What are the 4 Stages and Symptoms of Cirrhosis

What are the 4 Stages and Symptoms of Cirrhosis

symptoms stage cirrhosis hepatitis
Take center stage and help your liver heal

If you are like me, you did not know diddley squat about the stages of cirrhosis when you were diagnosed. I understood what End Stage meant. The End is pretty easy to figure out. But how in the heck did I get to the end, or stage 4, or End Stage or whatever they called it? What happened before, during and after? If you have even read one of my blogs, you know that I have questions. There is no stopping until I get some answers.

Cirrhosis is basically talked about in 4 stages. There are many different ways that a doctor can assess what stage you are in. You will have blood tests, maybe an MRI, a FibroSURE scan, liver biopsy or perhaps other procedures performed. Your doctor does all of these tests in an attempt to see the liver itself and to see how your body is function in relationship to the liver. I have come to believe that the whole body is run by the liver. Which is true in a way. The liver performs tasks that are amazing! The part that makes me the happiest is that it is the only organ that actually tries to heal itself.

I think of it this way: When you cut your finger, the skin knits itself together to close up the wound. This knitting is what causes scars. Like the ones on your knees and elbows. Each scar represents a story of a bike wreck, a scrape from the sidewalk, or a cut from a tree branch. You can probably remember how you got every scar.

Your bones also tell a story about any breaks that you have had. Calcium and other minerals leave deposits as they repair the damaged bone. They can be seen on X Ray years later.

Your liver tells the story of your life also. If it has been bombarded by the Hepatitis C Virus, overloaded by fatty liver disease, or attacked by your own immune system, it shows up as scars. Drugs and alcohol also put a heavy burden on the liver and damages cells. The scars show up on the various tests that give an actual picture. They also show up in your blood work and in your other organs. Your liver enzymes are raised as they race to fix the damaged cells.

Scarring in the liver is called fibrosis. That is because when the liver is healing itself, it forms collagen bands. Remember how your skin and bones heal? Same thing, different material. In a nutshell, collagen grows and connects and wraps itself around the liver. It also wraps around the portal vein and smaller veins too. Your poor liver does not consider what the scarring will eventually do, it just tries to heal itself.

Stage 1 of Cirrhosis is when your liver is actively inflamed and trying to heal.

What your liver is going through: Basically the liver is destroying itself in its attempt to heal. It begins to show signs of swelling. Some connective tissue may be found the portal vein area. That is also where your main arteries supply blood and where the bile ducts are. There is not a lot of connective tissue at this stage of Cirrhosis. Very little damage has been done, but your liver is definitely feeling some pain from the Hepatitis C Virus or from whatever is attacking it.

stages liver cirrhosis hep c
You can help heal the owy on your liver!

What you are going through: This stage usually has no symptoms. You do not even have a clue that something is wrong. IDK how many times I have wished that Hepatitis C testing were done routinely. But, no use crying over spilled milk. sigh

Stage 2  shows the inflammation, but not a lot of damage.

What the liver is going through: There is a red alert going off in your body telling the liver to work harder. The liver begins to start putting out collagen to try and stop the swelling. It is still working really well. Most of the liver is healthy and normal, and the fibrous bands are mainly around the portal vein area. Your other organs are probably not even affected yet.

What you are going through: At this time, you may have slightly higher liver enzymes in your blood work. I know that mine elevated about 12 years ago and then went back down. It should have been a red flag. Most of us do NOT have any symptoms at this point.

Stage 3 is where the damage is really showing up more.

What the liver is going through: The fibrous bands send out runners that are trying to grab onto or connect with who knows what trying to heal. You may hear the term “bridging” used. I picture it just like a bridge made of white collagen fibers bound up trying to help. The problem is that it does NOT help. The connections are not useful. They can wrap around the arteries and veins. Then the blood supply begins to be shut down. The arteries are pinched off in a way. The liver feels the pressure. It’s job is to filter the blood. What? No blood coming through? Major problems occur and begin to affect other organs. Again, any healthy piece of liver that is left will keep doing it’s job. It compensates for the mess that is being made.

What you are going through: By this time you are feeling it. You may have itchy skin or eczema, hair loss, mental confusion, high and low blood sugar swings, food coma after heavy protein meal, and some swelling.

Stage 4 is considered the last stage.

What the liver is going through: By the time this happens, scar tissue of fibrous bands have zig zagged all through the portal vein system. Even the healthier portions of the liver cannot compensate very well any more. The spleen, gall bladder, and gastrointestinal tract are all feeling the impact. Your liver has passed it’s pain onto the rest of your body. You may hear the term decompensation.

What you are going through: This is where it begins to fall apart for you. You many have mental confusion, brain fog, or hepatitic encephalopathy, yellowing of the eyes and skin called jaundice, reverse sleep pattern, swelling from fluid build-up called ascites, portal hypertension creating varices, and other symptoms. 

stage cirrhosis hepatitis symptomsEnd Stage Liver Disease deserves it’s own blog. And it shall have one eventually. We know what it means. The liver is no longer able to carry out the functions that you need to keep going. You are going through a very hard time mentally, physically, and emotionally. I had that label the minute I was diagnosed with Hepatitis C.

End Stage does not have to mean the end of your life. Saying those words to you is the whole purpose of why I blog. At one time, liver fibrosis reversal was not considered possible. At one time they thought the earth was flat.

Let’s hang in there together as best friends. I am out to prove that there is life with Stage 4 Cirrhosis. You can’t get rid of me that easy. Stick with me. Practice lifestyle and diet changes. We’re going to figure this thing out together. xoxo Karen:)

For more links to Cirrhosis and Hepatitis C articles click here. 

Do you really believe that the liver can heal itself? Are you willing to make changes so that it can?


pics via nlm.nih.gov, livedesignonline.com, weightlossdetective.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

127 thoughts on “What are the 4 Stages and Symptoms of Cirrhosis

  1. Hi Karen,

    Yes, I believe that our body can heal itself by changing our diet. First off, I didn’t know what cirrhosis mean til I read your blog. Thank God that I have immune vaccination against all sorts of Hepatitis. Being a CNA and RT (respiratory therapy) student then, I had to get all my immunizations done before I could work in a hospital. Anyway, thank you for sharing this informative article.

    My question, how did you get healed from cirrhosis? What kind of diet did you have?


    1. Angela,
      I still have end stage cirrhosis. The damage is permanent, but there is hope for reversing some of the fibrosis. What was considered a death sentence is now an invitation to life.

      I have written a lot on a liver loving diet and am try to compile and publish my recipes that helped rid me of the “expiration date” stamped on my foot. lol.

      I too was a CNA and heading toward nursing school. Back then, there were no universal precautions. Hep c was called Non Hep A or B.

      Thanks for your compliment. Truly. Your story of chasing your dreams and learning how to run a website has helped me so much. It has inspired me to keep this little site going.

      Keep up the work! Although our sites are different, I need yours to fuel mine. xoxoxo Karen:)

      1. Karen,
        I am at the stage of transplant and need a care taker, My wife of 24 years walked out on me and with no family I am left to defend for myself. I have a home in Tennessee and willing to share with someone in my same shape. This person would need me for the same reasons who comes up for transplant first the other sees him or her through.
        I am not that computer literate and need all the help I can get. My question for you is, where do I look for this person, what site do I go too? Please if you can tell me where to look on the computer and find a genuine sincere person as I feel I am… Hope you can help for I really have no idea where to look and that’s not saying I have not tried for you can trust that I have. Thanks, Don Smith/ Smyrna, Tn.

        1. Dear Don, your story really has touched me so much. I am Dee, an old friend of Karen’s, she asked me to help her while she recovered from a procedure as well as waiting for her liver transplant. She and I are a lot alike and the biggest attribute we have in common is that
          I have a couple of ideas. One is that I remember my Grandmother could not go home after an operation so she went into rehabilitation.
          She stayed there for a month, from what I remember her health insurance paid for 10 days and medicare paid for 20. I looked up a rehab place in Tennessee and I found this, http://www.vanderbiltstallworthrehab.com/ This may not be convenient to you, I don’t really know the area but I will learn it. If not I will look for other places. Oh…I see you are in Smyrna TN. I will double check information and write to you asap. Hang in there. I believe that everything happens for a reason. I am praying that you can find the help you need. I will keep in touch, Dee

      1. Debbie,

        When I wrote that, it was at the beginning of understanding how my own body worked. Writing and researching have helped me to figure out so many things. Like how to help my body heal and support my liver.

        I think it was painful too. Reading about the earlier stages and wishing there had been more attention paid to warning signs made me angry! But I let go of that too and accept it for what it is now. I like to promote this one again from time to time to be a guide for the newly diagnosed. Our knowledge is what gives us power when we talk to our doctors. It helps us make informed decisions regarding what tests should be done too!

        You’ve blessed me with your sweet words. I hope your week is awesome!
        xo Karen:)

  2. Angela, I just wanted to point out that your statement “Thank God that I have immune vaccination against all sorts of Hepatitis” leads me to think that you believe that you were immunized against Hepatitis C.

    There is no such thing; there is no vaccination for HCV.


    1. Don,

      I’m glad you caught this! You are absolutely right. There is currently NO vaccine against Hepatitis C. I hope someday there will be. That is one of the reasons that even those of us who clear the virus still have to be cautious regarding reinfection. My doctor told me that with the new safety measures in place regarding blood testing for transfusions, it has become much more rare to get.

      Thanks so much for your comment and correction!

  3. My recent diagnosis of Myelofibrosis was devastating. Seeing you & reading your words are exactly what I needed. Thank you Karen!

    1. Tia,

      I read about Myelofibrosis after your post. I got your message about your doctor’s conservative treatment. You are so blessed to be able to have an allied health team you can trust. You said it, it doesn’t matter what illness we are facing, the emotions are the same. We have to grieve some losses and then decide how we will cope.

      Your positive outlook is what will see you through. It’s a day by day process, isn’t it? I’m always here for you, so let me know if you need anything.

      xoxo Karen:)

      1. Hi Karen my name is Elaine and I underwent a Gall Bladder removal on 10 th December 2014 spent the next 4 days in HDU when I eventually was compas mental the consultant said I had the worst liver he had ever seen he described it like a cornflake cake & it was all my own silly fault I don’t know how to work out what stage I’m at & I have to wait another 8/10 weeks for a so called urgent appointment with a Gastro Enterologist no one has explained it to me except to say I have a very bad scarring of the liver please can you email me your food diet for loving your liver & any information that will help me see there is a way through this for me many thanks

        1. Hi Elaine,
          If you will go to the Best Friends Start Here link on the right hand side and click it, there are all of my diet resources. I’m working on a new project for diet specifically that will help with grocery shopping too!
          You’ve come to the right place. Food is medicine and you can turn your life around if you are willing to eat well. I can promise that! It’s been almost 5 years and I am proof that it works.
          Keep me posted and watch for the new diet blog. KK? You’re in my heart.
          xoxo Karen:)

  4. Hello Karen,

    I just happened upon your blog and I am so glad I did. It helps so much to read your posts and to know that I am not alone. I also went through banding, thankfully only once and have had check ups and so far no additional banding is needed. I too am on a beta-blocker. It’s very scary to realize that cirrhosis is a condition I am going to live with, but I realize that the key word is LIVE. I plan to visit your blog often now that I have found it. Thank you Karen, it truly does feel like I found a new friend.

