Hepatic Encephalopathy a Hep C and Cirrhosis Nightmare

Hepatic Encephalopathy a Hep C and Cirrhosis Nightmare –  scared hepatic encephalopathyHepatic Encephalopathy – I am going to tell you now that I hate those 2 words. Honestly, they scare the dog water out of me. My own life before I found out that I had Hepatitis C was nothing but a Hepatic Encephalopathy nightmare. I didn’t even know why.

Those are long words, so let’s call it HE for short.   You know by now that I tackle the worst topics with an attitude. This is one that is hard. We are talking about our brain – our ability to think. For now, let’s just break down the why, how, and what in the heck is Hepatic Encephalopathy.

HE is a condition of the brain. It is the result of a liver that is unable to function well enough. There are symptoms you can watch for. Unfortunately, if we have HE, our minds do not always recognize it. Is there a treatment? Yes. We are going to talk about it. This is so painful to write about. If you or a loved one have dealt with it, you know what I mean. We do not want to believe that it is happening to us, but if we do not face it, we cannot be treated for it.

Hepatic Encephalopathy is caused by your body’s inability to process protein. We know that the liver is responsible for food metabolism and filtering our blood. A liver that is cirrhotic is unable to do that effectively, so the toxins circulate and effect our brain.

Symptoms There are symptoms of HE that you can watch for. Some of them may be mild and others more severe. They can fluctuate depending on your diet, lifestyle, and medications.

It starts off with being a little forgetful, or confused.

You may have problems with sleep patterns.

You find it hard to concentrate.

You can feel uncoordinated.

hepatic Encephalopathy dizzy
No more swinging from the high bar!

I did not trust my own instincts at times. I would take naps during the day to make up for lack of sleeping at night. Many times, I was childlike and silly. It can seem like you are drunk. I was forgetful and had to write everything down. Most of these can also just be part of the aging process. But with liver damage, it is an indication of something much more serious.

Getting worse – When I complained of all these symptoms before my diagnosis, my doctor prescribed antidepressants and sleeping pills. We kept taking the dose up and adding more. I know now that it only made my condition worse. My book basket beside my bed was full of magazines with shorter stories instead of the books that I had always read. Instead of trying a new lesson plan, I stuck with what was easy for me the last year that I taught before I found out that I had Hepatitis C. The forgetfulness and inability to concentrate should have been a red flag. But in my confusion, I made excuses for the behavior. Depression began to set it in even more.

 I can honestly say that I barely remember the last 2 years before diagnosis.

Motor coordination can be effected. I love video games, and yet grew to the point where they were no fun. I quit journaling because of poor handwriting. I fell down a lot. I ran into walls. At one point, I had a huge black eye that covered part of my face that lasted for weeks! I fell off of a horse and dislocated my shoulder. Even sitting in a tree swing with my grandkids made me dizzy beyond belief. The girls thought it was funny and would push me higher!

When my coping skills declined, I experienced anxiety. We all face anxious moments every day, but I was unable to deal with them with my usual strength. I drank extra coffee to stay alert, which increased my nervousness. I would get the jitters, which I blamed on the medications and caffeine.

You may be able to identify with these symptoms. The pattern is clear to me now, but it sure was not at the time. The symptoms come on slowly and we learn to cope with them. We adjust or compensate for the area we are weak. If I had severe confusion and was not able to cope with a situation, I would write it on my computer, and spend time thinking of ways to get through it. Toward the end, I would forget I had a problem. Honestly, those who have HE may live a pretty carefree life at some points. We cannot remember to worry. We can laugh about it, but it is also very sad to us.

My personality began to change. When HE was most prevalent, I was as meek as a lamb and would go along with what anyone else thought was right. Other times, I would assert my opinion in an incoherent manner. Most of the time, nothing really mattered in Karen’s La La-Land. Everything was fine.

I was sleep walking through life. Because I was able to keep up with all of my social and work obligations, no one really questioned me. I laughed a lot. Slept a lot. Stared into space a lot. And took a lot of medications.

My marriage of 32 years failed. Within 6 months, my liver failed. I had varices and needed a blood transfusion along with paracentesis to drain my ascites. I was not in La La Land any more. I was in cirrhosis of the liver land and Hepatic Encephalopathy Land. Because I had dealt with this for a long time, I had learned to use every nutritional trick in the book. That would be my life raft. It still is today.

Treatment – If you have been diagnosed with Hepatic Encephalopathy, you are probably taking Lactulose. It works. It basically binds with the toxins and gets them out of your system fast! Most people who are on it stay close to the bathroom.

