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

46 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?

    Angela

    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.

    Don

    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!
      Karen:)

  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.
      Karen:)

  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!
      Love,
      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.
        Teresa

        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.

      http://www.ihelpc.com/liver-loving-recipes/

      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?

            Thanks,
            Amy

          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

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