    1. Chrissy,

      I love it that you’re reading around on the blog. Writing about illness is such a solitary thing. Me in my living room. (except right now my computer is down and I’m doing this at school before the bell rings.. lol) It is ALL about connecting with each other. It feels like our body has betrayed us. But with love and care, good nutrition and support, we are doing it. I ate a lot of onions on a burrito last night and had heartburn this morning. That seems like a small thing until you’ve had a banding. I take an acid blocker to help my stomach stay healthy.
      No recent bandings for YOU!! That means the beta blockers are doing their job. What once seemed so scary is now a little less frightening to us. Congratulations on a good bill of health for the varices. I could just hug you right now!
      xoxo I’ll be watching to hear from you soon.

  5. Hi Karen,

    I just ran across this site, and wanted to share. It was more like, I needed to share. I don’t even remember when I was first told I had Non A Non B Hepatitis. I have rarely had health insurance, so I think I was told after donating blood. No one told me that I needed to seek treatment so I just thought the worst of it would be that I could not donate blood anymore. Over the years, off and on, if I was hospitalized or had blood work done, someone might mention that I had hepatitis. I vaguely remember at one point someone told me it was now called Hepatitis C. Again, not 1 person ever told me that I should seek treatment. I finally got on a sliding scale payment program in San Antonio called Care Link, and started to see doctors. My PCP would do bloodwork when I went for an appointment with the flu or something, but other than that no tests were ordered and no regular blood work was done. He told me he was keeping an eye on my numbers for the time being. Still, I was not told by him it could lead to something more serious and treatment was never mentioned. They no longer have my medical records from that time because of lack of space to store them. They were destroyed after 5 years, without notifying anyone they were going to do this. Fast forward to November 2, 2011 exactly 2 years after my mother died. I am at the minor emergency clinic for what I don’t remember, and the doctor I saw casually tells me that I have Cirrhosis. So I went home and started reading because that was all he said. I have now been to 2 Hepatologists through that sliding scale program. My first visit I was told that I could stop taking my vitamins and no treatment was discussed. That first doctor was in a hurry and kept trying to walk out of the room. She did order the test where they go down your throat and look around. They found I had portal hypertension and stage one varices at that time. I had a follow up visit with a wonderful new PCP who started me on Propranolol and Lactulose. That made my Hepatologist mad. On follow up visits with my hepatologists, they kept telling me I could stop taking the Propranolol. When they finally said I was ready to start treatment, I told them I wanted to start treatment there with them with FDA approved drugs, I was told they were sending me to the Texas Liver Institute for a drug study with non FDA approved drugs. There was no study for Hep C and Cirrhosis combined for a while. When I finally started screening for a study for Cirrhosis, the EKG showed I have a heart condition called LBBB. So there went the study. I argued my way back to the Hepatologist to get the FDA approved treatment which includes Interferon. They won’t treat me due to the LBBB. I was told wait for new drugs to get approved. In the meantime, my liver has gone from swollen and enlarged to shrunken and wrinkled. I finally got insurance through obama care, and will see a new hepatologist the 21st of this month at the Texas Transplant Institute Liver Clinic. I don’t need a transplant yet, but can still be seen there. I have no family support to speak of. My daughter recently came on board, but has trouble helping me deal with it so most of it I deal with on my own. I feel thrown away. I can’t hold any more health info in my brain. I think my Prozac and maybe Propranolol contributed to the heart issues, which make me dizzy and always exhausted along with the bad liver. I tell God my life is in His hands. Thank you for letting me share.

    Karen P.

    1. Karen,

      First of all – I love your name.. it means “Pure” and I want to assure you that you are NOT a throw away. It sometimes feels like it when our voice is not heard or respected. Your daughter will have to slowly come to understand your diagnosis. It is so hard on our kids. That is where we learn to trust God for our future. He is faithful.

      I have heard of your heart condition, but did not know that it would be made worse with propanolol. You are in a pickle! I know for a fact that it makes us groggy. I take mine just before bed. The one I use called Nadolol is time released so I do not have to take it during the day. That really helped. I don’t know if you are on a morning dose, but that can really put you back to the bed for the day.

      I have heard good things about the Texas Liver Institute. I had to go through a transplant hospital to treat also. At least now you have a couple of things going your way. You are being seen by a good team of transplant docs who can help you if your liver fails. You can treat and get rid of the virus so your liver will get a break. You have a chance to get insurance which will make good medical care easier to keep!

      All of these things, along with your daughter being in the picture can add up to a hope for a good future! Stick with the Lactulose too! You have come a long way with a lot of hard mountains to climb. I have a feeling that you will get over this one too dear friend.

      Thank you so much for sharing your story. You are NOT alone. I think this will encourage many others to hang in there and hope that they will finally get the break they need too!
      xo Karen:) Stay in touch.

  6. I have a fatty liver that I’ve been working on, losing weight is the main thing but that takes time. My liver enzyme was elevated so my doctor wanted to take a biopsy to see if my liver had any cirrhosis. He gave me three months to get my enzyme down before we started taking drastic measures (I don’t drink and I’m not horribly overweight). I started taking another milk thistle product and it did good, I could feel the pain in my side reducing and I felt more energetic.
    Remus recently posted…What does SGPT/ALT Blood Test Value mean?My Profile

    1. Fatty liver diet is pretty tough to get going. You’re right, it takes some time, but will be so worth the effort. I wonder your doctor means by drastic measures. Some consider the needle guided biopsy an invasive procedure. I know that use other methods also. The GOOD news is that you were able to reduce your pain. Don’t you absolutely love it when you get a little control over your illness?

      Not drinking and keeping your weight down is awesome! You’ve won a huge part of the battle already. Milk thistle is has been endorsed by some M.D.’s and others totally disapprove of it. As long as your doctor is aware, I am happy to hear that you are getting great results! I tried the milk thistle product too and wrote about it on this blog.

      All my best to you on your health journey. I’m glad you stopped by to visit! I stopped by your site but was unable to leave a comment. Can you tell me why? I’d love to chat more.
      Thanks, xo Karen:)

  7. my story is different which confuses me. I woke up with a pain in my stomach-the pain radiated to my right side and up my back. It was severe and I had trouble breathing. I was diagnosed with pancreatis. A gastronologist came in and said it was my liver. When I got home I had edema in my lower extremeties & my stomach area began to swell. They took out 3 gallons of fluid and said it contained fluid that proved it was cirrhosis. I was not a drinker and am considered thin. I also do not have heapitis. My doctor told me not to eat hot dogs (which I never do) and watch my sait intake. That’s it. I am scared and do not know what to do. I have pain on my right side and it is strong. Help

    1. Hi there. Your message raises some anger in me. I gotta calm down here. When I was first diagnosed, it felt like I was not getting any information either. But honestly? For you to have ascites (fluid build up) and swelling in belly, legs, and feet there is definitely liver disease happening. You deserve to at least know the cause of it. For example it could be autoimmune, fatty liver disease, or other things besides hepatitis or alcohol and drug use.

      You also should have some other tests like an endoscopy where they look in your stomach. Did they perform a CT scan? These diagnostic tools can help a doctor to know how to treat you. I’m assuming they gave you some diuretics, right?

      I will say that the advice is basically the same no matter what caused it: Low sodium, plant protein as much as possible etc. Now I am calming down. Really, this is why I started the blog. I was just like you and didn’t know what to do next. My doctor’s did perform a lot of tests and kept a close eye on me. I hope that your doctor is doing a close follow up also. Do you have family or friends who can help you know which steps to take next? Maybe another doctor?

      Listen kiddo, it is scary. My liver has hurt all week since I had a procedure done. Pain sucks… and it plays tricks on your mind. Please try and take deep breaths and relax. Send your liver some loving thoughts and good food. I’m sending loving thoughts right now.
      xoxo Karen:)

      1. Thank you for your responce. I am not a medical person and am looking for answers. I now am eating foods around the outside and not the middle of the grocery store. After reading so much on the internet I wonder what stage of cirrohsis I am. Some bloggers claim the liver will heal itself. Since changing my diet the pain is not as bad.
        thanks again Henry

        1. Henry,

          You’re shopping the same way I do! It’s really different for us now! The liver definitely can heal itself. It’s the healing that causes the fibrosis. Many people who get rid of initial cause of liver damage such as HCV, drinking, or drugs or use drugs to reduce inflammation from other liver disease do really well.

          I say that because if you are only stage 2 ish, you can live decades with the diet and lifestyle you describe. My hope is that you will do just that!

          THanks for stopping by, xo Karen:)

  8. Karen you’re the angel that many of us look too ! Having end stage cirrhosis and facing my next steps now ) starting sept 2nd I start all my tests . I have remained quiet . I took my daughter on a small vacation! The 1st one since clearing my virous 12 weeks ago ! I don’t have the heart to tell her what’s ahead now .. I’ve decided to wait and see what all my options w) be after Sept 2nd, but Karen I am 4ever gratful for all that you write . So many complications we have from all the virous caused . I just want to tell you ) your name is brought up often ) so people like me miles away think about you often . I watched all your videos during my tx ! I follow your posts as my he allows on top of work ) and being sick ! I have you in my prayers . You amaze me at all you can do . Your knowledge . I have lost my teeth on too so so many complications ‘ My stroke caused many issues . My list is long . What’s important is that we all stand as 1) and get well . The education you’re putting out is so important . Thank you . can’t concentrate long enough to do all that I used too in my community with hcv ! So I look up to you . I know you need to look up to us now though . Not enough words can say how much you’re loved and thought of. I will be holding your hand ) please hold mine too ) as our new liver journeys have started! But we will win this battle , I’ve had that horrible stomach and pain since 6pm or so ! After waking up at 9pm or so I got up . Still awake now ) but thanks to all that you do Karen my mind is calm and eyes are heavy . I hope you awake pain free! If I sound confused today ) I know you understand . I hope that you’re smiling today beautiful and that rainbow touches you .. You deserve the dream ! I love you Karen ❤️❤️❤️

    1. Dear Ann,

      When I first read your comment, I thought maybe you didn’t want it posted. Many readers like to remain anonymous. You and I share so many common friends, that I feel you are ok with me responding on the website here. I truly had no idea you were going through the listing process. You are right, it is so easy to get brain foggy and forgetful.
      It’s scary stuff sweet girl. But it is also a new beginning for us in many ways. We will focus our attention on training for the transplant. Like a laser beam, we will set our eyes on being in the best possible shape. Then we can begin to heal and move toward the bright future!
      I will be writing about the process of getting listed and also about the surgery itself and the lifelong committment to caring for a grafted organ. We will be learning about this together dear one. I’m so sorry that you have to endure it, but you are not alone.
      It means so much to me that you were my bestie during treatment. I was holding your hand then and will continue to hold your hand through whatever comes up next.
      You are not so far from me. You should let me know when you are near Tulsa again. We can hook up and hug and chat! I mean that!
      Much much love and I”m going to bed too. Pain was less today. Yes, healing always comes. I love you too Ann!xoxo Karen:)

  9. Hi Karen,

    I am over here in Ireland and have been reading all the information and support given by yourself and others. It is so hard to find the right type of information that people with cirrhosis need to stay as healthy as possible, but sometimes the barriers of life in general stand in our way. I was told I had cirrhosis on February 2011 due to alcohol abuse, I was not a fall down drunk but just got carried away with living a good life in general also my job involved a lot of social events.