Lactulose will get a blog of its’ own. So will Xifaxin and a Hepatic Encephalopathy diet. It took a lot out of me to write this. When I first began reading about it, my brain shut down. My friends and loved ones would give each other a knowing look. It was my signal that my brain was working in loops. Literally – those of us with HE end up talking in circles, walking in circles, and thinking in circles.

We do not have to be afraid of Hepatic Encephalopathy a Hep C and Cirrhosis Nightmare.  It may be a twisted maze of TIPS and taps, lactulose and lala land. But we can use many coping skills, medications, and lifestyle work arounds.

Now that I have broken the ice, I feel more free while talking about HE. It is nothing to be ashamed of. Those of us who have HE have good brains. We just do not have access to all of it all the time. I’m laughing now. When I write to my Best Friends, I do not worry about the spelling and grammar so much. I write from my heart and experience and rest in knowing that you understand!

I have compiled many pages of research and journaled a ton on HE and do plan on writing more blogs about it. Most of my pages are a mess since I have a habit of researching it when I’m zoney. Yikes! I better get to work while my brain is clear this morning. Xoxoxo Loving YOU, Karen:)

Look what else I found for you! 

Encephalopathy Support Group
Ascites and Cirrhosis
Varices Grades, Stages, and treatment
Dopplar Ultrasound for Varices

Pics via thisandthatandtheotherthing.com,

About Karen Hoyt

Karen Hoyt offers a no nonsense approach to living with Cirrhosis. A Hepatitis C treatment survivor, she created a liver loving diet and lifestyle that allows her to create awareness and advocate for her Best Friends at http://www.ihelpc.com

50 thoughts on “Hepatic Encephalopathy a Hep C and Cirrhosis Nightmare

  1. I have been so neglecting my diet lately and it sure shows. Thanks for the reminder, dear friend. I need an occassional kick in the rear to make me remember that I CAN & MUST do better. HE is very scary but I won’t hide!

    1. Cyn – It’s amazing how close we can feel to people we have never met. When I decided on the “Best Friends” as a name for my blog, I never dreamed how much love and sympathy we would share. Knowing that we are not alone when dealing with this helps a lot. I love your story and get a lot of inspiration knowing that you are embracing every day of your life in spite of HE and all the other issues we face.
      I think we all neglect our diet on some days. We sure do hate paying for it with brain fog, liver pain, and HE. I’ll kick you in the rear any time you need it if you promise to do the same right back at me!
      Love you,
      Karen:)

  2. Good morning Karen!

    Tough subject – and for me the scariest. Losing my ability to think worries me the most. I am getting temperamental for no reason, and when I should only be getting a little upset, I get very upset. I don’t know how often it happens but sometimes I don’t realize I am at my stop on the light rail train until I pass it. Thank goodness for online banking. I keep thinking my balance is off but I can look at the account summary and see everything is ok. Sleeping is an adventure. This list goes on and on…..

    I am glad you wrote this article about HE. If anything makes me feel on an island by myself now, it is this condition.

    Lactulose for me wasn’t enough. I have been taking xifaxin. It is incredibly effective. My insurance covers it and I am grateful – it is very expensive.

    Thank you my Friend!!!!!

    1. Joe – We’re in this together. I thought that I was the only one who was afraid. What is great is how we keep using the medications and overcoming the HE. I’ll paddle out to the HE island. If I can find my oars. lol.
      I am just learning about Xifaxin. Thank God for good insurance!!
      xoxo Karen:)

      1. I have HepC, Geno 3, end of stage 3 and trying to get on transplant list, and HE which is somewhat under control now with diet of healthy food and lactulose. Symptoms described here is me. Broke my wrist twice falling down. I woke in a rehab from hospital not knowing how I got there. Shakes, “fog”, severe pain, itching, depression, failing eyes, “what day is it?”. But, worst of all is my fear of dying alone. sister. So, not matter how bad you have it. If you have friendS and family , life is worth fighting for.

        1. Glenn,

          I haven’t seen you around in a while and then got to cleaning up the website and found this. Yes dear heart, it is worth fighting for. But I need to know how you are doing. I’m all weepy today. It’s rainging and I haven’t heard from you. Yes, we fear dying along. Please let me know you’re ok.
          xo Karen:)

      2. I have HepC, Geno 3, end of stage 3 and trying to get on transplant list, and HE which is somewhat under control now with diet of healthy food and lactulose. Symptoms described here is me. Broke my wrist twice falling down. I woke in a rehab from hospital not knowing how I got there. Shakes, “fog”, severe pain, itching, depression, failing eyes, “what day is it?”. But, worst of all is my fear of dying alone. No one comes near in caring except my mom and sister. So, not matter how bad you have it, if you have friendS and family , life is worth fighting for.

