I'm new looking for information/help supporting a family member who was diagnosed with chronic liver cirrhosis

[cyclist11]

The cirrhosis is is due to alcohol use two and a half years ago (stage 3) She has not had any alcohol since, and has been healthy until around two months ago. I have become concerned as there has been rapid weight loss, and some degree of confusion that has not been there since the diagnoses, she has not been drinking, any ideas thoughts would be most welcome.

[Laura009]

Hi, the weightloss could be caused by several things... poor diet... she needs to be eating regularly throughout the day ... even 6 meals, plenty of protein ie fish and lean meats such as chicken plus fruit and veg.

It could also be she is losing muscle, this is all part of cirrhosis. Definately worth her seeing her GP for checks.

Best wishes Laura

[AyrshireK]

Hello, this lady needs to see her consultant - hopefully she is under one and has been having the 6 monthly scans and bloods which are essential for monitoring the condition. It is possible there is some deterioration happening so this needs looking into a.s.a.p. Also, seek the input of a liver specialist dietician as there are specific eating and dietary requirements when the liver starts robbing the body of muscle mass.

Try and see the specialist very soon.

Katie

[cyclist11 in reply to AyrshireK]

thank you so much for the reply an appointment has been made with her consultant for the 21st of this month. She has been monitored half yearly although this appointment has been longer coming through its more like 9 months . I am concerned as she is very depressed. I have made an appointment for her with her GP also.

[Hidden]

I'm so sorry your family member is feeling so rotten but I'm pleased she's got you for support. Support really does help. Could you phone consultant's secretary in the morning to ask if she could be seen asap, mine is brilliant for this and I have Nash with fibrosis not cirrhosis so hopefully she could be seen next week. Please let me know how you get on. Love and hugs to you both Lynne xxxx

[cyclist11 in reply to Hidden]

Thank you so much will try to get her to do that. She is very low at the moment and I think she is scared ! She has delayed the appointment once due to work commitments.

[Hidden in reply to cyclist11]

You are very welcome. Take care, both of you

[ThreeSmiles in reply to cyclist11]

Omg cyclist - if she is confused you need to see someone ASAP. I am not medically qualified in any way but speak from my own experience. My confusion didn’t start until 11 months after I stopped drinking. I put off going to see anyone until it got really bad and then got whisked into Hospital straight away.

I am not saying your family member is anywhere like as bad as I got and indeed may not even have was the Hepatic Encephalitis (HE) that I had. But I think you need to know, you really do. HE is not good 👎. Better safe than sorry.

Please ring or see someone in the medical profession..... 🤞🤞 it’s not serious.

Miles

[Hidden in reply to ThreeSmiles]

Hi ThreeSmiles. I have a question if you don't mind.

When a person has symptoms of that HE, can the Carer expect to face difficulties having them cooperate to be seen? In your case, did you want to be seen about the confusion? Or, in your confusion, did you resist? TIA.

Well wishes to the poster and her family member.

[ThreeSmiles in reply to Hidden]

H CanadaVery

Omg yes, the carer will experience lack of co-operation at times but not at others - that was what I exhibited apparently. Although there was only one real time when I was physically resistant. I can only go on what I was told of course 😕. My wife had rung 999 because the doctors hadn’t rung her back as they had promised and I was a mess...anyway it took three of them to drag me downstairs - well, that was my wife, my SonIL and my daughter - when the ambulance arrived! Apparently I had both arms out holding on at the top of the stairs and resisting as much as I could all the way down the stairs. They did resort in the end to a little bit of pushing me down the stairs - ahem 😀.

Another time when I was in Medical Assessment at the Hospital I was wandering around removing all the posters from the walls. Why would I do that fgs?,! Why didn’t they stop me hmmmmm.

But most other times I did what I was told - so I am told 👍. Honestly during a bad episode you - as the patient - doesn’t know anything that is going on and certainly can’t remember anything afterwards.

[Hidden in reply to ThreeSmiles]

OMG! That sounds terrible! Round 2 then if it happens here. Got husband to be seen at long last - not without a fight. I'll need to dust off my boxing gloves. So, even though everything is calm here now, Cirrhosis symptoms under control, blood levels good, ascites gone for now, …… this HE can appear? You and others were sober for some time before these HE symptoms appeared? With medication, this HE is very manageable?

I think that I would have just let you pull down those posters too...… thank you very much for sharing your experience, Ali.

[ThreeSmiles in reply to Hidden]

Hi again Ali

Sorry - I didn’t mean to paint such a woeful story 👎.

Yes HE can be controlled to an extent depending on how bad things are - liver wise. From reading on here and from part of my own experience HE can be controlled by Lactulose, Rifaximin and then, if things still deteriorate, self administered enemas. I think - well I know - I had got pretty darned bad when I got to that latter stage - but that was just my own particular problem and certainly does not seem to be the case very often - only going on what I have read on here of course!

Oh yes, and I was teetotal for 11 months before HE episodes started. BUT in between episodes, even though I didn’t recognise it, I was not always as coherent, logical or indeed normal ahem as I usually am...of course my normal might not be very normal 😑🙂.

Good luck to you both!

Miles

[davianne in reply to ThreeSmiles]

Crikey Miles, that's awful, your HE was really bad, you poor soul.

I assume it is a lot better now, post TP?

David

[ThreeSmiles in reply to davianne]

Well I did end up in Hospital quite often but hey ho so do lots of others 😕. Wife was relieved when they said next time he has a problem bypass doctors and A&E just bring him straight to Medical Assessment and we’ll know what to do with him!! 😀👍. Love it - well wife certainly did - anything to reduce the stress for her was a big 👍.

Post TP - None at all thank you! The new liver is brilliant- the donor must have been a saint 👍.

[davianne in reply to ThreeSmiles]

That's good to hear Miles👍👍👍

[Hidden]

Hi and welcome cyclist11

You have had some great suggestions from our members already. We would agree and suggest that your family member has a medical review with her liver consultant ASAP.

If you would like a further chat, our nurse led helpline is open Monday to Friday 10am to 3pm on 0800 652 7330

Best wishes

Trust1

[cyclist11 in reply to Hidden]

That is a real help to have a number for the helpline. I feel much better after the advice I have received and that makes me in a much better position to support her. I’m on countdown to her appointment

[Hidden in reply to cyclist11]

We look forward to helpling you if you call.

[Terricotta]

Dear cyclist11, so sorry to hear about your family member. Are they on any medication? What are their eating habits like?