    To my horror I thought I had the flu over the Xmas period, and on 2 February 2011 woke up to find myself yellow so my g.p sent me straight to hospital where I was in ICUS given potassium, blood, IV fluids etc.., then ten days later when I was transferred to a ward to recover from all the drama was told about my liver I felt so guilty as I realised I had nobody to blame but myself, a few months later I devoleped vairces with portal hypertension and had a really bad bleed which I almost did not make it I had lost about four pints of blood. I have not had a drink from that February and can easily say I will never have another drink, but since then I have developed diabetes type 2, and at the moment having trouble with my heamaglobin which is hanging around 7 so I had a blood transfusion last week, but still feel terrible.

    The problem I’m having is I can’t get a straight answer from my consultant, I have asked him many times how long can I expect to live? How long do I have until I become really sick, as I need this time to plan my future, I see him twice a year for consultation and I have two scopes a year to check for broken veins, abdominal scans twice a year, I take all relevant medication prescribed for me beta blockers, stomach medication, stertraline, so I guess I am asking do you have any idea of the questions I need to know I also know You can’t put an accurate time on something like this but for somebody who talks to a lot of people with the same problem might help.

    He has also said that I can go on the transplant list as there is no issue with alcohol anymore and he knows I am doing everything he tells me to, but that was two years ago and he has never mentioned it again. So I would be grateful for any help anyone has to offer. Love to all who are going through this horrible illness.

    Kind regards
    Rita from Belfast.

    1. Rita,
      Wow. You’ve had a go of it! Our diagnosis was much the same with the “flu” symptoms ending up as cirrhosis.

      You pose a tough question that we all ask ourselves. How long do I have? Which route should I take? I decided NOT to go the transplant route and was satisfied to just keep living my life. Fatigued at times, zoney, etc. but it was working for me. My decision was pretty much made for me when they found the tumor. I jumped on the chance to get a new liver. Now even though I am on the list, I still go back and forth. But the truth is that the cancer can spread. So I am going forward.

      You CAN live a great quality of life with cirrhosis. Stay with the meds, eat like a ninja, and be a “self lover” in all areas of your life. I’m hoping that others who are wondering what to do next will respond. It’s a personal choice about moving toward a transplant. Have you checked out my Facebook ihelpckaren or ihelpc.com on Facebook? I have a lot of friends there in the same place. Tons in the UK also. xo Karen:) I know you’ll stay in touch and let me know. I’m writing about transplant right now. It’s a bugger and makes me cry. Let me know what you think when I post it. ok?

      Much love, K

      1. Dear Karen, I am so happy to have found your blog. My best wishes to you and hope you get a miraculous new liver soon to keep you spreading the word to the the world. So far from what Ive read if feel a real connection here. I’m on Med Help forums and it feels like I don’t have the same level of knowledge and common healthy eating goals there as you seem to have.
        A brief summary of my situation:
        Diagnosed with Hep c after a 2005 hip replacement. (The sent me a card to attend a class for hep c in 2009!) 4 years after. Oh well that is water under the bridge. Arthritis and joint pain seem to go hand in hand with liver disease.
        That doctor (the one who waited 4 years to tell me) said that I had stage 1 and fatty liver. Hep c 1a. He also said the treatment was arduous and not very good and that I should wait for new and better drugs.
        Change of doctor in 2011. We went by the old pathology and didn’t repeat the biopsy and decided to treat with interferon, ribaviron and boceprovir. Which I acheived undetectable. But for some unknown reason I didn’t screen (myself being my own best advocate ) I wasn’t asked to come in for regular screenings and so long story short, I didn’t. I thought I was SVR. But no. P.S. I also drank wine during that time thinking I was cured. Probably the worst mistake of all.
        A few months ago and if I think about it several episodes over the past few years ago, I had the flu-like symptoms plus racing heart and severe headache. They emergency room tested for everything heart related. Nothing just a high ALT/AST result. I call my GE and go in. I get a fibroscan the same day. Stage 4 cirrhosis. I was like being punched in the liver. (Which aches and hurts all the time) Hep c was full blown relapsed.
        I fought with my insurance and appealed every denial and every other drug they tried to give me that included ribaviron. (I like you lost my hair, covered in a rash, mouth sores and was really on the low down with the Int/Riba/boceprovir. )
        Feb 20th took my 1st pill of Harvoni. No side effects from the drugs at all. The only thing I feel is the side effects from liver disease. Fatigue, dry skin, achy upper right quadrant.
        I don’t drink, eat a largely vegetarian diet and just really started watching my sodium. I have never had varices or ascites. So I just take it easy (thank god I can afford to thanks to my husband) and pray without the hep c or wine my liver will regain some more of it’s normal function.
        As an aside my brother (different animal altogether) almost died from ruptured varices in 2009. I went to see him in another state. I spent a week with him and my niece in a hotel at the Mayo clinic trying to get him on the transplant list. He refused to give up his addiction to pain meds oxy etc. and he was denied. He was a disabled veteran. He died in October right before my diagnosis of F4. He was in home hospice care. He had the same hep c that I do. He never treated it,
        tho he did quit drinking for the past 10 years. He also never ate healthy. Mac n cheese was his favorite. Quarts of fluid was drained from his abdomen numerous times.
        So super wake up call. This stuff can kill you. I try to remain positive and proactive and have taken up the full time job of taking care of me.
        Tomorrow is my first blood test after 2 weeks on harvoni. fingers crossed.
        Most RX naive patients with no cirrhosis only have to treat for 12 weeks.
        I as a relapser with cirrhosis treat for 24.
        Thanks for letting me share. I still feel uneasy sharing this journey with my friends. The question of how did you get it? doesn’t matter. I have probably had since I was 18. That tatoo in Amsterdam , those stitches in Karachi. The ears pierced in Thailand. Who cares? It is what we do now, today.
        Thank you for being here. It means a great deal.

        1. Teresa,
          I loved reading your story. I hate it that you have hep c. But I sure am glad that we connected! Your story also echoes what many of us have gone through. It really touches my heart to hear how brave you’ve been. I also hear how lonely and frustrated you’ve been in relationship to your doctor. Sounds like you’ve got a good one now.

          I wanted to respond with a congrats on finally getting new treatment. Yay for the new all oral drugs! It’s amazing.

          I’m so sorry to hear about your brother. It sounds like his parting gift to you was to take it super seriously and live your life. I can hear the hope in your voice and have to wonder what great thing is in your future? You have a great turn with words. Maybe you’ll share your story in a blog here for me.

          BTW – I am crossroads on medhelp. It was my hangout on treatment. haha! I still pop in from time to time. A lot of my old friends post here on the blog also under different names. Once I achieved SVR I wanted to help without writing the same answers over and over. I felt like at medhelp that’s all I did. Now I write it once and have thousands who connect and get the tidbits of info that they need.
          I’m just happy you wrote. I hope we will stay in touch. You will find lots of personal friends on fb pages also. ihelpckaren is my name and I have a lot of support with cirrhosis.
          Keep me posted girlfriend,
          xoxox Karen:)

  10. Im freaking out right now my GI sent me for blood work due to my hep c and wanting to go on treatment and my resault came back fibrosure test showed i was F4 meaning cirrhosis now im freaking out

    1. Jesse,

      Go ahead a freak out for a while. It’s shocking news, especially in the beginning. The good news is that you are going to get rid of the virus! Your liver will get a break and you can begin to heal.

      I’m glad you stopped by and are getting some information. You DO have options about how to eat well and keep your body strong. I hope that you will be able to start eating a good diet and get yourself ready for treatment. It’s going to be ok.. Freak out and then start an action plan to get on with the rest of your life. You can do this!!!!!
      xo Karen:)

  11. Karen,
    I have a daughter 27yr with end stage 4, 6 mo ago she was feeling pain went to emergency but did not feel urgency to stay. She also has hep b, she was bleeding from her teeth swollen, I took her to dentist only thought it was gingevitas & her ankles were
    swollen as well thought it just might be water retention After I took her I told my husband cause the prognosis was the liver & I think she is angry @ me cause she does not talk to me she talks to my husband I cant understand @ the time she went to emergency the 6 mo ago why she didnt stay she is a big girl & at the time cant find a Dr you need to go right away, the Dr told her the liver was heavily damaged 25% chance slim chance. But hopefully things can turn around without the alchohol.

    1. Linda,

      It sounds like she may be deal thing with Hepatic Encephalopathy. Please see my youtubes and blogs on that.http://www.ihelpc.com/hepatic-encephalopathy-a-hep-c-and-cirrhosis-nightmare/ . I know you must be in a lot of pain right now watching your baby girl go through this. She loves you and knows that you love her. She’s just so sick right now and can’t break out of the fog. You can stay closer to her if you don’t give advice. I know it’s hard. Will she go to a 12 step program if you or her dad takes her? Let somebody besides you giver her advice. Then you can just support and love.
      I’m joining with you in prayer that she can kick the alcohol and give her liver time to heal. I hope these ideas help.

      Hugs and love, Karen

    1. Sherry,
      I’ve been watching this on your Facebook. Have they added points to his MELD score? This is usually what will improve his chances of getting a transplant. It sounds so crazy to think that you have to get worse in order to get transplanted.
      Have they changed his treatment plan at all?
      Once we hit end stage, it’s important to get the best of care. I know that you are good at advocating and keep asking all the right questions. Let me know.. kk? I check on here more than anywhere.

      xo Karen:)

      1. Thank Karen.
        They are treating the Hep C right now and other than that plans on scans and treatment. We live 5 minutes from the hospital and things are changing now they know he has varcies through his body. They have not added to his score at all. First tx team messed up and did not seek the exception point. He is very low in numbers. Thank you.

