My husband has developed HE and was recently hospitalised. We were told it was mild and grade 1 when he went in, he was very unsteady on his feet and was confused and slurring his words. He has been out of hospital for nearly two weeks and to be honest I can't see any improvement and his mobility is worse. His Lactulose dose has been increased but after seeing the doctor this morning she is still concerned. Has anyone else experienced this, I know each case is different but am interested in peoples experience with HE, really what to expect with regards to recovery between episodes and if they have had any support once discharged from hospital in the community or are you really on your own as a carer to deal with it.
Thanks
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JDA69
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Has he not been prescribed RIFAXIMIN along with his lactulose? It is more normal now to have these two therapies in conjunction. My hubby also has mild HE and it has never gotten any worse since starting Rifaximin in 2014. He still has confusion issues and such like but hasn't got worse.
If he isn't on this medicine yet you might want to ask about it. This was first prescribed to hubby at liver unit and then continued on repeat via GP.
Thanks Katie, I asked the GP about Rifaximin this morning because I had read that these two were used in conjunction. As she is not a liver specialist she is going to talk to his consultant because she is as concerned as I am about the lack of improvement. Fingers crossed we get some answers and hopefully see some improvement. Everything else I can pretty much deal with but watching him suffer like this when he was doing so well is quite tough and really upsetting for him.
Thanks, the link works but the passport won't open as the link on the site doesn't appear to work. Would it be possible to email it via private message? Really great that there is a patient alert card!
The passport aims to help you keep track of important information related to the condition and includes a ‘patient alert card’ that can be kept in the wallet so that Healthcare Professionals are aware of the condition and do not think it is caused by other factors.
regards
Hi, my husband was also prescribed RIFAXIMIN, also by liver specialist. It's really important to keep taking Lactulose. My husband has been fine since starting these 2 together.
Hope it gets sorted as I know how scary it is for the career.
Hi there. I had two bouts of HE in 2016. Was immediately put on 25ml lactulose 3 times a day and Rifaximin twice a day. After my second spell I had my lactulose dose adjusted. It was very frightening to be so confused. Once they got my medication right I improved a lot. I still get times where I forget things or maybe get a little muddled but don’t know if that’s HE or just my age 😉
My husband suffered with HE and was on rixfaxmin and still had episode like your husband sounds excally the same and the same symptoms, we found as well as lactose we had to do some enamas, and also found drinking a lot of water a day helped alot. Hope he gets the help you need xx
Hubby suffered with it too, he would be fine one morning go out for the day & go missing when I was at work...scary because he wouldn't answer his phone but he always made it home, I had to out a tracker on his phone. He had an episode on the 3rd day of his to assessment & they put him on a trial drug but for the life of me I can't remember the name of it.. but it was a massive improvement even over the course of the week he was on it prior to the tx
My husband too! Rifaxamin/Xifaxin. My husband is off the lactolose and is doing pretty well on the Xifaxin. I know the drug is very expensive in the US. Fortunately, not, he has maxed out on our deductible and we don't pay anything until the next year. For us, a pill 2x's per day for 30 days is over $2,000.00. Good Luck!!
Wow, poor you Sarena. I would be bankrupt by now if i had to pay that amount. My income doesnt come near that!
Our NHS comes in for a lot of criticism but I don’t pay for any Rifaximin or any of the other tablets i take...(although some ŵould say well I’ve paid into National Insurance all my 40 odd years when i worked.
Also very lucky re transplant. I was told it cost the NHS £350,000! Yoiks!
Thank you for all your responses. Things have moved on slightly since my original post, the doctor ran some more blood tests and he was admitted into hospital with dangerously high blood sugar levels. He has been diagnosed today with Type 1 diabetes so will need insulin from now on. Some of the HE symptoms and the diabetes symptoms are similar so it's hard to say which one has been causing the most problems. The HE has to take a back seat for now while they try and sort out his blood sugars! Never rains but it pours!
Hopefully working on the diabetes will help with some of his issues.
My husband has occasional very light signs of HE. He is on lactulose and I am not sure if it is because we live in the US or if it is his liver doctor's choice but no Rifaximin.
The thing I find most difficult with my husband is trying to get him to eat, since the Lactulose works by binding the ammonia to bowel movements and one needs bulk to have a BM LOL. He is one of those who, if he has a filling breakfast is not interested in lunch and sometimes not much at dinner time.