        1. Hello, my name is Dee, I have been helping Karen with her page since her liver transplant back in April. While she is doing very well she is still recovering. I am sorry that through my ignorance I did not see this post from you from so long ago. I am so sorry to hear that your HE got out of control. If you have problems taking it you could always take it on a full stomach which is what I did while I had HCV.
          Karen does have friends however I think to have friends you have to try to get out there. She was lucky, she was a school teacher so knew a lot of people. It is never too late to have friends. Going to church is a good place to start. If you can’t get out there is a wonderful site called MedHelp. This site has 14 million anonymous people on it every month. Any illness or problem you can think of is there for you. People are knowledgeable kind caring loving. It is just a suggestion. Another place to go and I am going as soon as I recover from back surgery is to volunteer with the elderly or children in my area. There are many places to go. There are dart leagues or if you are able bowling leagues just looking for people. Playing pool, etc. I am just coming up with this off the top of my head. There are disabled children who need help. These are things I am going to do. I just wanted to apologize for your post languishing here. I sincerely apologize for not seeing this before today. If you are still around, please write back, Dee p.s. don’t know what you will think of this but I take L’Tyrosine when I read that interferon can reduce our “feel good” chemicals in our brain. I wish you the best and hope this reaches you. Dee

      3. I have HepC, Geno 3, end of stage 3 and trying to get on transplant list, and HE which is somewhat under control now with diet of healthy food and lactulose. Symptoms described here is me. Worst of all is my fear of dying alone. So, no matter how bad you have it, if you have friendS and family , life is worth fighting for.

        1. Dear Glenn,

          Your life is worth fighting for. I am so relieved that you are keeping things under control with diet and lactulose. HE is so hard to endure. I know you must be very strong to maintain your mental state and stay strong. Bravo to you!

          Dying alone. It is a subject that we all think of. Not a happy one. I am glad that you have family who stay close. I saw that you resubmitted your comment and you mentioned your sister and mother. God bless them. A mother’s love is something wonderful. She is an angel for watching over you.

          You must know that many others are battling the same thing. Most do not comment here, but privately. It is hard to answer every email. I am glad that you were brave enough to write and let others see your courage.

          Please stay in touch,
          xoxoxo Karen:)

  3. Karen I too have experienced the nightmare of HE. For 2 years I thought that I was going out of my mind. The people around me didn’t know what to expect.
    I consider myself a strong women who had learned to make the best of a bad situation, but this put me down.
    Emotional rollercoaster, beyond forgetfulness, lack of coordination, I too fell several times and got a concussion that was pretty severe. (that made matters worse)
    I cried when I couldn’t even read a short story. I loved to read.
    I started withdrawing from everything because I couldn’t deal with the slightest of problems.
    I too was put on anti-depressants.
    I cried a lot.
    I decided to seek a second opinion and Thanks be to God. The very 1st visit he told me I had HE.
    I’m on Xifaxian which is a antibiotic that zeros in on the intestines to kill the bacteria that helps the toxins grow and the Lactulose. Then of course diet being a big part of treatment. There are side effects but minor in compared to HE. If I eat well with plenty of fiber I don’t take the Lactulose as often.
    After fighting for 3 months to get my insurance to cover the Xifaxin $1300.00 month!
    I’ve been on treatment for about 8 months I notice a BIG change. Still can’t read very long or retain what I read, can’t add in my head, or remember phone numbers hardly, but much better by far. Doc said that once toxins have damaged brain cells they are not always replaced. I can work with that.
    You are right, now that I can look back things were building up for a few years without being noticed. I’d never heard of HE before, never anyone mentioning it.
    It is sooo good that you brought up this subject. People may joke about “brain fog” but if it is not treated coma and death are the final results.
    I thank my God that mine didn’t come to that.
    So the more we inform others than maybe others won’t have to suffer so much.
    You are a blessing to others thank you for being here.

    1. Lillian,
      Thank you for sharing your experience. It is easy to feel alone in this. I was told about the brain cell loss while in the hospital with high ammonia levels. I tried to research it, but got so afraid that I just took the lactulose shoved it to the back of my mind. I’ve seen someone one in a hepatic coma and never want to go there. I’m crying just reading through your comment. You really understand what it’s like. We have a lot in common.

      I love your statement “I can work with that” because that is exactly the way I approach it. I use every bit of mental strength that I have. Regrets over what I don’t have will never help. Negative thinking kind of paralyzes me.

