I have been diagnosed with decompensated cirrhosis of the liver, due to alcohol abuse in October 2022. In December 2022 and at the end of January , i had esophageal varices banded due to bleeding .
Since i have been abstinent ,I am doing my best to keep up with a well balanced diet , and sport activity . I'm going every 6 months for a regular check up followed by a telephone appointment. Last time i had to push for a scan and blood tests.The doctors didn't see a reason to do it , just because i said that i'm OK (on the phone!)
The scan showed the appearance of 7mm. mark on my pancreas(According to them ,that's normal)??? . The doctors never explain my blood results or what actually is my condition. Is it still decompensated or is my liver improving ? Not to mention my MELD score.
No oesophagus check any more.
Is this normal for patients like me or...???
Honestly i don't know. I have no support (I'm hiding my diagnosis from my relatives , and basically living on my own)
Any suggestions and guides, on what to do, in order to understand my present health state, will be Much appreciated.
Stay healthy
Thank you in advance and have a lovely day
N
Written by
Nick75
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Hi Nick75, If you have confirmed Cirrhosis alcohol related or not as I have not ( NASH Cirrhosis) you are entitled to scan of liver and bloods taken every 6 months. Also entitled to be made aware if not through post then buy interview on the phone of the results and to have them explained although sometimes it’s a struggle pulling the information from whoever is letting you know results. Pat
It sounds like you’re being let down tbh Nick. My belief is they need to do bloods and scan every 6 months in order to monitor for any progression of the illness so they can adjust treatment. Especially with the life threatening nature it possesses
I’m in a similar position, although not had banding and not had a scan since diagnosis, which was 9 months ago. However they want to wait to see if my liver has recovered before doing it as bloods are improving all the time.
I can’t comment on your family situation in regards to telling them. I too was sceptical as I didn’t want to worry them or for it to get out, due to the stigma. But keeping and dealing with this alone will make an already very difficult situation harder.
There has been days I’ve struggled with this. Yesterday for example and I’m glad o had leeway with family. My ex is using my diagnosis against me in court to suggest I’m unfit to see my kids. So once the info is out there people love others misery unfortunately, but having 1 or 2 people will help with all this .
You are entitled to copies of all your blood results, get them to post or better still email them, as you should get them quicker. Then once you have you can phone the British Liver Trust nurses helpline, they can help you understand the information and are also brilliant at sign posting your way forward. Definitely stay proactive in your journey with this disease, we found if you’re not you can get missed although for my husband I feel covid had a lot to do with it. He had ARLD and has had a transplant last June and is doing really well now.
You’re right to ring the BLT nurse helpline they are fab. I agree with others it doesn’t sound like you’re getting the care you need from the hospital. ( I’m assuming it’s not GPs looking after you). Consultants secretaries are fantastic. Might be worth speaking to them, saying you’re worried about the scan results and you’d like to know if your liver is improving. They’ll probably go and talk to the doctors and either call you back to tell you what the doctor says or make you an appointment. You’re right to query anything that you don’t feel comfortable with.
After a lot of back and forward, tests and apps in 2023 my husband was diagnosed with cirrhosis in October 2023. This followed 20 years of heavy drinking but in the 6 months from July 2022 to Jan 2023 this increased significantly due to the death of his father.
He has a scan every 6 months to check his liver, and regular blood tests. His condition is exacerbated by genetic haemochromotosis which was diagnosed at the same time so he has a full blood count run monthly while undergoing treatment for that but also has a full blood count every 6 months. We work on the basis that no news is good news and if consultant doesn't need to see him them he won't.
The most important thing for you (and for my husband) is maintaining total abstinence from alcohol to ensure he continues to stay well. Lord knows that is tough at times, but returning to alcohol means he'd likely be dead in 6 months so he knows the importance. This page is an absolute lifeline and a wealth of knowledge. Good luck!
Had my fibroscan 24th October was sent to gp on the 26th and still haven't had my results doctor says they haven't rec6them but I know they received on the 26th October as receptionist told me
If you 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)
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
If you would find it helpful to speak to others with shared experience, you can register to join a group here
hi am a bit like you, diagnosed march 23 but told if I quit drinking my liver could go to compensated within 6 month , a have not touched drink since and had scan dec 23 liver no better no worse , had the varices bleed January and currently getting bands, so I have not clue what the future holds, lack of communication also and I never get results from blood 🤷♀️
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