I been diagnosed with cirrhosis - British Liver Trust

British Liver Trust

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I been diagnosed with cirrhosis

33 Replies

I been diagnosed with cirrhosis,my tests I think  ALT was over 800 but in two week they come down to 246. I am really scare. I feel ok apart be little bit weak and tired.Eyes and tongue is normal colour. I had problems with liver 6 years a go but all looks like gone. I lost my dad months a go and I had drink for 3-4 days. Normally I don't drink at all .  

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33 Replies
briccolone profile image
briccolone

sorry to hear that-how long have you known you've had cirrhosis and how was it diagnosed? Am presuming the liver issues are caused by alcohol? The fact the ALT came down so quickly looks like good news. First and foremost you need to stay away from alcohol although I understand why you went off the waggon. You need to get all the test available and post here. In the meantime-watch your diet -reduce salt amd maybe take a standard multivitamin if you're feeling low. Loads of advice on this forum.

in reply to briccolone

I had eczema on hands for one year,creams and ointment.Sleeping in the gloves,working in the gloves.Dermatologist ask for blood test and patch test ( positive reaction on iron build in the body because of liver dysfunction )  I don't know how long I have cirrhosis ,but I been for ultrasound two years a go and they said I have little bit fatty liver but nothing what I should be worried. Two years a go we been pregnant 3 times,we lost all. My wife father was diagnose with cancer ( they treat him six months with painkillers and paracetamol) and months a go I went to see my parents ( Easter ) I spoke with dad make jokes. Two days later he didn't wake up. So lots of stress, me and my wife end up on antidepressants. Now is me. I don't know if my wife can taking anymore of sadness.

Ok that's my story.

I try stay positive and keep hope there is a chance to recover.I am exercise  every morning for 20 minutes on bike and than sit ups (100), cereals, benecol (lover the cholesterol), vitamins, fresh air. 

Estiebargle profile image
Estiebargle

Hi,

It's going to be ok. Cirrohsis is not the end of the line. I chose to look at it as part of the journey. One that hopefully can be managed.

Do you have a  good specialist? If your cirrhosis is from Alcohol you must quit now to avoid an more damage.

Getting plenty of rest, managing g energy levels, eating more plant based protein have all helped me.

From now on (I assume) you will have 6 monthly ultrasounds, and blood work monitored. Keepin the look out for the nasties.. Varcies, acieties, HE ... These are serious complications from decompensated cirrhosis and need urgent medical attention.

You are not alone....

Good luck,

in reply to Estiebargle

Thanks,just waiting for answers is horrible,I need wait for specialist two weeks.

Estiebargle profile image
Estiebargle in reply to

You poor thing. That absolutely sucks my friend. It's agonising and the medical system is tricky to navigate at times. 

architect01 profile image
architect01 in reply to Estiebargle

Hi

Good advice. I have had/got the nasties. I had an endoscopy on Friday where l had 2 grade 2 and 2 grade 3 varies banded, on rifaximin to control the HE and ascities which is being controlled with directics which are slowly being reduced to save kidney damage. Quiet what's next l am not sure.

Trust everyone else keeping well

Best wishes

Estiebargle profile image
Estiebargle in reply to architect01

Hang in there. I'm so sorry that you're going through that. 

Hopefully you are being assess for transplant and being well looked after by specialists, friends & family.

All the best.

Xx

architect01 profile image
architect01 in reply to Estiebargle

Many thanks l am seeing a transplant team soon with a view to going on a list      a bit apprehensive hoping it will be positive.

Best wishes to all

leseps profile image
leseps

You will also need an endoscopy and a colonoscopy to check for gastric varicies.

jbrking profile image
jbrking

As someone else mentioned, the fact that your ALT has come back down is good news.  And I think you have realised that keeping away from alcohol seems to be the answer here. Sorry for your loss - losing your father is horrible. Let us know how you get on. The waiting is horrible but as your ALT is coming down and you feel ok, sounds like you're heading in the right direction. Take care x

Many thanks for your support I really appreciate. 

I forgot say they find diabetes and high cholesterol which can be connect to disease. 

briccolone profile image
briccolone in reply to

Yes there's an established link between fatty liver and high cholesterol

jules45 profile image
jules45

I'm so sorry with all that you have been through, my thoughts are with you and your wife.  I have cirhossis after drink related liver failure on 2 occasions.  The reduction of your blood level is great news so your doing something right.  Living with cirhossis isn't great but I have a decent quality of life after quitting drink.  I live on my own so care for myself.  I get depressed about it but I just try and maintain my physical health as best I can, I have good days and bad days with physical health, ie, tiredness and just feeling yuck then there are days when I'm ok.  I had a bereavement last January which knocked me for 6 so I'm sorry about your dad.  Now you have been diagnosed you will be cared for under a hepatologist or gastroenterologist, and have further tests to see what the cirhossis is doing.  There is light at the end of the tunnel. I wasn't expected to survive the liver failures but I am here and I wish you lots of best wishes.

