you can get help for both and wish you nothing but good luck going forward and for you to take care and all the best.

[puddy68 in reply to Grassroots112]

Hi Grassroots112.......thank you so much for your reply. I will never, ever drink again. The thought of it absolutely revolts me, and I realise that I have so much to lose by even contemplating drinking. I'm still researching the best diet for me, and I've really enjoyed going to the gym since I signed up [a whole 3 days ago!!] Thank you also for your advice about internet sites.....for someone with anxiety it really is a no go zone. It's fantastic that you're 16 months sober, and I'm so sorry about your friend. Thank you once again for giving me so much hope - it's stories like yours that keep the night terrors away [seriously]. God Bless.

[Grassroots112 in reply to puddy68]

You’re welcome and I’m sure you’ve got this, for me it was the initial scare and then the thought of me dying and leaving my wife and kids alone without me, that and of course the thought of me losing them had I went back to drinking which would have happened. Today life is great, some physical issues, but I’ve had it lucky really. You joining a gym is a huge plus for you in so many ways, for your mental health, physical health and a sign that despite your condition, you’re fit enough to go to a gym. By remaining sober you stand a great chance of having a very good recovery. I don’t have cirrhosis, or rather that’s what they now claim, but I look back at this time last year and I could barely walk still due to what alcoholism had did to my body and I was likely depressed. Now I love life and wake up every morning buzzing to just be alive and now I’m content with myself even if just doing nothing around the house, my drinking become a problem the moment I started drinking in the house which normally happened as a result of me having nothing to do and me being bored. Now it’s the complete opposite. You can do this I’m sure, again all the best to you.

[Taffypaul]

Puddy , nobody can tell you how long you have to live with liver issues it's an amazing organ. Stop drinking, try to eat healthy, get plenty of exercise. That's my key thoughts everyday. Enjoy your life , think happy. Not had a drink for 2 years and 3 months, don't miss a single drop. Good luck.