Cirrhosis Family Member Queries please

[AS-Support]

Hi everyone,

We have recently had a close family member visit us. They were diagnosed with alcohol linked Cirrhosis last year and advised at the time any further alcohol could be fatal.

I know they have been continuing to drink alcohol, but i am unsure of the extent or frequency.

We live very far away and I have kept an eye on the symptoms, noting many things which they see as being completely unrelated (however, i believe through research that they are linked). I am unsure what i can do to support, we are their only family and in a different country.

Their visible symptoms are:

yellow complexion - face, arms, everywhere

Swollen ankles

Swollen and joints in hands and wrists

Red capillaries chest and face

Hemorrhoid's

Chronic Fatigue and insomnia

Unable to eat (or can only eat very small amounts)

Struggling to bite, i believe due to painful teeth

Regularly sick

Changes in tastes (says many savoury items taste sweet)

Struggling to walk

Significant weight loss, muscle loss

Slurred speech

I am struggling to have a conversation with them about any of these, which i understand. I asked them to visit the doctor to ask for a 'fit to fly' assessment or check in, they said to me that the doctor has given the 'all clear'. I did say that i know that's not possible. They have travelled a significant distance to see us and due to go home in 3 weeks, i don't know what we can do here.

My questions for this forum, is to seek their experience of this level of symptom. What happens next? I can take the realities of this and want to prepare and create some sort of plan (no idea what).

They do not have alcohol now with us, and i appreciate the dangers of that (although again i'm not sure of the extent).

Thank you for any words of experience or advice.

[GAgirl111]

Well, I don’t know the future, but those symptoms make me terribly sad. They aren’t a good sign. Continuing to drink alcohol is the absolute worst thing they can do. Not lowering sodium is also very bad, but nothing is worse than drinking alcohol.

However, it’s important to understand that some people just won’t stop, and it is their responsibility, not yours. Whether you express your concerns to them is up to you, but try to enjoy the rest of the visit with your family member.

[Roy1955]

Your relation is probably fully aware of how sick they are and also aware that this visit might be their last.They have probably made their choice not to share the full extent of their illness with you.

I would guess that cirrhosis is only part of their current illness and they are living their final time carrying on as "normal".

[AyrshireK]

Hi AS, it's either as Roy has said or indeed they are in total denial both about their drinking habits and also the degree of their illness. With the list of symptoms describe (some very much suggestive of very advanced liver disease) they are in a pretty bad way and it probably is only a matter of time before something dramatic happens that lands them in hospital - possibly something like a big bleed, development of ascites with it's infection risk.

Some folks hit that point and it's provides a serious wake up call which they heed and go on to make the necessary lifestyle changes - we have many forum members who have reached this point and gotten sober improving their life no end or at least opened up the opportunity to progress to transplant. Other individualys sadly continue in the grip of the alcohol habit and don't/can't make the changes they need to leading to a very sad demise.

Sadly as a loved one all you can potentially do is offer love and support but you can't change them or their habits - that's a decision that ultimately has to be made by the individual concerned.

Unfortunately we see countless loved ones and partners on here who have tried to fight the battle for their loved on only for the drink and liver failure to claim them in the end.

Katie

[AS-Support]

Thank you for your replies. I'm not sure how the next few weeks are going to go and we just need to feel our way through it. I don't know how I'm going to send her home at this moment in time, it's very very difficult.

At this point if it's denial or avoidance, I have no idea. She refers to diverticulitis for pretty much everything, but the other points are too much for that.

We can hear her be sick and then she says she's not. All very complex and hard to know what's right.

But you are all correct in saying, we have to try enjoy this time.

[AyrshireK in reply to AS-Support]

Is she obtaining drink whilst with you? I think you said not but this could be extremely dangerous too. A sudden drop of alcohol intake or sudden cessation can bring it's own set of risks and symptoms. drinkaware.co.uk/facts/heal...

Katie

[AS-Support in reply to AyrshireK]

Yes that's correct. She has no alcohol with us, she wouldn't be able to walk to the nearest shop for any. I unpacked her case as she couldn't so I don't think she has any with her either.

I know this maybe too much information, but I cleaned blood in the bathroom last night which I don't think she noticed. So I guess that confirms some further symptoms unfortunately.

I didn't realise the need for a low sodium diet and have noticed salt is added to anything savoury that she does eat. She looks better today and less yellow, but today she is shaking and yesterday couldn't leave the house because of tummy upsets.

I need to find the right moment to approach it but maybe need to give it a few more days or even a week to find the right opportunity and work out what to say.

Can you please tell me how often you typically see a doctor or consultant when living with cirrhosis and if they carry out regular tests or checks? (And what those are if possible).

Thank you so much for your support here.

[AyrshireK in reply to AS-Support]

I'd be worried about the sudden cessation in alcohol, if she's been drinking since diagnosis and has been up to coming away some of the symptoms like shaking and being sick could be actual withdrawal symptoms - cold turkey is a dangerous way to detox. Then again they could be signs of infection or anything.

Can I be a bit personal and ask who arranged the trip or how reticent or otherwise was she to come? Maybe if it was her she was coming to you because she knows exactly how poorly she is and perhaps wants to know there are people round her for when her time is nigh. If she's bleeding from either end this is a potential life threatening situation (my hubby almost died from a massive variceal bleed in April 2012 and it was only quick medical intervention that prevented that). Any blood loss shouldn't be ignored and is an actual A&E/ER job.

There are numerous alarm bells ringing here that medical intervention is required.

* As regards medical monitoring etc. 6 monthly ultrasound scans and 6 monthly bloods are the protocol for monitoring cirrhosis. Actually getting to see a consultant varies, post covid things have gone a bit haywire, my hubby has generally been seeing his consultant on a yearly basis previously it was meant to be 6 monthly.

Katie

[AS-Support in reply to AyrshireK]

Thank you Katie.

I asked her yesterday when she had tummy issues if she needed a doctor. I also said how much longer do we give it, before we contact a doctor when she said no in the first instance.

I felt that she wasn't coping with us being away because I could tell when she had been drinking and was ducking my calls at the weekends. I offered to bring her out and she snapped out of that (from what I could see), I hoped it had given her something to look forward to. I was very very concerned about her health as mentioned which is why I asked her to see a doctor before flying, insurance checks etc.

She has eaten substantially more today than in previous days.

[AyrshireK]

Symptoms of cirrhosis are listed on BLT page at:- britishlivertrust.org.uk/in...

You haven't said where in the world you are, in the UK we have an organization called Al-anon ( al-anonuk.org.uk/ )which actually gives advice to people who are affected by a loved ones drinking and they might have information on how you can broach topics.

Katie

[juneblue]

You said she didn’t have alcohol with her. Alcoholics can be sneaky, I know I was. ( master manipulators). I wish many more people would have intervened in my situation. I believe that now is the time to have that conversation. I know the decision to quit is theirs but by voicing your concerns and trying to help might help give them and you direction. Try to not be judgmental, Alcoholism is a disease. Many people are ignorant about the disease. I rarely drank for fun. Most of the time I hated it. I was self medicating. Alcoholism is an extremely complex disease and just like liver disease affects everyone differently.

I haven’t drank for 10 months now and am living with a fully compensated damaged liver. Feel great.

Your loved one may have a chance to recover enough to live a healthier life but if she doesn’t quit alcohol she will die soon. She needs to hear that. I know I did. Let her know you love her and will offer what ever support she needs. God Bless.