        1. Hi Sherry, my name is Dee, I am a friend of Karen’s. Karen was called early yesterday morning for her transplant. They thought it would happen sometime yesterday. I just received word that it is happening now. I will get back to you asap. Dee

  12. Hi Karen,

    We just got a call yesterday informing us my 16 y/o nephew has cirrhosis of the liver, stage 4 (end stage). We are devastated and don’t know what to do. We have not gotten any guidance and don’t know what to do. The doctor just mentioned diet and exercise but no specifics. I have been searching for more facts about the condition and none of what I read sounds good. Please advise.

    Wishing you well on your transplant.

    Thank You –

    1. Oh my gosh, 16? This is truly awful. How did they determine he has cirrhosis? Did they do a biopsy? Ultrasound or blood work? The first thing I would do if it was my child is get a second opinion and also at the same time change his diet.
      In order to help his liver work better I would get him to start drinking water. He should stop eating read meat, fried foods processed foods. I don’t mean he can never have them again but he needs to eat fresh veggies, fresh fruits, whole foods.
      Again, I am just shocked that at 16 he would have cirrhosis. It normally takes a very very long time to get to cirrhosis. It took mine 30 years. I was diagnosed in 2009 and am much improved. I am so very sorry about this.
      Take Care

  13. hi Karen
    Thank you! My brother got diagnosed about 2 months ago with stage 4. He actually almost died the beginning of June from not getting medical help soon enough. Long story. But we prayers and believed he’d make it through. Through the grace of God he did! Was a mess for awhile, then spent a few weeks in nursing home. Has amazed everyone. He was discharged today and new the journey to heal will really start. He is temporarily living with me and my family to get more stable. He has a great attitude and is sure he will be fine. I believe he can also. I need any and all help I can get on how to get him started on a good path to heal. Thsnkfully hes got the first step down. Which is attitude to get well. But unfortunately he’s not real resourceful or super proactive. Doesn’t even own a computer. What can I do help? Thanks you?

    1. Hello! Oh this is wonderful news to wake up with, thank you so much for sharing! There are some good ideas for recipes even fast food if you go to the upper right hand side of this page there are Liver Loving Recipes, it is a drop down menu. Your brother should stop eating any red meat, fried foods as well as processed foods like TV dinners or lunch meats to help his liver work better. He needs to reduce his salt intake as much as possible. He also should drink alot of water, again to help his liver function. I have cirrhosis and have been able to improve my health quite a bit. Karen is still recovering from her liver transplant so I have been helping out. My name is Dee, it is really nice to meet you. Thank you for writing in. Here is the link to see the diets. If he could he should try to walk every day. This will help his blood flow and general body function. I hope some of this has helped you. You are a really good sister to want to help him. Please ask any questions. If these tips aren’t helpful, you can also look up heart healthy diet, that would be good as well.


      1. Hi dee!
        Thanks so much for replying! I will print off a lot of those recipes. I try to not be scared but I just don’t to lose him! This has been a scary couple of months. Doctor isn’t suggesting liver transplant at this time. Says his body is too weak with no muscle mass. He was severely malnourished. So continuing to work on that. He is having a lot of stomach fluid built up. And gets that drained weekly. So that makes him uncomfortable to eat. I’m hoping now that he just moved in with me for a little while I can him on soups and protein smoothies since that takes less digestion. I just worry after he’s on his own again.

        1. Hi there, I think while he can be with you he could learn what he could eat. Everything that we eat, drink, apply to the skin or even eyes is processed by our liver. Thinking that way we need to think before we put anything in to our liver. We need to be kind to our liver. It sounds as if he needs protein if his he is malnourished with poor muscle tone. I am now trying to limit my salt. Even after all this time I just learned that from Karen. Salt and sugar not our friends ha ha. There are many times I don’t feel like eating so I will make myself a protein shake with some fruit in a Bella blender, it was inexpensive under $30. I got mine off of Amazon.com Karen has some ideas for that here if you are interested http://www.ihelpc.com/protein-shakes-for-a-healthy-liver/
          I don’t know if you all need any financial help but I just gave this information to another gal. It is a place where they are supposed to help with any kind of illness http://www.panapply.org I don’t know the particulars but thought I would share it with you just in case. You can also look into your state or even churches. I hope everything works out. You are very kind to take the time to take him in, look for information. I will be thinking of you. Keep in touch, Dee

          1. Hi dee,
            Thanks so much for the resources! I will definitely be looking into them!

            What are the thoughts on caffeinated coffee being liver friendly?


          2. Hi Amy, you are very welcome, sorry for slow response. I hurt my back so am having a hard time getting around.
            I wish you the very best. Dee

  14. My brother was told he has cirrhosis, en l arged spleen ,has some yellowing of the eyes ,all his lab work was high,he doesnt complain of any a bdominal pain or really any thing ,works a full time job ,golfs everyday,getting ready to have the scans done so he can be scored ,with everything ive read it sounds like he would be a stage 4 ,, but he has no pa i n anywh e re but his l a bs are four times what they should be and is ammonia level caused confusion so were working on getting thst down even though he only had mind confusion for abot 12 hours, im really scared because im a drinker also but have n e ver had an elevated enzyme yet and do not have h err p c and neither does my brother,we have both decided to stop drinking completely if you have any advise or questions please email me thank you,pam

    1. I’m glad you stopped by and hope that the information helps you. The stages can overlap and go back and forth. But once HE sets in, you can be sure that other things will follow. Pain is not a typical side effect until end stage. Then it is more of a feeling like your liver weighs about 50 lbs.
      Hepatic Encephalopathy can come at anytime, but mostly during the last stages. I have a youtube on xifaxin for HE. Check it out. Also, I applaud you both for stopping drinking. That is going to make a huge difference. I have known people to live for 20 years AFTER hepatic coma. With medication and no drinking, you can have a good quality of life. All my best to you on your healthy journey. You and your brother have all my love and prayers.
      xo Karen:)

  15. Hello Everyone,

    I’ve been going through something odd lately, this all started back in April of 2015. I came home on a Monday night, felt tired and just decided to go for a nap. Woke up with stomach pain and black tarry stools (Thankfully) they went away. I then started experiencing what appears to be Cirrhosis symptoms. I’ve gone for countless blood tests, ultrasounds, CT scans (With contrast and without contrast). I then have a endscpy and colonscopy. All came back normal. Something very ab normal is going on, doctors now keep trying the (Aniexty) card. I now am suffering from insomia. Went from being 190 pounds with muscle to 175 (Up from 165). I’ve tried the psycologist and they want to start me on sleeping pills (Not going to take them incase I have liver diease). I’ve noiced I’m not disgesting fat properly, and noticed markes on the nails (I assume vitamin deficiencies). Also having the tell tale signs (Fatigue, upset stomach with certain foods, mood swings (HE). I started drinking coffee (Using it as a lacitive). I changed me diet now and I quick drinking, join AA. I was only a weekend drinker (Friday and Saturday). I’m only 26 years of age and I believe I might be in the Stage 3 or 4 category. There are no signs according to the doctors that would make them belief that is the issue. The symptoms are real and they’re scary. Just had my first daughter back in May. I didn’t know I was fighting cirrhosis, didn’t have these symptoms until recently. I’m scared and I’m fighting this without the help I need. I’ve tried countless hopsitals and tried reaching out, even filed a complaint for one hospital. The board reviewed my case a stated “There was no evidence of cirrhosis”. It’s not necessary to send me to a specialist. I feel like and idiot for doing this to myself, not to mention my daughter will probably grow up without me. I’m in a fight for my life! I know what is killing me but the doctors don’t believe me. On one accasion when I had a Complete blood count ran I had low white blood cells, not to low but a bit lower then the range. It was flagged on the paperwork but the doctor didn’t tell me about it. I now know this is a known issue with the spleen. Keep it mind I have no signs of portal hypertension. I’m going to get on a high calorie, plant based diet, with tons of fruit, and I drink a ton of lemon water now. Has anyone else had an extremely difficult time trying to figure out what’s wrong with there liver? I know it’s the liver, I drank like a dum young kid when I was growing up. Didn’t start drinking until I was 19 / 20 ish. Sad how is six years I could be advances cirrhosis from drinking (Keep in mind I only drank on the weekends). Boy do I even regret what I’ve done to myself. I have no answers, family doctor won’t send me to a liver specialist because my lab results are normal. Any thoughts?

    1. The liver is such a crazy thing. Everyone can have different sets of symptoms. I would be sure and ask for another opinion. What did the board base this on? No evidence of liver damage? Sometimes doctors will pass you by if you appear to have an ongoing problem drinking. If you are dedicated to sobriety, keep pushing for more medical attention. Unfortunately, if you are determined to drink, the doctors know there is nothing they can do for you.
      I personally think that family DNA has a lot to do with why some liver disease advances more quickly for some people. My family has a history of weak livers. It’s one of the reasons I never drank. Let go of regret. It’s a negative emotion that will hold you down from getting better. Go to the Best Friends Start Here page and look up a blog on how to change your thoughts. I hope you can begin all new dear friend. I’m pulling for you.
      With love, Karen:)

  16. My brother in law has c o t liver and is sick but his eyes are so very clear…no yellowing ..so what does this mean..Isnt that a sympton??

    1. You’re sweet to be looking out for your brother-in-law. The symptoms can be all over the map. My liver actually failed and I did not have yellow eyes. My sister always teases me about it. My skin got yellow, but my eyes not so much. The doctor will probably give his liver a “stage”. Please go the the “Best Friends Start Here” button on the right and read about that.
      I hope your love and family support will help him get better soon.
      xo Karen:)

  17. I just want to let all of you know that my husband was on waiting list and received his first liver transplant on 2003 and then another in 2006.. He contracted hep c from a blood transfusion . Keep positive and make yourself get up everyday . Focus on doing things for others . He is doing well now with non threatening symptoms. Keep checking your blood work once a month . Milk thistle also helped my husband ..I will say a prayer for all of you hurting…

    1. Hi, thank you so much for sharing, this is wonderful news. I had a friend who had HCV, I had lost touch with her and was looking for her, she had moved and changed her number. I was looking all over, I finally found her through her husband and daughter and it turned out she had just had a liver transplant. I had heard that coincidence is God’s way of being anonymous, I believe it after this experience.
      We are so much stronger together. Congratulations on your husbands great news!! Please keep in touch and keep sharing, Dee

  18. Hello, this blog has me in tears. Hearing some of your stories makes me feel hopeful. A dear friend of mine has cirrhosis stage 4. About 5 months ago the doctor told him he is going to die very soon if he didn’t stop drinking. Well he went to rehab in July. He didn’t take his meds like he was supposed to. When he got back he was so confused, lost a lot of weight, could not think. Everyone thought it would pass but it kept getting worse. He went into the hospital and they kept telling us his health is declining quickly. He was in there for 3 weeks. The day he came out he was like his old self. But the day after and every day ever since he has been confused, sleeping constantly, or wide awake and wandering, tells us stories like he’s been on a ship for a few weeks, gets very angry, repeats himself constantly, feet are swelling, can’t say what he’s thinking, can’t make it to the bathroom and all sorts of things. He has 24 hour home care but he is just getting more difficult to care for. Does this sound like he does not have much time?

