Why did I become unresponsive?

[Elvishaslefttheroom]

I have Decompensated liver disease and diabetes and waiting for a liver transplant. I have had multiple stays in hospital due to encephalopathy causing my family great distress. I normally improve after being treated for dehydration, detox and antibiotics. These incidents are getting more frequent despite doing everything possible to prevent them. Unfortunately each time I am a little worse and the latest visit was after I became unconscious during the night and couldn’t be woken. I finally came around 8 hours after entering Resus but I may have been unconscious longer as I don’t know what time it occurred or why. It wasn’t a hypo, my blood sugar was fine and cat scan ruled out a stroke or Tia. It was obviously a result of deteriorating decompensation but the hospital cannot tell me why it has happened and why it was different. More worryingly my wife and I are terrified it may happen again and we don’t know how we can prevent it as we had no warning. We are normally both up frequently during the night, I have to snack frequently and diuretics mean I go the loo frequently. We are both exhausted all of the time but as I didn’t wake that night neither did my wife and she slept through, blissfully unaware I was in trouble. Any info or advice will be much appreciated

[Fibro2021]

Hello. Are you regularly treated for hepatic encephalopathy? Usually, doctors prescribe rifaximin and lactulose. Moreover, the dose of lactulose is selected individually so that there are 2-3 soft stools (not diarrhea) per day.

[Elvishaslefttheroom in reply to Fibro2021]

Hi, thanks for replying, yes I’m on both but it’s happening almost monthly now. Confusion first and then that leads to an inability to pass water despite eating all the right things and drinking plenty of fluids. I am on Rifaximin 550g BD and Lactulose 4 times daily. If I don’t open my bowels at least 2 -3 times a day it starts. I am actually going 5 - 6 times a day but if I try to reduce The Lactulose to 3 daily I end up confused. I became very swollen all over in January and couldn’t even bend my legs, walk or breathe properly after they took me off Spirinolactose, went from 99kg to 117 kg in little over a month. Back on the spiro now and am back down to 95kg. Hospital have been fantastic but each time is different and getting worse and time between is getting shorter.

I’m going on the transplant list once my heart has been checked hopefully live when I next go in March but concerned this latest change may cause further delay.

[Fibro2021 in reply to Elvishaslefttheroom]

Your treatment for hepatic encephalopathy looks right. Hepatic encephalopathy can be caused by bleeding into the digestive tract such as bleeding from enlarged esophageal varices, infection (for example infection of ascitic fluid), violation of the drug treatment regimen, dehydration, electrolyte imbalance, taking certain drugs, especially alcohol, certain sedatives, pain medications (analgesics), or diuretics. Too much protein in food as well as the formation of a large spontaneous portosystemic shunts and general decompensation of liver function may also cause worsening of symptoms. In any case, your doctors need to analyze what may be causing the encephalopathy symptoms to worsen in your case.

[Readlots]

Hi, not liver related, but as you’ve mentioned waking at night and snacking plus diabetes… Do you have a continuous glucose monitor eg a Libre? It might help manage your blood sugars and at least provide you with reassurance about what’s happening overnight. Your wife can even have an Ap on her phone so that she can check your blood glucose while you’re sleeping. Might just rule out one possible cause for the unconsciousness and give you both a bit of reassurance.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Elvishaslefttheroom

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Yellowsydney]

Hi, I can't directly answer your question but if you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, I know there are people in the group that have experienced this.Hilary

[Bellarman]

Sorry to hear about you becoming unresponsive, it's sounds like you could be suffering hepatic encephalopathy also known as (HE), I had that problem for seventeen years before getting my liver transplant in 2018. I see you are on diuretics maybe you suffer fluid retention which I did for most of my liver disease problems so I know what water tablets are like, ur also on antibiotics I'm not sure what but I was on one called Rifaximin 550 it's actually a drug used for getting severe diarrhea in Africa apparently it did go a long way in helping to manage my HE during my time with chronic HE I went completely into a coma twice it happened but for my partner I don't know were I'd have been each time I was out for more than 48hours it's strange both times it happened on a Friday and during the day, I don't what ur liver Consultant has said to you regarding hepatic encephalopathy I don't even know if you've been diagnosed with it but it certainly isn't pretty what so ever, the way my liver team got around the problem eventually was to give me 3 or 4 different types of laxatives because with HE it is all getting rid of the Ammonia build up in the body which goes to the Brain the normal way humans get rid of Ammonia is when they pee which is Urea but with liver problems it can certainly be a problem, don't get me wrong it certainly didn't cure the problem but the amount of times it would happen was less, I think you need to speak to ur Consultant and get real answers and don't be afraid to ask questions one of my Consultants got very cross with me always asking questions but I said my body my questions yes there are people out there that don't want to know what's going on in their bodies that's not me and it should be a wake-up call for some of them, anyway I hope all of that information makes sense and helps some way you need to stay strong that's easier said than done but it helps.