julie

briccolone profile image
briccolone in reply to jules45

Good post jules

Steven57uk profile image
Steven57uk in reply to jules45

i was diagnosed with cirrhosis last year routinely.

my bllod tests are now normal alt etc dispite drinking again.i find it so hard to stop after 40 yrs,i have tried aa twice it workks for a few weeks but the pull back is so so strong.any ideas?my doctor says hes amazed how well my body deals with alcohol.(and that doesnt help much)i have such a high tolerance to drink i never get drunk.i do get depressed though and its awful, so round and round the situation goes.any thing you can say be appreciated.

RHGB profile image
RHGB in reply to Steven57uk

Drugs (alcohol) change your brain, change the way it thinks and responds neurologically. You need drugs (medication) to reset it back to how it was.

Believe me, you are on a hiding to nothing trying to give up by willpower alone. The AA will not publish their stats, but it is believed to be a 90% failure rate.

There are two types of medication (two main types) available that are approved by NICE/NHS. They are Campral and Selincro (TSM method).

Have a read up and come back if it is something that interests you.

jules45 profile image
jules45 in reply to Steven57uk

Hi, I know exactly how you feel. I got away with it for years and alcohol was my best friend helping or so I thought, me deal with my childhood issues and depression. Like you I had a high tolerance to drink and functioned very well until I was 39 then I crashed. My liver failed. I survived and after spending my 40th birthday in hospitall was discharged. I had a abusive home life but remained teetotal despite everything. Then I went to a womens refuge in 2013, and due to not being rehoused I returned home just before Xmas and he had, so I thought had changed. It wasn't long before I had an drink thinking it wouldn't harm me and quickly the wine took over. Quickly I crashed again, and my liver failed. It's not worth me drinking again as my liver is on a knife edge and I have so much wrong with me. I have diazipam 6 mg per day to help the craving and have replaced the glass to mouth habit with a soft drink. I don't go to aa as talking about alcohol gives me cravings.. I'm now suffering cirrhosis, varices, neuropathy when the drink damaged my nervous system and much more. I would not wish a liver failure on you but if you don't act now it will happen. Your liver is probably so tired of processing alcohol that it will eventually give up. I can only tell you my story and hope that you see your GP and try to get a med that calms you and you can take during a craving. I had a home detox years ago as you can't just quit the drink abruptly. Perhaps explore that avenue as it makes quitting safe and you can get that stuff out of youreach system and start on a new path. I'm rooting for you and I'm here if you need me keep me updated with anything and I'll try and help. Keep positive cos I've been in your shoes and it's horrible. Love Julie xx

RHGB profile image
RHGB in reply to jules45

Unfortunately most (nearly all) GPS will not tough patients with a barge pole who have a problem with alcohol.

They will refer you to an ARC, which are generally staffed with idiots who don't know the first thing about alcohol addiction.

I too have been hospitalised for liver failure.

jules45 profile image
jules45 in reply to RHGB

Hi again, I suppose I must be lucky living in mid Wales. I'm racking my brains to think of a solution for you. Your not a lost cause and your doctor should be more helpful. You can quit, it's just how

Best wishes julie xx

Steven57uk profile image
Steven57uk in reply to jules45

i am 57 now and have fought alcohol for near 30 years.like you said,aa mad me crave drink more,yet the people there were great,well most were.

strange thing is my doctor is never concerned about my predicament,as my lfts are gone back to normal.

i cried for months when i first found out and abstained for over 8 months.

RHGB profile image
RHGB in reply to Steven57uk

Like I said, there are medications out there, that will combat long term alcohol abuse.

RHGB profile image
RHGB in reply to jules45

Well, I was born in Wales and I would count living in mid Wales as being lucky, I always think of Builth when I hear mid Wales. ;-)

Don't rack your brains too much, I sorted myself out in the end. I was merely warning people that GPs won't touch people with alcohol problems and will refer people to alcohol (& drug) recovery charities which are funded by the government out of the mental health budget. They'll love you if you are a heroin user, methadone will be dished out quicker than you can ask for, but tell them you're addicted to alcohol and their entire arsenal is, keep a drinks diary and the offer of Antabuse.

jules45 profile image
jules45 in reply to RHGB

How interesting that I lived in builth for many years and had a go who wouldn't help me., she refused to allow me a home detox and wouldn't work with the agency prepared to give me one. It's only since leaving that town for 13 miles away when I had a new surgery and more help. I agree with you about heroin addicts.they queue up outside the chemist at 9am for their medsvand most are still on drugs and have methadone as well. I got told that antiabuse would be unsuitable and i had to attend agency for a few times, then had thiamine injections and I got a 24 hour diazipam detox with their nurse who spent all day and part evening with me and a friend stayed over for the night with the nurse coming 8am to breathalise me and check me by which time I was alcohol free. The agency was my lucky break, and I no longer attend. I only went for detox on my GPS instruction. So, in builth I was in the same situ as you are and its disgraceful. Can you change surgeries?