    1. What a good friend you are! I honestly saw my dad, who was an alcoholic, go into a hepatic coma for over 3 weeks. He eventually got on lactulose, quit drinking immediately, and lived almost 20 years. We had wonderful times of healing for my family. Miracles can happen when the right steps are taken. I’m sending you all of my love right now. xoxo Karen:)

      1. He has been on lactulose for 5 years now. He never really took it faithfully. Now that someone is doing for him he is actually taking it like he is supposed to. This is his third coma due to this disease. I just feel kind of not so posotive about it.

        1. Oh…dear one, I am so sorry for what you both are going through. I found that taking lactulose after a full meal really helped me a lot. The lactulose did not hit my system all at once so I didn’t get the dreaded run to the potty. Consistency is key. He must take exactly as prescribed as only his doctor knows the shape he is in. Has he spoken to a nutritionist or looked on this site for ideas, under liver loving diets? This is just for me but I only drink filtered water to help my liver work better. No read meat, no fried foods or processed lunch meats, limiting salt is a good idea so you don’t have to deal with fluid build up. Lots of veggies and fruits. My breakfast consists of a protein drink with fruits, veggies and almonds. Funny how you can’t even taste the kale and apples make things taste sweeter. I mix anything in there I can think of, strawberries, bananas, blueberries. Some days it is delicious, others not so much but I tell myself it is good for me. I found a Bello or Bella juicer for under $30 that liquifies everything, even celery, nuts and carrots. I drink it right down, there is no pulp to deal with, and feel I have done something good for myself. I have met people who have changed their diet and changed their health quite a bit. It can be done. Baby steps is all it takes. I also take daily vitamins, no iron. If iron sensitive, then watch the spinach in your drinks.
          If you look in the upper right hand corner of this blog there is a drop down menu called Liver Loving Recipes, it gives great ideas. There are a lot of diets out there, heart healthy diets are good to try as well. Hang in there my friend, united we stand, Dorene/Dee

          1. Hi all,
            Any thoughts on care for my brother???
            Health insurance is saying they’re terminating coverage of nursing home care because of progress in physical therapy he’s made. this happened also in July. I knew he couldn’t be safe and care for himself alone so I took him to my home with my family. It was hard. And even though I gave him his meds daily he had another ammonia rise and was back in hospital a week after discharge from nursing home. Long story short, he is not cognitively safe enough to be on his own. I have young children and a job- I can’t care for him. He’s not able to be eligible for county assistance and his private health insurance is denying. Nursing home care is $240.00 a day. He doesn’t have money for that either. I am appealing the insurance decision but I’m still trying to figure more options out for long term care for him. He’s in no shape to care for himself. plus because of his mental confusion, the courts put guardianship of him to me and my other brother. So he’s not even his own decision maker. Thanks for any help or suggestions.

          2. Oh my gosh, this sounds awful. What I am getting from you is that they feel he is fine once they can get him on a regular dose of lactulose but once that happens then he doesn’t fit the criteria of someone who needs help. Would you mind telling me what state you live in? I could try to see if there is any state of county help, patient advocates groups and also talk to some friends that I have met through the internet.
            I know that there are people who can come to your home to make sure you take you medications but every state is different and some states don’t provide much. When my elderly relative was having problems taking her medication I would stop by her home every morning on my way to work to make sure she was taking her medication, which mean watching her take it. Then we had meals on wheels deliver her lunch and a cold sandwich for lunch. Of course that presents problems because there are times the patient thinks they are just fine and don’t need any help In her case she had Alzheimer and had to take her medication or could be found found walking her neighborhood lost and without a winter coat on. Half of the family did not want to get involved the others were in deep denial. Where we live there is a place called Adult Protecttive
            services and they will come to the home and evaluate the person to decided what can be done to help. They were run by the county not by the state and were trained to evaluate each person individually. I hope some of this might help you. I don’t know if this would apply to your brother but have a friend whose husband was a plumber, she has been able to get into assisted living based on the fact that she is a widow of a deceased plumber. Please keep in touch, let us know how things are going. I would be willing to take your this convo off line to talk to you in an email/in private if you prefer. Even if we just start with the state it could help others.
            Take Care, Dee

          3. Thank you dee for all your care! We live in WI. I know once he can get on state he should have more resources. Everything is just such a hard process…

          4. Oh sweetie, I know how hard it can be, I treated for the first time in 2008, treated for 48 weeks. It was tough but I did it. Then in 2011 I tried again with a harder tx, this time it was only 24 weeks and it worked. I have been cured now since 2012. Finding a doctor you like and trust, all the paperwork, preparing for txd, getting through it was hard. Back there there wasn’t a lot of help. Now there is a lot of help.
            There are many organizations and help site like this one, Just be careful. You should never have to pay for anyone to help you. There are patient advocacy organizations. Many drug manufacturers offer reduced or free care depending on your income. I was very lucky. My co pay would have been $200 a month but I did not have it, they all helped me so I had to pay only a small amount. I wish you a lot of luck, please keep in touch

      2. Thank you so much again Karen for this site! I am wondering of anyone having success with taking activated charcoal for cirrhosis. There’s very hopeful studies on it in Britian. I am going to talk to my brothers doctor about him taking it. And just wondering about anyone here. My brother was diagnosed with stage 4 cirrhosis. He’s been alcohol free for almost 5 months and very stable now again, but well you know, it’s ups and downs medically and emotionally and a still quite sick…
        Thank you.

    2. It is common in liver failure to be irritable and confused . Encepholapathy not sure is spelling is because the pneumonia levels from the protein he eats cannot be digested and the levels reach the brain and cloud thinking . This is only temporary . My husband takes 40 Mil. A day for depression and irritability – it held a lot. I know mess make you tired but he has to keep taking them . And yes they told my husband numerous times he could die and he has lasted a long time . Cut down on sodium, take milk thistle supplements and ask for his blood levels when they test him and see how levels are . If he’s getting better or worse . Leg swelling furosemide again not sure is spelling can take away some of the water. Keep hopeful . I know what you are going through and I got through it although not easy…

      1. Hello there! Thanks so much for sharing with all of us, it is very helpful. Cutting down on salt is very helpful. I always tell people to drink water unless their doctor advises against
        Have a great day Dee

    3. I know my blogging sounds like rambling but let me give you another thought. The liver can be affected not only about alcohol but also any infection at all . Make sure you wash hands and especially when visiting Drs offices .. Any infection in the body or virus can cause liver functions to spike even a tooth ache make sure you get cleanings 2 times a year and have cavities fixed. Even when my husband has a cold his numbers spike. Because I’ve been dealing with this for over 10 years , I have learned a lot and I also believe that once the virus has been gone . It stays dormant and can become active again so stay away from alcohol excess pain medication . One more thing . When your liver is failing it doesn’t process medications therefore it is easy to is od . When my husband was at hospital after 3 years from his first transplant he was confused and kept saying his pain levels were a 10 and they actually put him in a coma from morphine ugh but I live in kc and he was lifted lighted to Omaha Nebraska it was only close place my insurance accepted .. That place was amazing for both transplants keep the faith …

      1. Hello there! How are you? While ingestion of various types of foods, lotions, evey eye drops must be processed by the liver; the worst thing for the liver is the continued assult of Hepatitis C. Until that is cured it can not improve in any way.
        I had HCV and was in the begining for cirrhosis, the very very begining. 4 years ago I was cure. my doctor an all of his colleagues as well as scientists in the research filed are calling it cured.
        That is the first thing you must do. Of course eating right foods, cutting out red meat, fried food, processed foods, shell fish, salt can help; as long as the liver is under attack by the HCV that is the main enemy. I believe dormant HCV is an old world used when the viral loads were low. Now much more is known, people can have can low viral loads but lots of damage as evidenced by their liver biopsy or low level of damage and high viral loads. As no time is HCV inactive or dormant unless you have been cured. You can google this information very easily
        I hope you are cured, I pray you are cure like I am. Bless you dear friend, Dee

  19. Hi I am 42 and just had my gallbladder removed at the end of May. They did a biopsy and I am in stage 4. I have not had a drink since May and I really don’t know how to feel. Some days are wonderful and some days I am very sad because I feel the end is near. I don’t have symptoms except neuropathy in my feet and legs. My gastro Dr told me he is going to see about getting me tested to see if I qualify for the list and hasn’t told me anything else. I go for my first blood tests since my surgery on sept 14 and I am hoping I can be given more answers and how long I may have left. Just so u know I have always been very petite and have had eating issues for the past 4 years and they finally figured it was my gallbladder. Now this. I eat like a horse now and it’s really just anything I can eat. I have never been a healthy eater cuz I am small 5’4 110 lbs. so having this appetite is amazing but that’s the only thing that is making me happy with all of this. Just so confused about how long I have left to be w my children. Thank u for his blog. I don’t know how I found it but hope to be able to save it. Tami

    1. It can be so depressing to get news like that. You’re so very young. Honey, you can beat this. By not drinking and eating healthy, you can go for another 20 years. It will take a liver loving lifestyle. You may have to take a beta blocker and lactulose eventually. But with a healthy low salt and healthy protein diet, it is possible.
      Poke around here on the blog and see if you can find any new ideas to replace the ones that are keeping you down. You can raise those kids. You are going to beat this. Love and hugs to you today. xoxo
      xoxo Karen:)

  20. Also I am eating like a horse but not gaining weight either. Is this a symptom of stage 4 or maybe my body adjusting to digestion without my gallbladder?

    1. I know of many people who lose weight after a gall bladder surgery. I also dumped weight easily when my liver was stage 4. It was really hard to put it on. Metabolic systems are certainly a mess. Try to eat several meals a day!

  21. Thank you Karen for your suggestions and words of encouragement. I am usually a very positive person but having little to no answers yet it does effect my daily mood. Hope your recovery is going well since your surgery! God bless you!!

