my husband, 52 has been an alcoholic for many years, functioning until he wasn’t. Just over 2 years ago he started becoming confused with increasing mobility issues and kept dropping everything. I spoke to the gp several times and they told me if he was refusing to go to hospital there was nothing they could do. Eventually he became so bad I somehow convinced him to attend a&e.. his mobility was so bad I had to buy a wheelchair. Once I got him there I was not prepared to leave until we saw someone despite his bet efforts to convince me otherwise, 8 hours later he was admitted. They carried out lots of tests and he was Covid positive so they isolated him. After a few days I saw for the first time how horrendous his alcohol withdrawal symptoms were, delusional, paranoid, hallucinating etc he was so bad they put him on DOLS and he remained this way for over 4 weeks, completely out of it. During this time they did every test under the sun and at one point I was told he had cirrhosis but not to worry because there was no as cities or jaundice. He was eventually discharged after 5 weeks and had regained some mobility and was much more himself again. Unfortunately, after a couple of weeks he started drinking again. He remained stable for about 9 months when it all started again. We were still waiting the referral to the liver specialist when he had to be admitted agin with the same symptoms, he was very poorly with with low potassium which they treated and he recovered much more quickly this time. They sent him home with new medication, rifaximin and spirinoctolone. I had suspected for some time he was having episodes of hepatic encephalopathy and after being on this new medication he seemed so much better. I pushed with gp for his liver specialist referral and eventually he got a telephone appointment which I wasn’t included in and he was told to watch out for jaundice and not to worry because the liver is very resilient. Eventually a few months ago he had a fibroscan and and endoscopy, his endoscopy showed likely early PHG but no varices and fibroscan showed fibrosis but not cirrhosis. Since April though he has been having episodes of confusion, poor mobility, lots of falls and unable to hold things. At one gp appointment she recognised his hand flaps as encephalopathy immediately, he was admitted again to hospital and officially diagnosed with HE Grade 2 at this point.. I’ve definitely seen him worse than grade 2 but this is how he was when he was in hospital. I’m just completely confused, I was told he had cirrhosis over 2 years ago, now I’m told it’s fibrosis not cirrhosis but if he has HE then surely that means cirrhosis? The liver specialist told him prior to his HE diagnosis he doesn’t need to be seen for 2 years
I’m sorry this is so long winded .. I just feel so uninformed and finding it difficult to cope
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Smokeyjo1973
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We are sorry to hear of your situation and that you are finding things difficult. If you would find it useful to talk things over, our nurse-led helpline is open Monday 9am to 3pm and Tuesday to Friday 9am to 4pm on 0800 652 7330
hi Smokeyjo I’m sorry to hear what you are going through, must be very hard for you , please reach out to the liver association I have only spoken to them twice but they were so lovely and gave me some good advice. I am an alcoholic been sober 15 years but just been diagnosed with a fatty liver. My liver and spleen did repair within a year. I was on B12 for a long time. It is very hard to give up drinking and harder to stay sober. Withdrawal is very tough . Reach out and get support for your self and information on your husbands diagnosis . I gave up 20 minutes at a time and here I am . I’m not up with the gargon yet but I do feel seeking advice is the way to go
oh my goodness what a terrible story it sounds like you’ve properly been through the mill! And your husband! I ended up in hospital for 6 1/2 weeks about four years ago since then I’ve been in hospital another four times I can go for months without it but then it always seems to creep back in but I’m in the process of starting a new medication, I can’t remember what it’s called, but your doctor can’t prescribe it has to be prescribed by a drug and alcohol clinic so fingers crossed. Everybody talks about fibro scans but to be honest I don’t actually know what one is or if I have actually had one. I have had many scans especially on my liver. Maybe that is what a fibro scan is.? I have cirrhosis , but I guess I’ve been lucky because my Doctors And my consultant I see regularly and I feel they really keep an eye on me. I have scans every 3 to 6 months and that will be the case for the rest of my life apparently, I completely don’t understand why you’re getting told two different things?! I’m very sorry for the stress. It must be causing you both.
thanks for the reply and I’m sorry for what you’re experiencing too. The hardest thing is not knowing all the information, I’m going to call the helpline when I get chance. I’m just watching my husband deteriorate before my eyes, he has no quality of life whatsoever and it’s a massive strain as he needs help with everything and the HE is absolutely horrible
In addition to our helpline, we facilitate a range of virtual support groups for people living with a liver condition (and their families and carers). We have one specifically for HE and one for carers. You can attend any you might find useful.
If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here
Hi Smokeyjo, I am sorry to read your story, it is all so very difficult, especially when we don't know much about the diseases. My hubby has HE his first episode occured after being prescribed spirolactone to reduce his ascites. His body couldn't tolerate the drug. He now has drains to remove the ascites and had no HE until a couple of weeks ago. Hubby's episodes have been nowhere near what you describe, but none the less very frightening to witness. Through the British Liver Trust, I have just found out about a group for HE on Facebook, it has lots of information and chats for both patients and carer's. It is called Hepatic Encephalopathy Support & Awareness group. Maybe this would be of some help to you and your husband.
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Dad has stage 4 cirrhosis
Pale stool but not jaundiced/no cirrhosis
Stage 4 Cirrhosis can be compensated?
Feeling confused
Worried....