      I too am better than before treating. I actually see a lot of improvement. Some of my blogs were written while dealing with HE and I kind of cringe. It means everything to me that we are together in this battle. I have no experience with Xifaxin … yet. I need to research some more and may ask you for some help with your experience if you don’t mind.

      You are a strong woman. And your comment is really well written and coherent! Crying again. Tears of happiness for you.

      I think we’re gonna make it.. xoxoxo Karen:)

  4. As I have mentioned elsewhere, I have had the Bizarro symptom version of Hep C. I never loose weight during treatment, my hair doesn’t fall out and people often still say that I look younger than my passport age. I also feel that my memory and mental clarity improved my recent 12 weeks of Incivek. I have a high tolerance for pain.

    In summary, after three decades of chronic Hepatitis C, I suffer from the “he doesn’t look too bad” syndrome. So when I spent much of the last twenty years complaining of sleep disorders, the doctors recommended various expensive and intrusive sleep apnea machines without considering Hep C as the cause. When I complained about weird memory disconnects, lowered intelligence or poor sense of smell they would mumble “he doesn’t look too bad” and think that it all must be in my head — which is of course, completely correct. When I started to complain about shortness of breath five years ago, my family doctor noted “he doesn’t look too bad” before sending me to an asthma respirologist.

    Perhaps I am looking at the world through rear-view Hepatitis-tinted glasses, but I think that almost ALL of these life-altering symptoms were due to Hepatitis / Cirrhosis. But even after going through two rounds of combination therapy, nobody sat me down and explained how these were all related to my chronic Hepatitis C.

    I sometimes wonder how I managed to accomplish as much in my adult life as I have done. My cross-country and round-the-world trips were interrupted by long afternoon naps. During romantic dates I attempted coherence even after drinking a single glass of wine. I fell asleep during job interviews. And I passed university courses by getting 95% on the essay assignments while struggling for 80% on exams that required quick memory recall.

    I am worry about backsliding from my current clear mental state yet hope to keep at least some of that “doesn’t look too bad” appearance.

    1. It is tough for sure when you look better than you feel. I have had to laugh many times at the old story of the tombstone that had “I told you I was sick” carved into it!

      Once you are finished with this treatment, perhaps you will begin to feel so much better. I read about your anemia. This is a time when you might look as bad as you feel!

      It is frustrating when looking back on the years of misdiagnosis. Those aha moments help us to make sense of past situations where we just couldn’t figure out what was wrong! I think that finally understanding it has brought a lot of validation. That makes it possible to go forward. I know that is what you do.

      Take care this week. Maybe some Procrit? xo Karen:)

  5. Hi Karen, finally, I got moved to Washington. A couple of days ago I was talking with a woman at the employment office in an attempt to get into a work program for older workers. She kept telling me how I was over qualified for it. Sadly, I couldn’t tell her I am no longer that person because I miss details and simply don’t “see” the work in front of me. It is as if I’ve become seriously dyslexic. How do you tell such a person that you are mentally impaired due to HE caused by cirrhosis? I don’t know.

    1. Rubye – You’ve moved so far away from me! I hope the transition is smooth. This is a tough one. Truly. Most of the time I work harder and longer to meet a deadline, or finish a task. I’m beginning to see how that little trick is going to wear out fast. We can’t do that over long periods of time.

      Let them know that you have had some health problems and have to take things slower? Tell them that your health condition causes you to require extra time for tasks?

      Rubye hunnyo, I know that you have been very talented in your field. It is hard to even admit these things. Telling the whole truth may be difficult, but it can help you get the right job. Again, this is new territory for us and I feel inept to even write about it.

      We’ll stay in touch. I know how strong you are. Push for what you know is right. xoxoxo Karen:)

  6. Thank you for sharing this with us, Saw it on facebook. I;m dealing with this now, & I find this so hard to explain, or have people close to me understand. I believe this will help! Keep ’em coming!!! Thanks again. Misdiagnosis’s for sure. Seems that word is all that is coming out of my mouth lately, even the Drs. I deal with sem to nor ‘get it’.

    1. Kristine –
      I saw your comment after work. I cooked and had dinner, picked tomatoes. The whole time your words were echoing around in my head.

      “Misdiagnosed”

      You nailed it. No wonder people have a hard time understanding what we’re dealing with. They’ve listened to first one, then another diagnosis. They’re as confused as we are..

      Thank you so much for writing. I’m writing for you, but for me too. We’ve got to try and make sense of this.

