Episode #23 | The Truth of Hepatic Encephalopathy - Liver Disease & Cirrhosis
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- čas přidán 11. 05. 2023
- From Wikipedia, the free encyclopedia:
Hepatic encephalopathy (HE) is an altered level of consciousness as a result of liver failure. Its onset may be gradual or sudden. Other symptoms may include movement problems, changes in mood, or changes in personality. In the advanced stages it can result in a coma.
East TN Liver Disease & Cirrhosis Support
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This is so very familiar. My wife, - all that delusory thought and ornery behavior I've personally witnessed.
It scary as hell. She will not need a transplant however, she's gonna need a double transplant; both her liver AND kidneys are shot. Procedures right and left throughout the week, a virtual laundry list of tests, one IV after the next ... One night they actually called me and asked me to come down cause she was just flipping out. She's been tied down. I had to watch three nurses hold her down while a fourth worked a catheter up into her; screaming for help. "They're trying to kill me" ! It's been months now and still she can't make it to the bathroom. She'll be staring right at you and screaming for you, - looking right at you and having zero idea of who or what you are.
It looks like she's just pining away. Her body has wasted away leaving toothpicks for arms and legs no bigger around than a pencil; I put my hand on her thigh through her blankets, and I was very confused for a-while, - I would have sworn my fingers were wrapped around her arm ! It scared the hell out of me. Eyes blackened, and her head and face look like very fragile transparent paper thin skin stretched over a skull. Absolutely grotesque distension throughout her whole abdomen. Veins sticking out through her stomach. Her once tiny button on her belly - it's horrible, - it looks like protracted guts oozing out, her bellybutton I mean - it is absolutely horrible. Blotches on her body that looks like so many nasty contusions. You just barely touch her and she yells in pain, - the intractable pain is horrendous. They're giving her shots and pills night and day, - I couldn't say whether her profound absence of mind and trouble speaking is the pills, or shots, just her overall condition or if it's the recurrent encephalopathy or what. She is throwing-up ALL of the time. Her eyes have this real icky yellow color. Transfusions and recurrent infections, -
she's finished one regime and she's right back on another. It's just absolute agony to watch all of this every day. Seeing someone you love more than anything in this world suffering like that,
I swear, it's making me crazy. The poor thing. I've never felt so totally helpless.
What can I do ? I feel terribly guilty all the time. Why do I feel responsible ? Like I've done something wrong 😑.
I wish I lived in another country, - people's medical needs are a communal priority. Here, you've got to be rich - there's just something terribly -
terribly wrong somehow about that, - the quality of care (or if you even get any proper care) a citizen gets depends on how much money they have got. People's health comes at a cost ? - There is just something completely perverse about that. I've been abroad, and none of this insane craziness is over there. If you're sick - your health is completely taken care of. But here in the States - I just don't get it. I guess I'm terribly naive, a hopeless fool, or maybe just too damn stupid I don't know. Enough of that. She's been over here in California with me for about a year now, and that whole time save maybe 19 or 20 days or so, - she's been in all of a half dozen different wards. The hospital has sent her twice to a care facility. The place has to send her back to the hospital again and again. The whole thing has been a nightmare.
I've never known any sweeter and selfless person. Life isn't cruel I guess,
it just doesn't care. Sometimes I envy psychopaths who don't.
How do you go on living, when half of yourself is in the care of someone else,
and they die, - they leave you all alone, taking your heart, all your love, and all the memories that made life worth while - all with them ? "You just go on".
No you don't. Not really.
No, - you don't.
Is she still alive ? How much did she drink and for how long?
لقد مات اخي بهذا المرض وكان وحيدا . لا يريد أحدا كم انا حزينة عليه. كان مدمن كحول وكان يعمل في aéronautique كان شخصا ذكيا. الله يرحمه إنه مرض جد صعب وانت شخص قوي الله يباركك
Nick your channel is a wealth of knowledge and benefit to many people. Thank you!
My wife is struggling with alcoholism. I pray for everyone fighting 🙏 Stay strong and keep on keeping on ☮️💚
❤
From one recovering soul to another, thank you for sharing your story.
It's my pleasure! I was so lost when I was diagnosed in many ways. I hope I'm providing content that's helpful to others. 🙂
Hi Nick, you came so close to leaving this world, but you hung on and you made it. I’ve seen your pics on fb…you have come such a long way since then. You look perfectly healthy now. Keep up the good work. I really enjoy your posts. My son was diagnosed with cirrhosis last June, and he is coming up on his 1 year anniversary of sobriety. His health has improved remarkably as well. I think you are here for a reason……to help others. I know how much you are helping me. Thank you for sharing your insights and experiences with us, I can imagine how difficult it must be. But it’s important to get it out there. Liver disease has become so prevalent and it’s affecting people at a much younger age.
