Newley diagnosed help!

I’m 43 and have been diagnosed with cirrhosis . I work full time and have no problem keeping up with this and my busy home life to a husband and three children. I have binge drank at weekends and then started to Sri k after work from about 7pm till I went to bed vodka and Diet Coke . Id have brief periods of weeks off days off etc but the doctor said even though he’s not what he considers an alcoholic but I am /was ( sober six months) definitely a heavy drinker which I knew. I did develop Ascites and am now on a diuretic every day and now only have a tiny amount detected in my abdomen. I have no other symptoms my blood work is perfect except my Gtt and alkaline phosphate which is high 194. My doctor says I’m stable I don’t really understand all this it’s complicated and I don’t know where I am with my condition as my doctor is so busy . My endoscopy shows three small varies that are termed as well covered. The liver nurse has just prescribed ursodoylic acid three times a day I don’t know what that’s for either she said to keep my bile flowing? I’m just scare I’m going to die . Can anyone shed any light on all of this. When I ask my liver nurse she says she can’t say and that I’m stable at the moment.TIA

[redpoint72]

Hello Annin.Well dont jump the gun,your classed as stable, which is good.

Its so much to take in,it takes time to adjust, you will do it.

Try not to be scared by it.

I'm currently compensated, and stable.

Stopping the alcohol is the best thing you can do for yourself, and a good diet.

Thats good with the varices, being well covered, not likely to bleed.

Better than mine ,at my last endoscopy, several needed banding,and still some left unfortunately, even with me taking my beta blocker.

Ive not drank alcohol in over 4 years, but still my ggt is stubbornly high, last bloods that I got told ,it was still 395!!!!

Also reassuring the lack of serious ascites.

Well to be honest, quite a few of us are waiting to see/speak to our consultants, more often than not i usually speak with my great liver nurse,I find mine so helpful.

Take care.

Chris

[Hidden in reply to redpoint72]

Thank you for taking the time to reply . Sorry to hear about your varices but I know that they can help with other things. I work in a healthcare setting and come across liver patients every so often, I spoke to a lady that had her varices glued as they were too large to be banded and she was ok.

I think with me , my doctor was quite quick and basically wasn’t happy about how much I’d drank, which I get. It was my very first appointment and I know he was running behind and stressed but he basically just said come for ultrasounds every six months. The appointments can be done over phone in future and to remain abstinent. In future my life expectancy will be effected and keep abstinent which I have for 6 months so far .

I came out of there feeling what’s the point in all the good I’ve done. Exercising every day , healthy weight, not drinking and eating healthily. But I’ve pulled myself together and decided it’s my life and I will fight for it .

Best wishes

[redpoint72 in reply to Hidden]

Keep up the good work,it will pay dividends in the future. Well you don't need me to tell you that if your in health care. More often than not you don't get alot of big feedback from our consultants, very matter of fact!!!.Yes 6 monthly ultrasounds and bloods,thats the norm for cirrhosis.

Saying that my 6 monthly ultrasound is 6 month late!!!!!

Stay positive, it helps alot.

My best.

Chris.

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Annin,

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Aotea2012]

I’m sorry to hear about your diagnosis- but don’t panic. You sound well compensated and if you remain abstinent and eat healthily then there’s no reason why you should deteriorate from the way things are now. The alcohol free lifestyle is crucial though. I was diagnosed 2.5 years ago and I was in a much worse place than where you are at the moment. I’d gone into acute on chronic liver failure and was sick in hospital. I’ve kept alcohol free in that time and recovered really well. My bloods are all normal. My GGT was slightly raised at my previous check up but was normal at my last one. My consultant said to me that it was the marker which takes longest to return to normal. I live a normal life and there’s no reason why you can’t continue to as well. Try not to worry- much easier said than done. I now forget I have cirrhosis apart from when I have my six monthly check ups- but it takes a bit of time to get there. Use the BLT helpline - they have given me great advice over the last few years.

[Hidden in reply to Aotea2012]

thank you so much I really appreciate the reply. This is my first ever social media post but I thought I’d give it a try and I have already started to find out so much. Thank you I didn’t realise gtt was the last to come down. I’m feeling so much better than I ever have without alcohol. Best wishes

[Oludeniz2017]

I just wanted to say a huge well done for giving up the alcohol. Amazing achievement x

[Hidden in reply to Oludeniz2017]

thank you x

[AnxiousPete]

Have you not had a formal diagnosis ? Have you had a fibroscan ? You are entitled to specific information about the tests you've had and medicatikns you've been given. If you mean you've been given ursodeoxycholic acid this is a treatment for cholestatic liver disease.

[Hidden in reply to AnxiousPete]

yes alcohol induced cirrhosis the liver nurse said, not been informed in writing though. I have had a fibroscan a few weeks ago was bad at 44. No fat on liver though. Yes have just prescribed ursodeoxychocic acid. I’m baffled what it’s doing. I wondering if I should ask for a beta blocker to keep my varices in check . The liver nurse said she was putting me forward for BOPPS clinical trial but if they don’t choose me she’ll put me on the medication they are testing anyway. Apologies for sounding silly but all this thrown at me is confusing. Thank you

[Frananncru]

Hi Annin,

I was diagnosed 4 yrs ago with cirrhosis ago secondary to None alcoholic fatty liver disease .

I did enjoy alcohol socially , sharing a bottle of wine or a couple of G&T’s if out with friends. I didn’t have any real symptoms but noticed spidery veins on my chest , took myself to the doctor ,had blood tests which were very abnormal , scan showed no acites , biopsy confirmed the diagnosis , endoscopy confirmed “ stage 2 varices” and was started on beta blocker medication to keep the pressure down and reduce the risk of bleeding .

No alcohol since liver diseases suspected, I’m currently waiting for gallbladder op (gallstones) but apart from being a bit tired , I have slowed down a bit , ( I’m 67 ) but other wise enjoying life .

I have an USS every 6 months and annual blood , liver doing ok and not causing any concerns

No one can predict what will happen next, try to look after yourself , resist the temptation to consult Dr Google ,use your specialist nurse and or the specialist nurse here .

Write your worries or question down , stay off the alcohol and be kind to yourself .

Cirrhosis isn’t the “ death sentence “ I was terrified about, it can be monitored and if or when start to change options will be discussed.

There is always support here too

Chin up !!

Fran x👍

[Hidden in reply to Frananncru]

thank you so much x