      I’m glad to connect with you. Let me know if you need anything. Really.
      xoxo Karen:)

      1. Thank You Karen! Happy to connect with you as well* Thankful you “heard’ me! : ) Just reading that article , I see why people are so misdiagnosed, and most important, I’m adding misunderstood. At least in my world, I highly disagree with the intron-peg treatment. I do understand it does put others in remission. I did it twice, both ways, non responder here. Not only did it break down the rest of me physically, mentally was horrible. Months after i found myself saying:
        I did what? I said what? My family thought i had lost my mind, seriously. Awereness is key here, as we agree. Pro’s and con’s of any treatment with that mixture maybe we can discuss? I worked with the A.L.F., ran the only support group in this area, and had wonderful Drs. cofacilitating. The stigma it carries made it awful hard sometime, as people didn’t want anyone to “know’. The stories I could share.. I will be looking forward to talking with you more. Happy to pump out that Awareness with you!! Also, Thank you! Here for you also if you need anything, always! XoX

        1. Misdiagnosed, misunderstood. All those “mis” words. ARGH!

          I had no idea that you had worked with ALF. You have been through so much and it sounds like your doctors have been so supportive. The decisions we have to make are downright crazy! I am just happy that new meds are in the works for non-responders. Some day?

          Yet in spite of the stigma and the continued health problems, you remain joyful and positive. YOU are the kind of best friend that we all need. I’d truly love a best friends kitchen table conversation with all of us and our stories.

          I’m here for you too girlio. Thank you for your kind and encouraging words.

          xoxoxo Karen:)

  7. OMG Karen, that’s horrible… I hate it when doctor’s want to blame your symptoms on something entirely different and give you a pill then send you on your merry way. That’s so frustrating.

    My heart goes out to you. I can’t even imagine everything that you’ve had to go through before this was even diagnosed and you could get on the right treatment plan.

    I know I say this a lot but man I’m so blessed to have my health. I just can’t imagine having to deal with something as horrible as this but I know that God doesn’t give us more then we can handle. We’re all put on this earth for a reason and I just guess yours is to bring awareness to this horrible disease. Well you’re doing a wonderful job young lady so keep it up.

    Thank you for your honesty and for sharing this with us.

    ~Adrienne

    1. Adrienne – You are so sweet. I just love your heart. The miracle here is that humans have the ability to push through our hardships!

      Life if indeed wonderful, especially with friends like you. I’m all weepy now… I was struggling with my blog and trying to deal with HE. Then you came along and offered such encouragement.

      Yes, anything is possible when we have good support.

      I hope your day is strong. You help so many people!
      xoxo Karen:)

  8. Wow- I know there are alot of diseases out there that I have never heard of and this is one of them. I can’t think of anything more scary then losing the ability to think. Not knowing why your mood is changing.

    I don’t know if this will help, but diet plays an important rule that I think gets overlooked. If you get a chance read the book Super Immunity by Joel Fuhrman and Dr. McDougall disputes major medical treatments. I am a breast cancer survivor and if I relied on just what the doctors suggested I don’t think I would be as healthy as I am today. I go to an acupuncturist and no longer take an medication prescribed or over the counter. I believe in so many of the Chinese herbs. I would try acupuncture, it can’t hurt and it might help.

    1. Thanks for dropping by Arleen – HE is actually a by-product of liver disease and more hard to diagnose with exact numbers. I read a book called Super-Immunity years ago by a Paul Pearsall. I’m making a library run this weekend and will look this new bookup.
      I ended up relying on modern medicine for my cure, but like you believe in healthy diet and lifestyle. The idea of Chinese herbs is a good one. I’m researching herbal supplements now. The liver is picky about processing them so my transplant doc is uber cautious.
      Acupuncture has always intrigued me. I’m going to ask my chiropractor about a practitioner near me. Maybe it’s time. Thanks for the encouragement!
      I love reading your blogs and am happy you visited mine!
      Karen:)

  9. Karen, I love reading your blog. So straight forward and personal. As you know, I also struggle with HE and it does scare me senseless sometimes. I also have the lactulose but have a hard time taking it. It is really awful! I have started taking the Xifaxin too.
    Too soon to see results yet.

    I just stare into space sometimes and just can’t remember what I was thinking. Makes one feel very alone and helpless.

    Glad I found you so I don’t feel so alone with this. Because, I look ok. LOL
    Debbie (hepcwoman@gmail.com) recently posted…Staying Positive when fighting Hep CMy Profile

    1. Debbie –
      I love to see that you are still telling your story of surviving. We are stronger together, aren’t we? I have not had any experience with the Xifaxin, but lactulose.. yes. I hope you get positive results from the combo. I’ve heard some good stuff!

