My partner was diagnosed with cirrhosis earlier this year and the last 3 weeks have been a nightmare! He has had two hospital stays during this time and the thing that frightens me most is the HE. He got up this morning in his underpants, came downstairs, put a pair of work gloves on and picked up the remote control for the tv and a piece of kitchen roll. It's heartbreaking to see him like this - he's so different to the man I know! He was discharged from hospital with a course of steroids which I believe help with the infection causing the HE but he is due to stop taking them in 6 days and I'm terrified he will get worse. Does anyone have any experience similar to this? What happens when the steroids stop?
Thank you in advance x
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Graylings
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Hi, I know exactly how you feel . I experienced the same with my partner some years ago. He was also hospitalised with HE a few times & it's heartbreaking. It reminded me of watching my Dad with Dementia. My partner was prescribed Lactulose....is yours on this.
Hi - thank you for responding and yes, he’s on Lactulose. I can also identify with dementia as my dad also had it. I’m hoping the HE is more temporary 🙏🏻🤞 x
A guy I know who had horrifically bad HE had to take lactulose for many weeks but now he is as good as new and is awaiting a liver transplant. Basically by just looking at him you would never know he is sick. It really does work for an overwhelming majority, but it takes time.
Is he on Rifaximin along with his Lactulose & definitely moving his bowels 3 to 4 times a day? If he's constipated at all the symptoms can become worse. Sometimes a meat free diet also helps reduce the build up of toxins (not protein free as he needs protein - digesting meat can lead to more ammonia accumulating.The BLT has an excellent information page about Hepatic Encephalopathy including a passport type document that helps with monitoring. britishlivertrust.org.uk/in...
If he hasn't seen doctor for a bit and isn't on both lactulose and rifaximin then it would be essential that you flag these symptoms to his medical team.
My hubby has mild HE and his symptoms are fairly tame - it's the sleep disturbance, fatigue and cognitive and memory trouble he has. Sometimes I do worry a bit because 3 of his paternal family (Dad & two aunts) all had dementia too.
I cannot add much more on how to help after Katie’s post. I had H.E. Throughout 2019-2020. It is horrible. It can make one very aggressive too. Sorry you are witnessing the troubles. To add to Katie’s advice, cut the red meat out. Minimise salt and stay away from any of the processed meals and garbage so readily available to us. If your husband has acknowledged he has H.E. it will go a long way to keeping him safe. When it first began for me my nurses were devils, my hospital ward was part of an alien spaceship and my visitors were all under threat of kidnap. I terrified my family even though we laugh about it now. When I realised what H.E. was and how I was a danger to others, when I knew it was kicking in or was in full flow, I would just take to bed. Remain there until it passed, or in more serious occasions had my family take me to the hospital and I would spend some days there recovering and under observation. You may not have that luxury unless your hubby is convinced that he can help you to help him. I do hope you both manage to sort this and wish you both the best for the future.
My hubby on lactulose only goes once a day he takes 150ml lactulose and 2 senakot and rifaximin yesterday we were told he not to drive anymore when we went for his first day transplant assessment .
Think we have spoken before on here, with the regards to driving did your Hubby receive a fit to drive form from the DVLA? Mine did as guess the doctors flagged it as says was from a third party.. We haven't seen the consultant now for over a month and a half & not now till mid July!! (Keeps being cancelled) He/we have never been told he should drive but I do want to ask the question but cant till see the consultant next! I don't think he should be driving as his HE is bad at times! So waiting on the decision I guess from the DVLA on if they want to take his licence.. in the mean time he's free to drive around a loaded weapon! I said he should not but get my head ripped off if I even approve the subject.. I get my head ripped off for even speaking most day now So think its getting worse.. Joy.
