I feel like I’m be left in the dark! Why do I have to ask all the questions and try and do my own research? I understand everyone and case, symptoms are different from my own research but surely in the times we live in the consultant and or team should give patients a general knowledge on what may or may not happen.
if I knew about some of the symptoms that have been happening to me then I wouldn’t get a shock every time something new develops. I feel it’s my right to be informed of all outcomes about the disease and I think it’s absolutely unacceptable that it is not being discussed.
I don’t think I should have to google anything because I cannot trust in that information but where else am I supposed to get it from? I have decompensated cirrhosis & don’t feel well enough at times to be wasting my energy trying to find information. I feel like I’m being a nuisance when I ask questions and this is causing added unnecessary stress. My family are constantly asking me for answers that I don’t have for them. I abstain from alcohol since my diagnosis. Stigma around ARLD seems to be an unsaid big issue. I feel the vibes. People who are not in recovery from alcoholism cannot possibly understand the disease of alcoholism. I was fortunate to be in recovery for many years with help but unfortunately relapsed. Shortly after diagnosis was given. Obviously abstinence and continued recovery is paramount for me. I have followed what they have told me to do to date.
What I feel I need medically is transparency and being offered information rather than having to ask for it. I just can’t understand it!
Really confused now about the whole thing and while my liver is decompensated with cirrhosis I will say that I feel grateful to be trying to deal with this in sobriety and not numbing the severity of the disease with alcohol.
Any advice would help. Thanks.
Ann.
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Chick_atee
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Hi Ann, I can feel your frustration just from your post. I’m not a medical professional but saw both parents die with liver problems. With Dad it was bowel cancer that went to his liver, with Mum it was PBC. Both times the consultants told us that livers are ‘notoriously unpredictable’. So that is probably why the doctors can’t tell you what will happen. I could tell you all about what my parents went through but it would upset you and may not be what would happen to you.There are too many possibilities for a doctor to cover them all.
If you look at some of Katie’s posts you’ll see that with abstinence and looking after yourself you can turn things around. You’re right not to google. Keep off the alcohol and ask the doctor for a referral to a dietician. Hopefully then you won’t find out what happens next. If relatives are asking questions, get one of them to go to your appointments with you and then field the questions from other family members. There’s a lot of monitoring and waiting and not knowing with cirrhosis. Sorry, I know this doesn’t help but I do sympathise.
Hi ann.Don't feel a nuisance for asking questions, to your medical team,consultant's etc. I kept asking mine for more information, i wanted to know more about my liver cirrhosis diagnosis, as I knew what I was up against....
In the end my gastro consultant said in a letter,that she was glad I was taking an interest in my condition!!!!.
Ýes only stick to the nhs,or the British liver trust.....they are the ones to trust. Well done with the abstaining, the best and only way forward really. As I mentioned before,to you ann,the stigma is still there and some folk are very quick to point a finger,unfortunaly. They don't know the full story.
Maybe phone the blt nurses, they can help you out im sure with more information, there great.
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)
Thank you. That would be great but I live in Ireland. Finally a foundation was set up last December and they developed a website and it needs a lot of work. I have found all the information on the BLT website very informative so I thank you for that.
I can identify with everything you say here. The stigma, alienation, pity and fear are hard to deal with. In my early days after diagnosis I fell, cracked 3 ribs and partially dislocated my hip so I couldn’t do anything for Month. So yes, the internet and research became very important. No one wanted to visit with me much because they thought I was going to die. It gets better. Celebrating 1 year sober today!
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