Julie xx

Bournemouth profile image
Bournemouth

I have liver diease called portal hypertension I'm also scared I think mine has got a lot worse its a very rare diease been caused by medication I know how you feel I have got to go tomorrow for a heck up and dreading it so far had no treatment as they can't treat it had three years now.

AyrshireK profile image
AyrshireK in reply to Bournemouth

Hi Bournemouth, have you been told you have cirrhosis?

The reason I ask is that portal hypertension isn't a liver disease in its own right but a symptom of liver damage (cirrhosis) - it is caused when blood trying to get through the liver can't because of blockages due to the damage and therefore the blood backs up causing pressure to rise in the portal venous system (a.k.a. portal hypertension).

 

Portal hypertension can go on to cause issues such as ascites, oedema, portal hypertensive gastropathy (damage to stomach lining), varices in the oesophagus and hepatic encephalopathy.

In some cases to prevent the condition getting worse some patients are given beta-blockers such as propanolol or carvedilol.  Regular endoscopy exams are also required to check for varices since if they bleed the result can be catastrophic.

Your medication may have triggered the 'rare liver disease' as it has been described to you but the portal hypertension is a side effect of that liver disease rather than an actual liver disease.

My hubby has cirrhosis due to auto-immune liver disease/auto-immune hepatitis and it only came to light when portal hypertension caused veins in his oesophagus to burst - my hubby isn't on beta blockers but did have an aggressive 'banding' regime carried out by his consultant to tie off all varices and prevent future bleeds.  His portal hypertension also cause several aneurysms to form in his splenic artery and these had to be embolised to prevent any fatal bleed there too.

Best wishes for your check up tomorrow.

Katie

Bournemouth profile image
Bournemouth in reply to AyrshireK

Thanks for explaining it to me. I also have an automune problem too and it's causing heart and lung problems due to pressure. They think their is a blockage somewhere but can't as yet find it. They also checking me for wilsons diease as I am border line so they say. It's all very wearing as you are aware but I hate feeling ill and struggling everyday. All the best. Angela

jules45 profile image
jules45 in reply to AyrshireK

Hi Katie, very inrmative as I have cirhossis with portal hypertension so thanks for your knowledge, fab as usual

Best wishes

Julie x

AyrshireK profile image
AyrshireK in reply to jules45

Thanks Julie, that's a year old post now. Hubby is still ticking along, back over to Edinburgh this Wednesday for his now annual endoscopy exam and a consultation. His portal hypertension has reduced significantly after the death of his spleen in June 2014 and touch wood since then there hasn't been the same blood backing up problems and no further varices.

All the best to you.

Katie x

jules45 profile image
jules45 in reply to AyrshireK

Hi Katie, I was going to ask how your husband was dowing. Seems more positive thank before. I'm waiting for the dreaded endoscopy. Last one found 7 small varices not bandable at the time. That may have changed. Have a consultation with hepatologist next month which is overdue. I moaned on here about no app tt and took advice and rang his secretary. My spleen is massive and platelets so very low. Apart from that it's nice coming back to this forum as I haven't been on here for so long.

Best wishes, Julie xx

AyrshireK profile image
AyrshireK in reply to jules45

Hubby very much the same. Just ticking along, making the most of the days with higher energy levels and just keeping an eye on things & resting on the worse days (today was one of those and he was in bed at 4pm snoring away). No worse and no real noticeable improvement. His platelets and clotting time improved no end after the embolisation operation on his splenic artery and that's what's improved the portal hypertension and his overall bloods. Fingers crossed there are no bands required this week - May 2014 he had his last bands done (42 in total since April 2012) but once his spleen died he hasn't had any more.

Keep on plodding on, you did right to chase appointments, we have learned that the hard way after waiting 8 weeks for a follow up appointment (to learn biopsy result) and non-referral to Edinburgh (when doctor went off sick himself) and repeated non ordering of 6 month ultrasound scans.

All the best for your upcoming appointments.

Katie xx

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Just update: all is in green all results apart diabetes ( its slightly above normal but its coming down) .I am run everyday 3-4 km cut half what I eat before ,in the morning smoothie. Dont taking any tablets. Just waiting for CT of liver and more scans.I been diagnose 7 years a go with hepatitis C ,its gone .

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