You're so kind Elin and my thoughts and encouragement go to both you and your son. Please tell him that I personally said hello and congrats on 1 year! That is such an amazing milestone on many levels. Remind him that a prognosis is NOT a death sentence!!! If there is any other specific experience I've had that you and/or your son would like me to share let me know and I'll work it in somehow or make a video for it. Have a great Mother's Day weekend!
I have a brother who is going through this right now and he’s been like this for a about three weeks but he appears to be getting better and we haven’t lost hope but thank you for this video it gives me a lot of hope to hear your story
Good one. Thanks for sharing 🙏
Thank you so much for your honesty and willingness to share your journey. Much Love 💕
Thank you so much! I just hope that I'm helping someone else that finds himself in that horrible spot.
I appreciate hearing the details. TY
Thanks Prizzy! It's always great hearing from you! I hope you're doing well. 🙂
Wow Nick,That sounds truly terrifying. Great story though,interesting you tell your recollection and what actually happened.We're all pulling for you friend.
Thanks Kevin! I just hope that my experiences are helping others that find themselves in the same awful spot.
Great info thank you
Hello Nick! You’re looking well ❤. Hepatic encephalopathy is very scary. As a Nurse I’ve seen it in real life, the patients are different levels of confusion. The lactulse helps tons. Many hate to take it bc of the loose stools . I cannot even imagine what you went through. We have had patients become aggressive requiring some sedation or restraining and sitters! I hope you never have to experience that again. Stay healthy stay blessed Nick. Big hugs 🤗
BIG hugs to you too Monay! I had a sitter for awhile. Kerri said that when she came in the room I was talking to my sitter who was a second-year med student. I was going through all of the different Specialties in healthcare and telling him exactly what they did, what parts of the body they studied, and what other Specialties they primarily worked with. I have that Knowledge from a previous job I was at for 10 years and she couldn't believe it. She said I listed over 20 Specialties and every single one of them were correct. It's crazy the stuff that we do on autopilot. Especially when we're not present in the moment.
My mother in law is going through this right now. She dont know where she is , pooping her self dont even know her name. It came in fast within 4 days of being admitted. Its scary stuff
You are surely looking healthier and sharper than last time i watched you 2 months ago.
Thanks! I post videos about every 4 days so if you go all the way back to the beginning you can see a slow progression. I just wish my liver looked better instead of the same. 🙂
Thank you so much for all this information. I have a family member who is an alcoholic and refuses to admit it. I truly believe he will soon experience some of the symptoms you describe. I appreciate your courage for sharing all this with us. Tell Carrie she is a saint. ❤ Take care of yourself and thank you. Have a great weekend.
Thank you Laura! You're correct! I'm luckier than any one man deserves. Especially this man.
God help him if he wants to die like this
I have it and I never drink alcohol for 35 years
Thank for the info, the mind can be a scary place...
I suffered badly with HE prior to my transplant. I got to stage 4 and was found in a coma a few times. During one visit to ER I was prescribed Rifixamin. What a game changer that was. So much better than that foul Lactulose.
Roger, can I ask how long you were on the transplant list? Here in Vermont, we are on the list for 5 to 6 years... Thank you ❤
Hello Rebecca, I was on the list for 3 months and finally got my transplant after being sent home twice due to the donor liver not being up to scratch.
I'm in the UK.
@@rogerkeats679 oh, hi and thanks for getting back to me. Yes I'm stage one compensated cirrhosis non alcohol. Due to a fatty liver, insulin resistance, metabolic syndrome. You have to have like a really high bilirubin and other stats that point to liver failure or in the decompensated, stage with high bilirubin and others that they go by, in order to get on the list and then a 5 to 6 year wait. I think that's too long ? I have mild portal hypertension with a couple very small vericie. It itching ,belchy, lots of headaches and of course a lot of very low to feeling depressed. So I'm not sick enough for a transplant. I'm now 64 . It seems that we all end up with something sooner or later. No one gets out alive. It is sad when children die from cancer or other diseases. Us people with cirrhosis are at a much higher risk for liver cancer. I get an ultrasound of my liver every 6 months. It's hard to do, but it's always one day at a time. I hope that you're doing well and that you stay healthy and take good care of yourself.
🙏
@@rogerkeats679 What kind of food did you eat.. Solid or liquid food..
I ate a normal diet. Little and often was the key bit. There wasn't anything that I couldn't eat.