My Mom had diabetes and she would have issues when her blood sugar got too high or too low, so I really hope this is the issue for your husband and once they have it controlled both of you will see an improvement.
Yoiks! Yes they dont like high BS levels. I am a diabetic was type 2 for 15 years and then HE for 4 years. Now, post transplant I am Type 1. The first time I went for a transplant - aborted when after 8 hours of tests till 3am the doctors said the donor liver wasnt acceptable - my BS was so high i was given infusions of something to drive my BS down because it was too high for the transplant. Blood tests every 30 mins for 8 hours - only the trivial pinprick ones though. Now post transplant i am a Type 1, small price to pay in my case!
Hi JDA69
I think I can relate extremely well with what you are describing. I had encephalopathy for years (4?) and was hospitalised quite a few (!) times the worst being 3 weeks after I blew up like a balloon and could notwalk. In fact for that one my wife was told i wouldn’ t make it. I am glad to say they didn’t tell me and they were wrong yippee.
Symptoms like your husband:-
Balance completely gone. I was sent on a 3 month course at our local hospital - was more about coping with imbalance and techiques to avoid falling over. Well worth it if you have such a facilty. 3 months one day a week with a lovely lunch (I didn’t miss a session, I mean sponge pudding and custard fantastic if a little verboten)
Lactulose - worked at first towards the target I was given of 3 “bowel movements a day”. I mean who chose those words! Anyway lactulose worked at first and then less and less until it, for me, did nothing. In the end i was given these enema bottled stuff to self adminster - charming, sorry!
Symptoms
Yes my wife would say I talked rubbish at times (what’s new lol) between the real bouts of HE. Then I went a year almost normal and then four hospitalisations in 4 months. The last one in an ambulance blue flashing lights siren etc, because it took three people to get me out of bed - I wasn't going anywhere, and I “knewww nottthing” as Manuel would say. When my son came to see me I called him Rusty, apparently ( I still knew nothing), our dogs name!
Worst occurence;- started a 3 week cruise as a 40 years married celebration. First night major episode and I was out of it for two nights. Had to leave cruise. I was popular - not!
Right, ill try now to look on the Very bright side. 6 months ago I got sent to the QE hospital in Birmingham liver transplant hospital centre of excellence, training hospital,etc. Wow were they good! After many many tests they obviously knew my liver was ummm not good and CT scan found a blockage in the liver portal vein - too technical for me!
Anyhow 3 months ago i got on THE list and had transplant 4 weeks ago, I already feel like a new person and can manage 400m slow walk. Before op I could only do about 20m!
So trying now to correlate with your husbands problems bearing in mind I still have problems due mainly to the anti rejection tablets i have to take but it is rumouted I might be able to drive again in 3 months yippie.
Support at home between episodes - hate to say it but my poor wife has to provide the only support i get/got. Best of luck - i hope he isnt as obnoxious as I got at times, i was/am always wanting to be driven everywhere!
Confusion - Absolutely. Obvious when there’s an episode but in between when I thought I was OK apparently I often wasn’t!!
Memory - how is his memory? I couldn’t remember, and still don’t.... (doctors say it is side effect of new medicines and will get better. Now, where was I. 😀.)... remember things from day to day, and sometimes hour to hour. My wife always has to come to clinics etc with me because i’ve forgotten 50% of what i’m told before I leave the hospital. Everything, everything has to go in my diary.
Sleepiness? Any issues. Mine was always falling asleep, watching telly, about every 30 minutes, hallucinating, then jerking out of sleep and asking my wife what she thought about what I had said. Pardon, you were asleep well, it was vivid in my tiny brain lol.
So I really dont know anything at all except what I have been through and it sounds like your husband is going through very similar experiences. What can i say, except follow to the letter what doctors say which i am sure you do already.. Try to look on the bright side (here says mMr doom and gloom man - me lol) and even if you get to the point where you are told a transplant is the only way forward (some would say I hope not but for me its been my saving grace) try and not worry too much (ha thats easier said than done) and I’m sure your husband will so appreciate your support. I’m hopeless at showing my appreciation - typical man!
All the best to both of you and I hope, if you are OK with it, you can keep us informed.
Good luck.
Wow I didnt know i could go on and on and on so much...
Hi again
Just seen aryshirek comment. I agree, i was put on rifaximin, it costs a lot apparently which is why its hard to get. It helped at first im convinced but my liver was too bad to start with im guessing...
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