My personal experience with hepatic encephalopathy or HE began a few years before I was even diagnosed. It was easy to see that I slept too much. I was even napping at work before driving home. Frequently, I would sleep on the side of the road. The lack of sleep at night, led to dozing off during the day. It had gotten so bad, that I even took myself to the emergency room for it. Twice!
I’m pretty sure that I sounded like a nut. Still, literally no one in the emergency room even addressed the real issue. I jumped up and down off the exam table waving my arms ranting about all the assortment of symptoms. The complaints were both physical and mental. My leg cramps lasted for hours at times, and during the whole episode, my heart would be racing sky high.
I Sound like a Lunatic
Honestly, I rambled to the lab techs and nurse assistants like a loon about all the other times my heart would race. Did my heart racing cause anxiety or did my anxiety cause my heart to race? “Wouldn’t you be upset if your heart races when you smell heavy perfumes?”, I asked the young resident at our small rural hospital.
I also tried to explain to the doctor about the grogginess took over when my family came over for pot roast on Sundays. I raised my shirt, exposing my ribs and complained about the gravy making my ribs hurt. Then I regaled them with my story about making my amazing cinnamon rolls. After all these years, I forgot the 2nd rising and then burst into tears in front of guests. I’m sure the hospital staff thought, “Geez lady, you just sound a little crazy to me.”
Another incident from that pre-diagnosis time haunts me. An animal abuse story came on the news one night, and I couldn’t change the station quickly enough. I threw the remote across the room, putting a dent in the sheetrock. Then I got in my car and drove around for hours grieving those poor puppies. What was I doing driving around? It wasn’t safe for me to be napping in the car on a dark busy highway.
Organ Failure – Hepatic Encephalopathy
Yes, I confessed to these doctors that I had been sleeping on the side of the road. Then I would be awake all night worrying about that. I don’t remember clearly what they said. To be honest, I may have gone to that ER more than twice, and for different reasons. I have to wonder if the diagnosis that they wrote in my chart was hypochondria.
But, if they did blood labs, they must have been inconclusive. There is no lab test for HE that is 100% accurate. Anyway… I must have sounded like an idiot trying to explain what all was going on to the ER doctors, and my family. Every time I saw the dent above the sofa, it made me flinch in shame. How could I have known it was organ failure with hepatic encephalopathy?
Finally, after one emergency room visit, the doctor sent me home with a portable heart monitor. But first they questioned me about depression or anxiety. “YES! I’m anxious and depressed,” I said and added, “I keep waking up on the side of the road. Then my heart starts pounding at 140 beats per minute.” That is enough to make anyone anxious and depressed, right?
The heart monitor showed tachycardia, so I was placed on a beta blocker. More about that and other meds for liver disease here.
Patients need to understand what’s happening
This was all due to liver failure. It had nothing to do with my mental health. I was experiencing double organ failure. I had brain health problems that eventually led to a total mental brain fog. Brain organ failure can lead to a coma when the other organ that is failing is your liver. It’s the story no one is talking about. Liver disease patients get brushed aside and treated like lunatics when what we need is a diagnosis and treatment for Hepatic Encephalopathy.
It took three years of gradually getting worse before my liver and kidneys totally failed. They quit to the point where I had my first varices bleedout and paracentesis. The organ that actually failed waaaay before that was my brain.
I’m currently researching HE. The doctors that make up the American Association for the Study of Liver Disease, AASLD are baffled by it and they are writing and talking all the time. I’m listening so that hopefully, I can help others experience less suffering than what I did. I’ll keep you posted. xo Karen
PS I’d love to hear from you. Would you please say hello and let me know you’re there?
6 thoughts on “Organ Failure: Hepatic Encephalopathy”
Hi hoping you are continuing to do well.
Same with you Dear One. It’s a new year and I hope you are entering it strong. Thank you for staying connected.
xoxo Karen
Hi Karen, hoping you are having a great day. My name is Dan and I was 1st diagnosed with heart failure 3.5 years ago. My Dr was running a thorough exam which included a double scope. After the scope I kept bleeding and ER told us it was normal. Shortly after midnight my wife found me sitting on bed staring at the wall and not responding to her. She called an ambulance and I was arguing with everyone that I did not need to go. At this time I slipped into a coma and flown to Kelowna hospital. I woke up 10 days later and was told that I had fallen into an HE coma. I am now battling liver and heart failure.