      It is so very very frustrating. I had a day like that today. It takes enormous effort just to stay focused at work. Thankfully, I am teaching subjects that are memorized in my heart and also very dear to me. The passion keeps it fresh.

      Then I get home and am zoney girl. Yep. It is a lonely and helpless feeling. And I read your post. And then I get teary eyed. Sigh. We’re not along hunnyo.

      Thank you for sharing,
      xoxo Karen:)

    1. Susan Z. –

      It is always wonderful to hear from you. We’ve been through so much. Of course it is easier looking back. Things start to make sense. This is my most dreaded topic right now. It is for many of us. What a wonderful world we live in with medications to help us get through HE. I keep my Lactulose handy, but am currently not using any. I run a tight ship with my diet.

      The greatest part is that we can survive this too. We can keep our mental faculties to the best of our ability. The trick is to have someone who loves us enough to tell us gently when we need help.

      My best to you as always,
      xoxo Karen:)

  10. With the lovely Lactulose and finally after multiple comas, hospital stays, helicopter flights…..in Denver a dr. used the word HE with me. Nobody had. I googled it, I had been giving at least 3 of my personal specialists and PCP my exact symptoms, not to count the professionals in and out of my assorted hospital rooms. I remember so little of last summer and the fall.

    I told a few friends, I am so sorry all the time. I felt like I was losing my mind so badly that I just had to say it. I had no other excuse or reason for why I had no follow through, or wouldn’t answer the phone for days on end and become irritated with good friends who would call repeatedly. All I would think was TAKE THE HINT, I DON’T WANNA TALK!

    HE was such a rocky road. I hurt my parents and my kids. When I get it mildly now I can pre-tell them. Still my mom is not coping well with it. I let her know about 6 weeks ago I was lucid, I had increased the lactulose intake and had my pills on time. But was still drifting into HE land. I had mild hallucinations, they were pleasant though. My little dogs were back with me. I also saw red writing on the walls throughout the house. I knew that it was not real. I felt still looked at like a person who they just disdained and I regretted opening up. I just didn’t want it to get out of control (they all know first I wasn’t even realizing anything when it was very bad) and then I regretted telling them. Dishonesty didn’t work but honesty didn’t either. I felt very isolated. HE is scary and with all the boring classes of procedures, they should hold one for caregivers and families about dealing with the HE. It is embarrassing.
    holly

    1. Holly,

      Maybe I’m just tired tonight, but your words really touched me. I’m weepy. It IS embarrassing. It is so darn frustrating to lose you mind, literally. I honestly feel like a lot was stolen from me with HE. I am getting along fine, but the loss before my diagnosis was dreadfully sad. At least NOW we know what is wrong and can try and help others understand.

      I did the exact same thing – I withdrew. I didn’t know why either. It was just easier being alone and thinking my simple little thoughts. I didn’t have to explain myself, you know? Our loved ones DO suffer. We tried to laugh about it later, but there was some damage done in relationships for sure. It sounds like you did what I did – talk about it. At least now, our family can understand that it’s not us, it’s the HE.

      I’m thinking about the I’m sorry part. It just doesn’t seem right that we have to apologize for something we can’t help. That can leave us with a feeling of being “less than” if you know what I mean. I realize that our friends and loved ones may need to be reminded of why we are acting or speaking a certain way. But I hope we never get to the point of feeling like we are a burden. You’ve given me a lot to think about.

      I’ve had a gimpy hand and am typing very little. But when I saw your comment, I couldn’t wait to connect with you. We need each other through these times dear one. I’m thinking maybe a video blog about HE. It may be a comedy.. you know what I mean? Haha! We def have to keep our sense of humor.

      Much love to you and I’m so very happy you dropped by to comment. Stay in touch. ok?
      xoxo Karen:)

      1. Definitely on the HE video. We must keep some sense of humor, I do believe I have kept mine. My stressed out friends sometimes tease me about being ‘awful’. Had a quiet day today but will have a busy weekend. I think after our little Nancy FosterQueen Mother leaves the nursing home I am going to keep going back. One really cranky old lady is always dressed up sitting in the hall, she IS GOING TO BE MY FRIEND. lol. Like it or not.
        Your words, everyone’s stories on the Inspire.com site are so real. I look back and I had all those moments, the good, the bad & the ugly ones. I lived nearly all of them at one point.
        I don’t know how I missed these great groups I just found. Too much FB too little looking for others in same spot. Way too much Bejeweled for sure. I use WebMD a lot and found the community section on there the other day and since then it was like a huge windfall of a great community of wonderful people.
        I love the Best Friend idea because that was what I had thought, I made 100 new best friends this week.
        xoxo, h