    1. Hi There I may have gotten confused, happens to me a lot ha ha. I know how it can be sometimes trying to be optimistic and I am have always looked to Karen for her optimism. She has the ability to always bring me up. I have always thought that I I could over come a lot of things but sometimes the waves come so fast and hard that I can barely breath
      She recently wrote this and I thought you might find it helpful, I know it did me, Dee



  22. I meant to ask what are the steps after my blood tests since the biopsy? Do I get my meld score or does the transplant team figure that after I’m sent to see if I even qualify? I understand your not a doctor but was hoping you may have some answers or can direct me to a sit that does. I have done a lot of research but can’t find any of this info. Thank u so much for any help.

    1. Hello there, there is a formula, they take your blood work to figure it out so not hard. Here is the forumula, just get your blook work, enter the figures and this should work, let me know! Good luck, Dee

  23. Hi been doing some research.trying to figure out where I am with cirrohis stage 4.
    Had Hep C. did a 3 month treatment with Harvoni and I am free of the virus to date. I have two more tests to confirm its totally gone Oct and Jan of next year.

    but I am at stage 4 now I need to be checked for cancer twice a year.
    I’m always tired. I can sleep 8 plus hours but I get up and still tired. within an hour or 2 I go for a nap which refreshes me for about another hour then tired again. is this normal. also on occasion I have a upset stomach or a warm feeling in my stomach. again is this normal.
    can someone relate. I still work it can be physically demanding and lots of fast-paced pressure.
    Still tired started vitamins but I see no difference.


    1. Hello there! It sounds as if you are still recovering. When did you finish the treatment? Despite the fact that this is easier than when interferon was part of the regime; this is still a strong drug. Try to help your liver as much as you can, drink lots of water. Cut out red meat, fried and processed foods. Try to eat lots of veggies and fruit. Karen has a drop down icon in the upper right hand corner that has liver loving recipes. I drink a protein smoothie every morning mixed with protein, yogurt, fruits veggies nuts, etc. Taking a multi vitamin without iron is good. There is a wealth of information here. Try to go for small walks every day, if you can. Be kind to yourself, rest when your body needs it/tells you to, that is when you heal.
      It takes time, that is the one thing doctors don’t tell us. Oh, I am not a doctor just another person who is healed of HCV going on 4 years now. Did I mention water? LOL
      Good luck!!

      1. Thankyou have looking at recipes.
        oh treatment done in may of this year.
        I can’t be too kind as I work late hours and am tired at work but Idespite it all I do try to be active but I’m in a slower rate than normal. I push on no choice
        I watched my husband die of this and it was horrible. he wS only in his 50s. so I’ve seen a lot of negative horrible things and hopefully I don’t experience the same thing. it us nice to talk to someone who has done treatment and is going through some of the same things

          1. Hi Karen
            Thank you for your kind words. even though my husband was on harsh treatment his body couldn’t take the drug. He had this longer than anyone knew about hep c so his liver was beyond damaged; jaundice was already present he was on a transplant list actually called for one but the new liver was not viable so it was a no go. Then cancer came into play so transplant was taken off the table. he sent the coast three years if life with a teach and more times in hosp than out. I was his primary caregiver. I worked from home so I was able to do whatever was needed to take care of him even though he had nurses every day for over 3 years. My point to this after watching what cirrhosis did to him I put myself in the same category. My hep c may be gone, again 2 more blood works to say definitely but for now yes gone I’m not elated. don’t know why. I talked to my docs. and it seems after going through this treatment and being at stage 4 this will in the end still he a huge issue. cancer could be a issue and in about 20 years or less I will be end stage liver disease so why did I go through treatment only to probably die from the disease ? In 5 plus years. I don’t feel lucky. I do have brain fog as they say. I’m on my own and this scares me bleeding out which I’ve seen scares me. I have children but they not around to help. The are really self absorbed people. I’m depressed unhappy gave swollen ankles a little too much weight on me and use I don’t eat well at all.
            I’m happy that I can talk to people who have the same thing in common. I’ve been hiding my illness for 13 years now and still have to. I don’t speak to people about what I’m feeling .
            I did see some recipes to cleanse my liver going to so try it when I get paid . and will do some meals even though I rarely cook for myself I am alone

          2. Hello there, I am so sorry to hear that you lost your husband over a long period of time. Please don’t think the same will happen to you.
            Karen had cancer before her transplant, they did a TACE procedure to give her more time. She was on transplant list and went through two false starts where they called, she was ready but someone else got the liver. The third time the liver was too big but a few hours later they had one. Please read her stories about her transplant and what she experienced. At the top of the page on the right side there is a liver loving recipe drop down. Try to drink as much water as you can, that is all I drink, well a little coffee :) I had HCV, went through treatment twice. The second was worse than the first. What did you take? It sounds like you recently finished tx. Even though the newer meds are shorter duration and supposed to be easier their purpose is still the same, to kill the virus. I had brain fog for a long while like many others. I was told to walk a little every day. I wish I had done that, I think it would have helped. I have now been cured for almost 4 years. Some people feel good after tx, others don’t. Interferon, Incivek, Ribivarin was awful. As Karen would say we do not have an expiration date on our foot. I was told if I did not get rid of the HCV I would need a transplant in 5 to 10 years. I think that was said to scare me, in to the trial that didn’t work, not positive :) Try to do ankle rolls. You sit down and you roll your feet in circles. Does the doctor have you on diuretics? Another good one is to spell the alphabet with your foot. Putting your feet up when your ankles are swollen. As time goes on I believe it will get better. I am not a doctor just a fellow patient who is trying to help. Sorry I am rambling all over the place, I want to help, just can’t organize my thoughts, need some coffee :)
            Please keep in touch.

          3. How sweet u are. I didn’t know that about Karen. thankyou gir enlightening me. I may not walk ouside everyday but I work 5-6 days 8 hours standing on my feet. it’s a fast food rest so I do walk. but if walking outside is better let me know.
            the treatment I had was new Harvoni.
            I was blessed as I had no reactions at all. was able to work not a single problem 16 weeks it was fir treatment I’ve been tested once and free of hep c two more to go. one special blood in Oct and 1 in Jan 2016. I do not drink water. I don’t eat healthy but I did try a recipes broccoli pasta quick and easy was yummy. when I’m home which isn’t often I sleep a lot just can’t seem to get enough always tired.putting feet up is indeed hard to do so when not sleeping I’m at work. so I font know what else I can do. I start lemon water and cucumber and mint combined. I go at it hard then I stop. I’m just tired if being tired. after the next two blood works if free that’s great but I am not happy dont know why. I’m tho king that dr said something to the effect I need to be tested for cancer twice a year for the rest of my life and the damaged that has already been done won’t stop me from having liver failure in about 5 plus years 20 at best do it puts me right back where my husband was.
            I just feel treatment was for nothing.
            thankyou for your comments . I’m rambling now but my mind indeed is not normal for me .
            I need a tea
            please kerp in touch any help or suggestions I welcome

          4. Oh my you are already doing plenty! I thought you had recently finished treatment. I did not realize you were working. Good for you. Yes, standing on your feet could add to the fluid as well, you could try to put your feet up when you are able. When I treated the first time all I could do was go to work, come home, go to bed, get up and do it all again. I apologize for not understanding that you are already doing a lot.
            I guess we all have different levels of damage, when they say cirrhosis it means different things to different people. I was diagnosed right at the beginning of cirrhosis, they saw wisps of collagen which suggested possible transitioning to cirrhosis. That was last 2007. How does your blood work look as far as your liver enzymes, ALT, AST, bilirubin? I think you are recovering from treatment and on top of that you are working your heart out. Give it time. It does get better. I have to get tested once a year for liver cancer and an ultrasound. After I was cured my doctor said I only needed to be tested once a year. He also said that researchers have discovered that once our livers are no long under attack our livers can improve function. Every doctor believes different things but I have seen people improve over time. Hang in there, rest when you need to. It took me over a year to recover, it was a hard tx, I am glad yours wasn’t.
            Take Care

          5. stage 4 is where I’m at …don’t know my numbers but 2 times per year to be tested for cancer. I been aware of this for 13 years could of been longer no clue. but at the end of the days the outcome doesn’t look great

          6. I’m sorry Chris, I just try to be supportive, my heart is in the right place but my foot is often in my mouth
            I’m sorry I asked about your number, there is a calculator where you can figure out your MELDSCORE to see where you are. Again I apologize.

          7. Hey there, how goes it? Are you trying to put your feet up as much as you can? I hope so, try to drink water, that is all I drink except for some coffee in the morning. Watermelon is really good to help flush the fluids out. Everyone morning I make a protein drink with fruits and veggies or what ever I have, some times almonds. Not sure if I already sent this or not



          8. See I was told liver is already damaged won’t get better but it won’t get worse with Hep c virus gone.
            I jyst get upset thing thst in 5 years maybe a bit longer my liver will fail.
            even tough functioning well right now but it will change so he says your right every dr is different.
            I’ve watch my husband go through so many things bleeding out ..transplant …then cancer . then off transplant list …then kidney failure then he died after so many years of I’ll health.
            for me idk

          9. Hi I just wanted to say that I am having some problems today, had back surgery 3 weeks ago, did too much yesterday. I am not ignoring you I will be back. Do you see a hepatologist? Perhaps I can find a bit about the MELD score calculator. I gave it to someone else on here but the way this blog is set up I have to look for it. Perhaps I can also find you some studies on how some people with low to mid range cirrhosis are healing. Unfortunately this is set up like email and it comes in and I can answer, once I approve it it is difficult for me to find anesthesia brain haha Severely scarred parts of the liver may never improve but low to mid range can regenerate and livers can function with 80% of their liver shot. Again not a doctor, back soon, need some coffee :)

          10. I just had to come back, I felt the same way, why did I treat when I lost my job? I could not do much at all for a long time. I used to cry about how I went through two treatments, thought things would be better and they weren’t I was raised to believe good things happen to good people, what a crock haha. Since treating I have had many many problems but keep plugging along through two cases plantar fascitis (that is when your feet hurt so bad you can’t walk) two cases of frozen shoulder, now two back surgeries. I don’t give up but there are days I feel like you, what was the point. There has to be a point, I don’t know if it is too help others, or help ourselves. I have to believe.
            When I feel like this I read Karen’t blogs, she has been through so much and remains so positive. Not that I can be that great, but I strive for it. I also wanted to tell you how sorry I am for your husband. I am sure it was an experience I can’t even imagine. I have nursed two people through cancer and it was painful and forever changed me. Sorry, rambling again, Karen is going to swat me :) HUGS Dee

          11. please tell me more. I am also a supporter .. too bad I can’t see the light I undestsnd the feet issue. we have more in common than u know

          12. Hi here is a little bit, I have donated to wiki, just ignore it, it will let you take a look for info



            I can’t remember if I asked this, are you retaining a lot of water in your stomach? Do you bruise easy? I would suggest getting copies of all of your blood work so you can compare. I can’t imgane the pain and sorrow that you have experienced watching your husband go through such a terrible death. I don’t believe that you are doing to experience the same and I don’t understand the cruelty of your doctor. My doctor (the researcher) said they are discovering that people are getting better once they get rid of the HCV as well as eat rigth, don’t drink, no red meat, fried food, process lunch meat,s or tv dinners, lower salt as much as you can. I will be back just having a hrd time to day HUGS Dee

          13. U need to rest
            I’m sending this so I don’t forget later and besides I will be at work.without treatment I was told I would die. hep c gone to date 2 more blood works to go for that.stage 4 cirrhosis.
            was told liver is damaged that won’t change but with Hep c gone won’t get worse. in a few years my liver will get worse even if no hep c.