You just never know what tomorrow will bring.
I am enjoying your thoughts and research results. Thank you 😎
Good Morning Dan,
What a dramatic way to get the diagnosis. I had that emergency room diagnosis too and it is so shocking. It takes us so long to get our mind wrapped around the truth of it all.
It is NOT normal to bleed after a scope. I hope anyone reading this will know that now. You were bleeding internally. What happens is that we “digest” our own blood during a varices bleed. It makes the ammonia in our blood stream even more dense. It’s a miracle that you’re alive after all of that.
I’m glad you found the site and some kindred spirits who can know that we are NOT alone in this. We can go on and have a bright future. I hope you’re living a healthy liver loving lifestyle now. (and heart loving)
Thank you for taking the time to share. Stay in touch,
xo Karen
Hi there from Manchester, England. This rings a lot of bells for me; I’m laughing as even as I’m typing this I’m getting the letters of the very simple words back to front and having to correct them! Is that to do with HE do you think? My brain has certainly not been behaving itself for a while. Conversation is difficult as I feel as if my thoughts are encrypted and I have to translate them into speech which takes time and then I go blank and can’t remember what I wanted to say anyway. I feel very confused and often get the names of objects wrong. My grandson thinks its hilarious of course! The lack of sleep is very familiar too, but during the night is the only time I feel ‘well’. It’s a shame I live too close to neighbours or I’d be vacuuming at 3 in the morning; I have no energy at all to do it during the day though. I’m sorry you’ve had such a bad time with it. I’m in the early stages, Stage 4 liver disease but I think we have different classifications in the UK..? So I do have cirrhosis but not yet had any ‘events’. I know there’s no stage 5 but I think when you get into the next bit they then also call it 1,2 and 3. I’m not sure. Its confusing. I certainly do feel a lot worse if I’m constipated and I think there’s a link with that and HE. I take Lactulose when I need to, horrible stuff. The National Health Service is in a bit of a mess at the moment and many people are dying from diseases that would and should have been treatable, partly due to lockdown backlog but also underfunding. The death rate overall has gone up massively apparently and liver disease is very oversubscribed, I haven’t had a face to face consultation since before lockdown, just telephone check ups and blood work. I’m fortunate that things are stable but worry for the future. I enjoy your blogs. Take care. Sula.
Sula,
EXACTLY! YES! I have to backspace letters all the time. I’ve been typing for over 50 years. I think it’s HE. I’m reading your list as I write here. Let’s see.
Conversation can be a huge challenge. I’m chatty and have finally given up on trying to get it right the first time. I’m feeling MUCH less alone now. I too go blank. Here’s an example of me talking to hubby whilst cooking last night.
Me: Here, let’s put the potatoes in that round thingy, you know the one that came from when you were a little boy.
Hubby: The orange bowl?
Me: Yes! Bowl and that’s it! OML
I think there is a blog on here about reverse sleep pattern. That is one of the most confusing. You’re almost like a drunk, but there is no sleeping so you get busy. I’ve written, watched hours of television, and even sewn entire projects on the sewing machine.
I”m wondering about your stages and will have to look that up. I think stage 5 is the END over here.
Now, I’m getting to your personal part. I’m so thankful that you’ve had no major events. They can be frightening, but they can also be survived with proper preparation and prevention.
We all have a love/hate relationship with lactulose. It can be a mess. I know that the British Liver Trust has done a lot of work to shed some light on the topic. Do any of the royals have liver disease or have they taken it up as their program? That would be very useful to get funding.
I’m glad to know you and have a lot of fb friends on your side of the pond. Some dear friends in Scotland stay in touch also.
Thanks for chatting with me. I often get emails, but this feels more like a community conversation that is personal.
Sending lots of love and keep me posted,
xoxo Karen
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