        1. Holly,
          What great words to wake up to. You’re cracking me up at the thought of of the nursing home. I’ll join you and your cranky lady. We’ll have her up and smiling in no time. I’ll be the one with the crooked lipstick trying to dance. haha.
          For REAL, best friends who’ve been there are absolutely priceless. Nobody else really gets it. I’ve made so many friends since my diagnosis and am still amazed. Every single day of my life now, I know that there is someone that I can reach out to who would hold my hand and my heart with absolute trust. Some of them are cheerleaders, some will coach me, others will simply let me know that they are thinking of me. I do the same for each one. It’s funny how I even tell my family stories about what they’re going through. It’s like our lives are permanently entwined.
          Dear Holly – I hope you have a marvelous day and feel so very loved. Why do I cry when my heart is so full? Maybe another symptom? haha. I’ll get the video thing working on the HE one. I don’t look pretty when I cry though! There is a saying about friends tears. I forget it. 🙂 But all of our tears mingle together and are a sign of our love and determination! Have a wonderful day!!!!!
          Much love,
          xoxo Karen:)

          1. You have a great day too! I bet your school kiddos love you to death 🙂 I have a great support group of friends that check on me, my FB page had a special group page made while I was in a HE coma. I hadn’t been public about it, so I was basically outed and found out that I have a great support network of some people I would have never told. The Best Friends and Inspire Groups are so wonderful. The support comes with so much love from people that you haven’t met that a stranger is a best friend in seconds and they truly understand. Hearing the HE understood by those affected and from the people that have to watch it helped tremendously.

            Your hand yoga for cramps video is very helpful too. I haven’t had cramps in a long time and last week has excruciating cramps in hands and feet/legs. My thumbs were pulled inward and middle fingers on both hands. Physically trying to rub them back into place to watch them snap back. I hope you have a good hand day, have you thought about acupuncture?

          2. Holly,
            There you are! I’m getting caught up on comments now that my hand is healing some. I came over to see you on inspire. YES! Support groups are amazing. I know we all need to hear a word of encouragement when we’re tired and sick. I need to look up your FB page. You have been through it. My dad had an HE coma for weeks.
            It’s an emotional connection we feel with each other. I’m weepy right now just writing to you. The love and acceptance is so healing. I’m so happy that we connected through the site dear Holly.
            BTW – I’ve been cramping a lot lately too. I’m trying more water. It’s that double edged sword with ascites threat, huh? The hands hurt less than the legs and feet, but it’s just awful no matter where they are, especially at night.
            All my love to you dear one. I hope you dream sweet dreams – and no HE nightmares, kk?
            xoxo Karen:)

  11. Thank you for sharing your experiences. i started battling HE a couple years ago. I had NO clue what was wrong with me you could look at papers i signed each month and it looked like someone else had signed them. i slept constantly and my fluid was crazy but not enough to do a drain. I have been battling it again and i feel it coming on the pain in my legs that makes me feel like i can barely lift them falling up and down stairs, unable to think straight and please do not ask me to do math.
    I am constantly in and out of ER and they look at me like i am nuts.

    I have had friends stop talking too me because of my mood swings and i have to wonder constantly how many more will leave and was the mood swings what did it or did they just not feel they could stick it out with me this sick.That then makes me feel even more alone.
    The diet the doctor wants me to try along with supplements are just not financially possible so i try as best i can
    Sometimes i just want it t go away the pan is horrible I am on pain management but the meds i take are not helping and they do not wish too
    offer a change
    Anyway THANKS for sharing i share this with friends in hopes it will help them understand and maybe stay with me

    1. April,

      It is the absolutely the pits to lose your control of thoughts like that. I’m so sorry that youare suffering with this. You bring up MANY good points. It is hard to take care of our business paperwork, fatigue, and emotions. Then our friends and family just don’t know what to do with us.

      Getting your family and friends on board and helping them to understand is hard. I saw an old friend at church last Sunday and grabbed her in the bathroom n hugged her crying. A few years ago, I had full blown HE and our friendship faded. I barely remember it, but I know that I felt judged by her. She was very kind. I asked her to look up HE on the internet. If everyone would read a list of the causes and symptoms, they would understand.

      I hope more people will become educated about it, including your friends. Have you asked about getting help with food? I actually got 6 months of food stamps when I was first diagnosed. I missed a Cobra payment and lost insurance due to HE. I was able to buy the food that helped me to clear my brain a bit. Please get all the help you can.