My hubby was never an alcoholic..he had a fatty live that turned to NASH (nonalcoholic cirrhosis of the liver) he is in and out of the hospital because he refuses to take lactulose so his ammonia goes up or they think he has a blockage as when they removed part of his twisted colon and put it back together there is a narrow spot and if his stool get too big it wont pass so back in the hospital for lactulose and lactulose enema..he’s been tied down before as he tries to pull tubes out and when we were driving the other day he went off the road and I hollered for him to get back on the road as it scared me before I knew it he had his hand drawn back to hit me..I said u ever hit me and it’ll be the last thing u do and I asked him why he wanted to hit me and he said because my hollering scared him so instead of jumping because it scared him he wanted to hit me…we’ve been married 43 years and I’m about at my ropes end he’s never raised his hand to me and I cried as I couldn’t believe he would be angry enough at me telling him to get back on the road that he’d want to hit me…I told him “your first response for being g scared was to draw your hand back to hit me” I’ve spent two months around d the clock with him at two hospitals and a rehab..I stuck my hands in his stomach when they left it open to heal from the inside out and I had to doctor him and he wants to hit me and his ammonia was only 87 so not quite high enough for him to be so angry he wants to hit me and he says he’s always right so he has not and will not apologize even though he saw it upset me so bad I cried..I’m at my ropes end dealing with his Dr Jekyll and Mr. Hyde
I'm so sorry you're going through this. It's not fair to anyone involved. My heart hours put to you. I'm sure he is just as frustrated and scared as you are. 💚
Thank you for sharing.
I don't want to become "the guy" who always replies about myself. So after a week of misery all caused by the doctors, forgetting to call and getting my meds wrong, meds not being available, a dental abscess they want give me antibiotics for...I could go on..:) I will wish you all the best. Take care sir and thank you.
Thinking of you NM. I'm sorry you're having so much trouble. You're displaying major strength and courage! I hope your CBD is still helping.
Hi nick thanks for your video. I have just been diagnosed with hepetic encelophy luckily mine is very mild and i would agree that lactulose is disgusting. It must have been horrendous for you and your wife. Your videos have been excellent thanks Karen
Thank you
I'm taking lacalose syrup . It takes toxics out of my blood. 😢 I'm going through the same thing. I was diagnosed with chirros of the liver 8 years ago. Stage 2. I quit all drinking 8 years ago. I have to go to paracentesis twice a week. I know what your going through .😢
My mothers is suffering from this to the extreme. The hospital has sent her home, we are caring from her at home. Any tips or advice is welcome. Lactulose has been advised 3 times a day. The only issue is the side effects
Ps how long does HE go on for? We keep feeding her and making sure she has fluid but it doesn’t seem to be improving
And she’s hasn’t been out of bed for 6 weeks and sleeps so much
And she’s hasn’t been out of bed for 6 weeks and sleeps so much
@@claretowltheestateagentI suffered badly from it and the only thing that truly stopped the HE was my transplant. Rifaximin was a great help though. Better than Lactulose.
I had an ex who was such an alcoholic, and began trying to connect and told me he had to have a liver transplant. He could not drive. I live in Hawaii and he kept telling me he was coming to see me, and seemed confused about really coming. It would have been a very very long trip and I don’t see how he could have done it with how sick he was. I could see him getting combative with family members on Facebook. Just didn’t seem like him at all. Personality changes for sure. He was scaring me. Later I wondered if he had HE. I don’t think he was ever in Hawaii, even though he claimed he was here. Do you think this was HE? (PS. He has since passed away, and the family did not name a cause of death. )
I'm hesitant to say that it was HE because I don't know him personally. However, what you're describing sounds frighteningly similar to symptoms that I had. I was in a completely different reality.
My daughter n law died from liver failure…she was in late stages…she also had what is called wet brain…she hallucinated in the end the brain was so saturated with the ammonia poison…her eyes the pupils were dilated so awful…her stomach was huge with this fluid or poison…they refused her a liver…she died January of 2022…
Thank you so much for sharing that. I can only imagie how scary all of that is for a parent or in law to have to go through. We often times feel helpless which in turn makes us resent ourselves and the entire situation. Though I do not know you if you sound like an incredibly strong person that is there for their family. I hope that you can continue to be the type of person. Have a great night/morning/afternoon! 😊
any other ammonia symptoms ?
Lactulose! Holy Mother of GAWD Bowel Cleanse. What was the other they gave me, in a pill form. Can't remember the name but it wasn't the usual OTC laxative.
Not sure exactly what they else they would have given you but Lactulose is straight from the bowels of HELL!!!
In your videos you say you have no recollection and that you were very unable to do anything, how were you able to deny medical treatment? Shouldn't your partner just have called for medical help?
Such a great question. And oh, how many times I did and have tried to get medical help for Nick and he refused. Basically, if a person can answer a few questions (like what year is it, who's the president, how much money do I have if I have 6 quarters, etc.) and their vitals are stable, they can refuse medical treatment. Think of the movie the Hangover, they have no recollection of the previous night, but they made a lot of decisions and did all kinds of stuff. The body is a mysterious thing. In Nick's case, I just woke up one morning and Nick was talking like a toddler, couldn't hold anything, and didn't know how a toilet worked - but refused to go to the hospital. I was so scared I started crying and he finally went in. My mom put him in a wheelchair and just kept wheeling him around the hospital like they were sight-seeing while I freaked out. I still have nightmares about that whole day. I think that was the moment that Nick really started to fight for his life.