We had his first transplant assessment yesterday at Birmingham they told him there that he cant drive with rifaximin so I just presume if ste had an accident while driving he wouldnt be covered if they find out he on that medication. He accepts he cant drive for now which makes it easier for me I dont have a battle on my hands ..I hope you and your hubby see things from the same point and he gets all the support he needs aswell and yourself take care of you to it's a struggle I say it a lot I miss the life we had this is a long road to getting better we started back in oct and still face unknowns ahead good luck with your journey ❤
I believe heavy doses of Lactulose should be prescribed. People with HE are prescribed 60-100g daily. I have Cirrhosis and with that constipation and this is why I’m prescribed Lactulose. Of course you shouldn’t take it without consulting your doctor. If the steroids aren’t working that’s what you need to do. The steroids are for taking inflammation away from the liver. You really do need to consult with his consultant. Lactulose does have side effects too. So you don’t just take it.
Thank you for your response, He has an appointment with his consultant in 3 weeks time - I've no idea how to make contact with him so will have to wait until then,
He takes 15ml 3 times a day - I have some dried figs I've been feeding him to try help in a more natural and easily obtainable way. Thank you for responding - it really helps knowing others are going through the same thing x
You should ask your GP if you can increase his dose ( at 1 stage I was taking 60 mls 3 times a day and twice a day phosphate enemas) it’s very important to get rid of the toxins causing the HE.
My husbands confusion became significantly worse. I took him to the doctor who diagnosed a urine infection. After a couple of days of taking antibiotics he was a lot better.
Get a bottle of Lactulose for a pharmacy, it’s a build of toxins that affect the brain if you don’t have a bowel movement. I had three episodes of HE . I used to ear prunes, they get things moving .
My husband has bouts of HE, in him it manifests similar to dementia and parkinson's, confusion and mobility problems. He is on both rifaximin and lactulose, I am authorised to increase lactulose if he gets either constipated or HE symptoms, currently at least 30ml 3 times a day but mostly 4 times a day, and also docusate, 2 tablets twice a day, possibly plus one extra if necessary, and 2 senna at night. Despite all that he only ever manages 1 bowel movement a day, it took quite a while working with GP and Hospice doctors to get the balance right, after he had a downturn in February.
The consultant put us in touch with the local Hospice right at the start (Jan 21) as he is too old for the transplant he would otherwise need, so his condition is ultimately terminal. The Hospice seems to have quite a lot of 'clout' with GP, district nurses etc, and have been very helpful, even though he is not near the end yet by any means.
In addition to AyrshireK's suggestion of taking a look at our publication on HE, if you would find it useful to talk things over our nurse-led helpline it's open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays).
Hiya. I have been diagnosed with HE. I was severely hallucinating. It's a long story. I now have to take Thiamine tablets plus Lactulose solution. I have Liver Cirrhosis. I had a burst gastric ulcer requiring urgent major surgery & this finally stopped me from drinking myself to death! That happened on Halloween 2020 & I haven't had a drop of alcohol since. The HE I was lucky with because I was seeing serious Vampires, dead friends, convinced myself that my sister had turned my house into a Mental Hospital....... problem is, I actually thought all of it was real & happening. The Consultant at one point told my sis that I may not "come back" from the state I was in. I did. There are some wonderful treatments but with me, it had to start with the will to change
Hi. I developed HE pre transplant. I noticed I was becoming clumsy and forgetful but it was when I started to have weird dreams and one day at an appointment with the liver Dr, I told him I could see wolves prowling around him. He also had a broken leg in plaster (how often does anyone see a Dr in plaster?) so I knew something wasn’t right. He explained HE and I was put on Rifaximin and Lactulose. He told me after 2 weeks on Rifaximin it should stop ( I know everyone has different stages and levels of this dreadful disease). Once I understood what was happening amidst the fog, I kept myself mentally busy every day. Crosswords, reading, as a designer, I couldn’t use all the software anymore as it was too tiring so I drew. I forgot I could do that! I was lucky and it did ease off and the Rifaximin was stopped. I found out about a year later that the wolves were indeed HE but the Dr DID have a broken leg and the cast was real! Good luck with this.
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So think its getting worse.. Joy.
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