      Much love and thank you for your kind words,
      xo Karen:)

  12. Karen, I just found your website. I am suffering with HE. At this very moment I am battling a bad episode of it. I am searching for help to managing this terrible disease. I’ve only been diagnosed with this for about 7 months but my flare ups are more frequent and more severe now. I’ve just about given up sometimes but I know I want to live and be around to see grandkids someday. Ive been reading the comments and am uplifted. /Two days ago I joined an online support group and was very surprised to see soooo many others in my shape. It’s encouraging to actually speak to someone who knows what the heck HE is. I hope you get this comment and respond. Thank you so much for your help. I hope you are having a good day!….Tonya

    1. Hi Tonya!

      Sorry to be so late. You can see from my new blog that I’m dealing with cancer now! We have so much to deal with don’t we?

      I’m super happy that you found a support group! I also have many fb friends on an HE forum. I hope you find it. It’s closed, private, and have caring administators who live with it also.

      Do not give up. Get some medication. It takes time to learn how to dose it, but your doctor can help. You will have a much much clearer mind!!! We WILL be around to help raise those grandkids. I’ve taken a lot of kidding about some of my HE episodes from mine. I want them to see it as part of my life and something to laugh at rather than pity me. You know?

      Blessings to your future dear friend. Thank you,
      Karen:)

  13. Hi Karen
    I was diagnosed with hep c a few weeks ago. I’m 50 years old and have probably had it for over 30 years. I have been dealing with the brain fog for a while. It has gotten really bad this last year. I have no treatment plan yet. I am waiting to get my insurance back, after recently returning to work. I try to watch what I eat and take vitamins, it seems to help. I had a couple of pretty good weeks, then the last 2 days I have felt like death. Your site and others have taught me what little I know to help me deal with this disease. I do not know anyone personally that has had hep c and am not comfortable talking to people in my area. I live in a small community and work with the public, so I don’t think folks here would be supportive. Looks like you have been through just about every phase of this horrible disease.
    Thank you for sharing your information and for being such an inspiration!

    1. Hay bestie,

      I’m really glad you found the site. It’s such a shocker to find out, isn’t it? You’re doing the smart thing in getting insurance. But the Number 1 thing is the good nutrition. Nothing will support your body – and your brain better than good food. That is what is going to keep you strong til you can get rid of the virus.

      I hope you have a good doctor you can trust and who will get you the tests and meds you need. Yes, I’ve been through just about everything. I don’t know it all and learn something new every day. But my news for you is that if I can make it, you can too. I hope to see you on some facebook forums too. There is a lot of support there! You’re not alone.
      xo Karen:)

  14. My name is Chris and I am 29 years old, I’ve had HE for quite awhile, cause by 10 years of being Hep. C positive. The only thing that takes the pain away for me is heroin, or other narcotic painkillers, which somewhat increases the fog, but makes me not even care, and puts me in a better mood, but the mood swings are still there. I, too was extra glad to find this site, I can’t believe I found other people going through what I am. I first noticed my HE getting bad when I went to prison this last time to serve out a year sentence which was actually a blessing in disguise because it was super easy to do things in there and almost forget about the outside from all the brain fog. Anyway, it really gave me courage and strength reading all your stories, thank you for the stories of hope.

    1. Hi Chris,

      You’re so young and have so much life ahead of you! Have you been able to find a way to treat? The new drugs can wipe out the virus and give you your brain back! Even though I live with end stage cirrhosis, I have so much more energy since I got rid of the virus. I think you will be surprised.

      I’m glad that you found some hope on the site. You are not alone in this. Many people have HCV and HE and are fighting to get their lives back. Mood swings and depression can take a toll on you. It’s easy to feel crazy or helpless. I hear some strength in your writing. You are not the kind of person to take things lying down. Thanks for dropping by and for the comment. I hope that you continue to grow and be in health in the coming year.

      Much love,
      xo Karen:)

  15. As many of you probably know, probiotics might be helpful for hepatic encephalopathy and cirrhosis. I take Nature’s Way Reuteri superior probiotic occasionally. It also has a few other strains. Probiotics have actually increased my liver pain at times, apparently by speeding up digestion. I guess it depends on how my liver is feeling. Sadly, I don’t have the support I need and my total situation is so difficult. If you are alone, you are not the only one who is alone. I am getting a headache typing this. Dee, please don’t respond, it’s not necessary. I just mainly wanted to mention about probiotics. Search, probiotics hepatic encephalopathy.

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