          14. Thank you for writing. I am sorry my response is so late. On the 26th my husband was rushed by ambulance to the hospital because we thought he was having a heart attack. It turned out to be a gall bladder attack and his gall bladder was removed. He had to have two surgeries in two days. I am just exhausted. I’m sorry. I pray that the HCV is gone for you. Dee

          15. I am so sorry u had to go through this with your husband but thank god not a heart attack.
            u need to rest now

          16. Oh boy I just read what I wrote to you Karen forgive the huge amounts of typos I was in bed writing to you. lol how horrible but where it says 20 it’s less 10. can’t rember
            I wish I could facebook u would be easier

          17. Hey there! You did just fine, Karen has a Facebook page, she also has an email account. it is hard for her to answer every person but she sure tries :) In the upper left hand corner is a icon that says contact me :) Have a great day!

  24. Well I went to the gastro dr and he seems in no hurry for me to get a Meld score or anything else. I don’t know what to do. He did tell me to find out what hospital my insurance would accept for a transplant though. I know there will be a big penny to pay upfront I’m sure for this even w great insurance so why should I even bother considering I couldn’t afford it? Or is there help out ther that I don’t know about?

    1. Your transplant hospital will help you to look at other options for paying for the out of pocket expense. I hope your insurance will pay well. Let me know when you hear something, ok? That was one of the scariest things to me. I’m muddling through, but have cleaned out savings. The transplant team is good at this. Don’t let it get you nervous. I say that, but I sure did. I cried that day thinking that if I didn’t have enough money, I couldn’t live because of the tumor.
      Keep eating well and take good care of yourself. Maybe your Meld isn’t that high? That can be a very good thing. It’s simple enough to ask them to do it though. It’s a combination of labs and tests. Ask him. You have a right to know about staging and numbers.

      Love you,
      xo Karen:)

  25. Hello Everyone,

    Going back on my original email, board found “No evidence of liver diease”. They determined it wasn’t necessary to send me to a hepatoligist. I’ve had so many blood, imaging tests it’s scarring me. CT came back negative. Blood work shows normal liver function, at least the last test showed it. Scopes showed no signs of liver diease. Is it possible that modern technology is missing it? Liver is normal size too! Scary how many people can be going through this and not even know it. I noticed my skin is indenting easily now (Fluid retention), I cut down on my salt intake and informed my doctor. He said “Fluid retention is common when it’s hot outside”. Absolutely agree with that but along with my other symptoms it’s apparent to me at least what’s going on. I got tested for Hep A,B,and C. Came back negative, usually alcohol related liver diease you end up with Hep C if I’m not mistaken. He’s sending me to another doctor for a second opinion. He referred me to a Psychologist who wanted to put me on meds for my sleeping issues, I refused as the liver breaks down meds. My sleeping is messed up, waking up consistently throughout the night now. I quit drinking completely, I don’t want to die! I was a social drinker like so many young adults, the dangers are not expressed enough. My family has weak livers, I’m noticing the symptoms on my Dad, Mom, Uncles and Aunts. My mom doesn’t drink. My dad drinks once a year when we go camping. I’m wondering if I actually have a hederity liver condition of some sort and the drinking put me into decompensated state. Growing up I always had a dry scalp, skin (Zinc def?), and had a hard time gaining weight. Trust me when I say I don’t drink everyday, I’m not an alcoholic. I’m starting AA meetings for one reason, encase binge drinking (Stupid me) caused it. I’m lost as to what to do, I know my body is giving up on me, I have little white dots on my nails (Zinc def), I started taking Multivitaims to try and restore the zinc in my body (Without Iron). I also changed my diet, more fruits and veggies and I’m drinking Boost drinks too. I drink more water now, does anyone else have to go to the washroom every hour or so? I think I’m drinking to much water to be honest. I’ve noticed I have dry eyes and dry mouth all the time now. When I wen’t for my Endoscopy and Colonscopy there were no signs of diease, GI treated me as if I was crazy. If this is Cirrhosis this is going to be become and epidemic is North American within a few years. I’m scared out of my mind, go to sleep wondering if I’m going to wake up tomorrow. I’m not “Living” life anymore I’m just “Surviving”. I hate what I’ve done, use to be an athlete with a bright future, now I’m alone waiting for my number to be picked by a Grim Reaper it seems. Life is to short! This is going to be a long battle I plan on winning! 26 and sick, never saw it coming. Sometimes we forget the most important thing is our lives when we work and eat and drink whatever we want. The liver is a lot more sensitive then we think. Although is regenerates, without us aiding in the regeneration process it doesn’t as effectly as one thinkgs. Just my personal opinion! Anyone else have a hard time getting diagnosed? Maybe this is mental and I’m causing the symptoms but I doubt it. :)

    1. Hi there! I am sorry you are so worried. Drinking does not give you Hepatitis C. Only contracting it through someone from blood can give it to you. I had it for 30 years and never knew I had it. I am sorry you are so worried. Now…you can destroy your liver through drinking but that does not seem to be the case for you. Well binge drinking can really mess if up but you have a normal size liver.
      If sounds like your blood work is fine and you have had all the tests that would show if your liver is in danger. If you think that some interaction with someone has given you something get your Hep A, B and C done again. I had a false negative on my HCV test but I hear that is very very rare. Not trying to scare you. Have you been to a hepatologist and discussed your fears about your liver? that is a GI that specializes in the liver.
      I don’t think the GI should have acted the way he did but I guess he sees so many people who are very sick from their livers not working right.
      that he is surprised to see such a healthy person in his office. White dots on the nails, you should look that up. While it can be from banging them or from a deficiency it can also come from a problem with the liver. Do you have any cherry red dots on your upper body? Very tiny. I didn’t even notice mine to a blood doctor pointed them out. I only went to a blood doctor because my platelets were very low. How are your platelet levels? That is a sign of a bad liver. How is your AST? ALT? I am not a doctor, just trying to help. To me you sound healthy but if I were you I would get copies of your blood work. I started saving copies of all blood work. Have you gone for a regular physical with a general MD?
      There is something else called Sjoern which a rheumotologist would have to diagnose Take care, try not to worry but at same time only you know your body. What was your first symptom? Was it after you were drinking? Sorry just trying to help. Take Care, Dee

  26. Hello Dee,

    I noticed these little red circle dots when I originally got ill back in April, they since have gone away but I took pictures before they did. I do have these cherry dots you are discribing. One is the centre of my chest betwen my breasts. I’m notcing my veins are showing, my hands are wrinkling faster. I have these little red broken blood vessels. I showed the doctors this and they aren’t listening. My AST and ALT are within normal range. I noticed on some lab work done at the hospital I had ketones in the urine and blood in the urine. Also notice my white blood cells were just below the normal range (Spleen having issues?). My liver is under attack there is no question about it, my skin goes from yellow to white, trouble breathing. I notice my skin goes back to a normal pigmentation after I walk or ride a bike. I’m not as tired as I was back when I first got sick but then again my diet has changed dramatically. I’m trying to get reffered to a hepatoligist but my family doctor keeps telling me “There is no evidence of liver diease”. His last comment was “I know it’s hard to believe you’re healthy but you are”. I honestly believe my liver just went from Compensated to Decompensated and it isn’t being diagnosed. I told the doctor I noticed chubbing on my fingers and he dismissed it. I now have another chest infection (Probably pneumonia, this is the second time in six months). I will be coughing up green flem shortly, I’ve had this issue since I was a child. I had the red palm symptoms but it went away as well. They originally said I may have ingested food posion which has thrown my body out of wack. Six monrths later I highly doubt this is food posion. The cherry dots explain a different story, I just started to develope these too. Does anyone else have purple nails? Cold hands often? I don’t know what to do anymore, tomorrow I see the second doctor I hope she’ll listen and i’ll be reffered to a Hepatolist. I’m fustrated with the lack of response up here in Canada. They aren’t trained properly in my opinion. They lack the most basic skills (Listening to the patient). I know my body better than what there numbers are showing. I’m tired of falling apart, never though I would of done this to myself? I hope drinking didn’t cause it. When I saw the GI doctor he said my lab results were normal. I was so scared when they put me under that I asked before they did if the drugs would kill me if I had cirrhosis. Next thing I know I woke up in recovery, felt the best I have felt in six months (Drug induced) unfortunately. I don’t know what’s going on but I’m coming to terms with this illness, it’s about managing it and enjoying what time I have left now. I spoke to a lady that has Stage 3 / 4 and she said they would see it on the blood work, or a ultrasound would show scarring too. Maybe I one of the unlucky ones that they miss it on. None the less I’m only helping myself when I quit drinking.

    1. Hi you are right, you know your body, something is off. When you said they put you under did you mean for a biopsy? Or one of the other tests
      If I were you I would try going to a rheumatologist. They seem to be able to catch liver problems good because they run a lot of different types of tests. It could be that it isn’t the liver but something else. I of course am not saying it isn’t your liver. Shoot I had HCV for 30 years before anyone caught it. I was tested for it in the 90’s when my liver enzymes were only slightly elevated, I got a false negative. It wasn’t until my platelets tanked in 2007 that anyone bothered to check it out. I was sent to a blood specialist, they are also called oncologists and I was tested for lymphona, leukemia and another L work I can’t remember. He asked me about the cherry red dots asked if I knew what that could be, I think he knew before he did the tests what was wrong though I can’t be certain. I have heard of something call Raynauds that causes cold hands, not spelling it right. Do you bruise easily, do you know what your platelets are? Have you tried coming at it from a different direction? Not telling them you think there is something wrong with your liver but telling them everything that is wrong? Make a list. Are you saying your nails are PURPLE? That can be a sign you are not getting enough oxygen
      I will try to keep looking, please keep in touch. Dee

  27. Hi I found this about purple nails. In the “olden days: doctors used to look at your fingernails to help diagnose you, I don’t think that is done much any more. I had terrys nails which is white at the bottom of the nail with a red line at the top, that is a sign of cirrhosis. My doctor did not know what I was talking about. So, there are doctors out there that are going to be no help and then you will find someone who will listen. I would stop telling them it is your liver. I don’t think you are helping yourself by diagnosing yourself before the doctor does. I would just make a list of every symptom, starting with the worst one.

    I found this information on purple nails, it does have something to do with not getting enough oxygen. I would make a list of every single problem you are having and take it to a doctor. If you can’t get to a doctor take it to the emergency room
    Please keep in touch, I care, I believe that there is something wrong though I don’t think you have decompensated cirrhosis cause I know people with that. They are on transplant lists. I wish you a lot of luck. Keep fighting, Dee
    Dee Ernst recently posted…Feelings About Dying with Hepatitis C and Cancer [1 Video]My Profile

  28. Hello Dee, its crazy to me that if its my liver I was able to drink it away this easily. I don’t drink daily, only drank beer. Haven’t been doing this for 30 years, I’m terrified. Maybe I’m suffering from alcoholic hepatitis. That might explain the lack of scarring, I was put under for the colonoscopy and endoscopy. Showed no signs of disease. Which is a good thing as I didn’t need to be banded or anything. I don’t know what’s going on. Looks like I’ll end up doing a biopsy.

    1. With no offense meant what makes you think your problem is your liver? When did you start to feel bad? Were you exposed to someones blood? Did you do some binge drinking and take a long time to recover?

  29. Hello Dee, I been drinking for a while but only on the weekends. I saw the doctor yesterday and she doesn’t believe it’s my liver. She’s testing for iron, thyroid issues, any signs of hormone issues, celiac disease, and ebv virus. I’ve only been with one girl my whole life and she wouldn’t cheat. I’m terrified, lately it seems when I drink water it goes through me. Not understanding what’s going on. I hope some of these tests will shed some light. This is a nightmare that won’t end! This morning I had stomach pains and tingling an my left hand. She said as far as my liver is concerned there is no signs of colligation issues or any enzymes out of wake and the imaging looks good too!

    1. Hi I am sorry to just get back to you, my husband was hospitalized on the 26th and it has been a nightmare for me. That and having back surgery myself has limited my time here very much. How did your test results come out? I am hoping you are closer to getting an answer for your issues, Dee

  30. Hello Dee,

    Spoke with the intern yesterday, she said my liver testing looks very good. Blood work done back in July showed no signs of enzyme issues, collogalation issues. My imaging testing showed no signs of diease. If it’s extremely scarred could that be why they can’t see the scarring? She also said you don’t show tell tale signs your depressed. My response was “I’m not depressed, I’m concerned with my health”. Could I have an iron overload condition. If it’s an iron overload condition I’m in trouble because I drank. She’s sending me for some hormone testing, I told her I’m tired alot and losing hair, lost my sex drive. It’s obvious that my issue is liver related because my symptoms are showing something like a liver issue. It just shows that Liver diease is very hard to diagnose if the lab work doesn’t show one. She’s doing a blood test / Urine sample for TSH, Creatine, CK, Ferritin, Iron Saturation, Testosterion, EBV virus. It’s clear my liver is causing the symptoms. I’m having a difficult time sleeping now, dream countless times a night and end up waking up everytime I have one. Usually wake up three to four times a night now. I don’t feel tired though when I wake up it’s weird, I yawn occasionly through the day though. I explained to her I drank a lot when I was younger and partied like a idiot. She asked how much I drank I told her roughly 10-15 beers a week, this isn’t something I’ve done for twenty plus years though. Or even five years, I just started drinking like this recently. I know it’s the liver but I’m hoping it wasn’t caused by drinking, because if it was I have to go to AA for six months before they’ll even consider a transplant. I knew I shouldn’t of listened to the doctors and went when I first got ill. If my health takes a turn for the worse I’m sckrewed because I didn’t go earlier. She said it would take drinking a micky everyday for a long time in order to mess the liver up. Which is incorrect according to many hepatologists. If you have a bought with Alcoholic hepatitis it can cause cirrhosis. Like I said before I think I might have had an underlying liver disorder my whole life. It doesn’t make sense my liver might be shot at my age with my history, unless my family has weak livers or a condition. Worst thing is this diease only hits 10-20% of people who drink chronically or moderatly. I just want to get back to feeling normal and being a dad. I see my little girl smile and I’m heart broken because I don’t know how long I’ll be around to enjoy that smile. She means everything to me and I’m dying in front of her, tearing me apart. When I’m not around my gf I cry myself to sleep. I really messed up here! I noticed a lot of muscle mass lost (Could be lack of Testostorine), comon with liver diease in men. This diease is terrible, what kind of god gives somone the blessing of being a father and then makes the father ill. I hope it’s alcoholic hepatitis I’m suffering from because you can recover from it as long as your liver regenerates. I’m pretty sure I’m suffering from cirrhosis, it’s the only thing that makes sense.

    1. Rob, I have thought a lot about you and wondered how you were doing. My husband was sent by ambulance on Sept 26 thinking he was having a heart attack. He was in the hospital for 5 days, I was exhausted. Sweetie I just don’t know what to say, if all the doctors have said your liver is fine I would go looking elsewhere, your gall bladder? Have you seen a gastroenterologist? I am only saying that because my husband just had his gall bladder removed. He was having back pain, then stomach, then chest, we did not know what was happening. I think you might try going to http://www.medhelp.org. Look under liver, there are many many helpful people. I wish you all the best. I would like to hear how you are doing when you finally find out what this is. Yes your liver can regenerate. Mine has, I had a biopsy which showed the beginning wisps of cirrhosis, the Ultrasound also showed it. Two years later it looks great. Please keep in touch, Dee
      There are a lot of different communities there and they may be able to help you pin point what the problem is. I am only one person and feel I am failing you.

  31. Hello Dee,

    How’s Karen doing? I hope all is well with her. My symptoms I figured I might as well list below.

    Symptoms started in April 2015
    1. Black tarry stool
    2. One bought of white stool (Haven’t had it since)
    3. Fatigue
    4. Loss of appetite
    5. Noticed I had a red palm on a few occasions (Seems to have gone away)
    6. White dots on the nails (Luek)
    7. Weight loss / muscle mass lost
    8. No sex drive
    9. Sleep more than normal (Use to only sleep 5-6 hours and feel rested)
    10. Noticed what appears to be liver spots appear on the skin
    11. Red circles (They went away)
    12. I noticed these red marks (They looks like skin tags kind of)
    13. Hair loss
    14. Minor chubbing (Not really noticeable unless you’re looking for it)
    15. Constant washroom vists (Urine of course)
    16. Wake up about three or four times a night while sleeping for no reason
    17. Excessive dreaming while sleeping
    18. Mood swings (Could be because of the lack of sleep)
    19. Broken blood vessels on my skin
    20. Fluid retention (Minor) / Easy indentation
    21. Skin goes from a normal pigmentation to a yellow pigmention at times
    22. Dry eyes / Mouth
    23. Night blindness (Seems to be getting better)
    24. Upset stomach/smelly stools (Probably a Malabsorption issue)

    It’s obvious my liver is responsible, I don’t understand why I can’t get diagnosed and begin treatment. It’s scary that modern testing and imaging can’t pick up on it. Years ago I coughed up blood, i’m wondering if that was the first sign of liver damage. Or do I have Cystic Fibrosis which has caused damage to other organs including my liver. As far as I know Cystic Fibrosis doesn’t run in my family, but you never know.

  32. I have acute hepc and 3rd stage cirrhosis and was told liver transplant was necessary how many years can I live with this. My mind seems to be going and I’m tired all the time but feel if I stop working hard I will be useless anyways. I have to take lithium and trazedone due to few trips to institution but see no way for me to just stop no matter what

    1. Oh….so sorry to hear this. Are you on Lactulose to help you think? Without it ammonia builds up in your body and goes to your brain.
      When you say 3rd stage cirrhosis I am a little confused. There are normally 4 stages to liver damage and the different stages refer to how much scarring and fibrosis there is. A lot of time people call it all cirrhosis. Only stage 4 is cirrhosis. So are you saying that you are past Stage 4? Like stage 5? Sorry I am not a doctor. A lot of times people will say they have stage 2 cirrhosis when actually they are stage 2 in the level of damage. I appreciate your help with this. I was told if I did not get rid of HCV I would need a liver transplant in 5 to 10 years. That was in 2008. I was finally cured in 2012 and I am improving every day. I am not saying it is possible for everyone but improvement is possible depending on where you are in Grade and Stage from the biopsy and/or blood work.

  33. Hi Karen,

    I went throught the pegintron/ribavirin treatments for hep c about 12 years ago. It worked for me. But I was left with severe chronic fatigue syndrome. Very long story short, it took years to figure out which diet and supplements worked, I even did 2 1/2 years of heavy metal chelation. I also finally realize now that scarring in my liver is responsible for my symptoms, though I don’t really have any of the classic symptoms of cirrhosis like jaundice, ascites, edema, etc. Anyway, I did not read through every comment above to see if it has already been suggested but I wanted to pass on an idea to you. Enzymes like serrapeptase and nattokinase can dissolve scar tissue and some people are using them to treat cirrhosis. I am starting a supplement with these enzymes in it to see if it will help my own symptoms.

    You know, the one word in your article that literally gave me chills was “decompensation”. I have only heard that, and rarely, in connection with adrenal fatigue and chronic fatigue syndrome. I have experienced what can only be described as a “quick decompensation” a few times in the past thirteen years from exerting myself and it is the most horrible feeling on earth, it is absolute torture. And after the first time, you know that when it happens you are looking at a couple of years of effort to climb out of it. My whole life is centered around making sure I don’t ever decompensate fully again like I have those previous times. I used to do taxes and accounting work but now I’m on disability and living in the Dominican Republic because domestic help is quite affordable here, even on disability.

    I am thinking now that chronic fatigue syndrome involves the liver more than most people think. Every food and supplement I take is with the liver in mind. I’m glad you have this article and I just wanted to make sure you were aware of this enzyme approach to cirrhosis. Thanks for the article and good luck to everyone struggling with this.

    1. Hello there! Thank you so much for sharing. I have also heard of the systemic enzymes. I have tried them in the past for months at a time. I also did the peg and riba and I suffered for years with fatigue, lethargy, it was awful. I thought I would never be well again. It has now been 3 years and I am feeling better, that or I have gotten used to the new me. That would explain my mess of a home LOL.
      About the decompensation, if I were you I would look in to that more. I have heard of people who completely change their diets, no read meat, no fried foods, or fast foods, or processed foods improving the health of the their liver. Also, a little exercise is good, even 10 minutes a day can make a different. I walk every day in the hope that it will get my blood flowing and make me feel better. Interferon is awful, I lost all my hair and it took years to improve. If you would like to talk to others in similar situations there is a site called MedHelp, Post treatment. Also I took NADH for a long time after treating, I think that helped me.
      Thank you so much for sharing. Your story can help others, good luck, Dee

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