Your Turn

Your Turn to tell some stories of how you have coped with Hepatitis C and Cirrhosis. What have you learned that may be of help to others?

How did treatment and side effects go for you? Are you dealing with ascites or portal hypertension? Did you just find out you had HCV?

How did you overcome an obstacle? Is there a poem or story that we need to hear?

This is the place. It’s Your Turn.

28 thoughts on “Your Turn

  1. I became aware of and began understanding my hepatic encephalopathy at the end of my 40 week treatment, although I started taking Xifaxin 6 months into the treatment. In my case, it involved most notably, in addition to the brain fog, talking gibberish to myself. It was really interesting each time I spoke to myself, I became instantly aware of just what I was saying. I would awaken and repeat it aloud while laughing out loud about it. I found it very humorous. I also had a behavior of physically typing keystrokes and making mouse movements on my chest while sleeping. I have been using computers since 1977. I was a professional and successful programming consultant for over 20 years during the 20th century. (mainframe computers)
    I have been using PCs since 1979.

    Xifaxin has been very effective, completely eliminating the gibberish self-talk and most of the confusion. I remain fully disabled related to work; I am simply unable to be present in any environment other than my own home where I do not need to maintain someone else’s expectations of my behavior and productivity.

    Fortunately for me, I achieved SVR, a complete absence of the HCV virus which is as close to a cure for HEP C as you can get. I still have COMPENSATED cirrhosis but very few if any symptoms other than continuing HE, which is under control. I am left with severe peripheral neuropathy due to prolonged edema of the feet and ankles. Both feet are permanently 80% numb and my left foot is largely paralyzed. I take lyrica, very effective. I can walk with only a minor limp.

    My other prevalent condition is a major deficit of attention. I have 100 different things I want to do, most intellectual in nature, but can not stay on one task for more than one hour before I get distracted away from the task.I have been studying medicine on the internet, using tutorials and readings. It is so fascinating. Biology, anatomy and physiology are so amazingly logical and orderly.

    I want to talk about my mental connection with IV drug use, the original cause of my hepatitis, but I am still seeking a place where I can discuss my feelings comfortably. I hate 12 step programs and dislike religion. I believe science is the source of understanding and spiritual fulfillment. I was in AA for 5 years from 1977 – 1982. It got me clean and I stopped going to meetings and never looked back. My abstinence has been 99.9% from 1977 until today. I have been on methadone maintenance from 1976 until now, off and on but mostly on. I have much to talk about but I don’t know where I can do that.

    Generally I am content and very comfortable. The absence of HCV has allowed my body to settle into an unbelievable state of equilibrium. I feel like I am 35, although I am actually 60.

    Thanks, Jim

    1. Jim – I think anyone with HE can totally identify with your experience. It’s a good thing you have experience with technology. You can work when you can, and rest when you need to. The neuropathy is another topic altogether. 80%. Bless your heart!

      One of the things I love about our little community of love is that we do NOT have to maintain an expectation. We understand that sometimes we have full access to our brains, and other times… well, we talk gibberish! While I don’t have to like it, I can certainly see that it is all part of where we are living for now.

      I’m like you in that so many things are interesting, but nothing can hold my attention for long. It really makes for an interesting life as long as you stay curious. It sounds like you have a lot of curiosity about science. I do too. Have you watched Through the Wormhole? I saw an episode and was captivated.

      Congratulations on your success with treatment and staying clean. Even though our body is under stress, it’s good to know that we can still learn and grow. I’d love to hear more of your “talk” and invite you to tell your story here to our best friends.

      There are so many points of view. It would be cool to hear your perspective on your experience with all of the areas that you spoke of. You can tell that I like to keep it optimistic and I can tell that you are a positive thinker.

      Thank you for stopping by. I hope to hear more from you soon!
      xo Karen:)

    2. Hi Jim:

      I just been told that i have hep c and i think I have had this for over thirty years. I am terrified. All I think of is a death sentence coming. Any advice?

      Thanks,

      Pam

      1. Pam,

        I’m glad that you wrote. I hope you’ll hear from Jim too. I hope that your doc is ordering a series of blood tests for liver enzymes. A biopsy and other tests can detect the stage of liver disease you are in.http://www.ihelpc.com/what-are-the-4-stages-and-symptoms-of-cirrhosis/

        This is NOT a death sentence. I was diagnosed end stage 5 years ago and have outlived a 2 year death sentence. I plan on being here another 20 years and YOU can too hunnyo. Keep reading…. It’s scary stuff, but don’t let the fear overtake you. Get proactive and kick Hep C’s butt.

        xo Karen:)

      2. Hi Pam,

        Yes. I do have thoughts I can share with you.

        First of all, let me make this perfectly clear, your diagnosis is not a death sentence. I was diagnosed originally in 1985 before Hep C was even discovered. At that time the disease was called “Chronic persistent Non-A, Non-B hepatitis” (quite a mouthfull!). I had a biopsy and they found cirrhotic tissue and that was 30 years ago. I am now 62 and I feel better than I have felt since I was 30. My virus has been gone (undetectable) for around 3 years since January, 2012.

        It has been an amazing ride. During the first 25 years from my diagnosis in 1985 until I met my current gastroenterologist in 2009 I received no treatment and I thought I had no symptoms. Starting in 2009, I began to receive attention for my newly named Hepatitis C. I was tested and my viral load was, at that time, extremely high, somewhere in the hundreds of thousands. Keep in mind that the virus had been in my body probably since the late 1960s when I was infected most likely by a shot of heroin using a shared and infected needle and possibly water from the local brook in the woods of Englewood, NJ, where I spent much of my time with other users.

        I have much more to share with you, Pam, but I need to stop writing for now. I hope to continue in a day or two.

        Best wishes for a long and healthy future full of beauty, joy and exuberance,

        Jim Gordon

  2. July 31, 2014 = I stumbled across your site while looking for healthy recipes for a not so healthy liver.

    My husband has Hep C. He was diagnosed in 1997. But he believes he got it in the 60’s. He was an alcoholic but has been sober for over 20 years, he stopped drinking about 4 years before the diagnosis.

    He tried the interferon for 6 months or so. The side effects nearly killed him. But he kept on. The doctors said he was not a canidate for ribavirin combo, he liver enzymes/hormones were not changing at all. They wanted to give him a transplant. He did not one. His thinking; let some young person that has their life ahead of them use it. I will only kill the new one. We had 3 doctors refused to treat him because he didn’t want a transplant. And the docs gave him six months to live. He is 63 years young now. I guess he fooled them. We finally found a gastro doc that listened to us and is treating my hubby how he wants to be treated and has been treating him for over 8 years.

    He now has cirrohosis and is not far from cancer. The liver has shrunk to a 1/4 of its normal size and his spleen has now begun “eating” his blood. In the last 6 months he has had about 12 pints of blood. He is making enough blood, but the spleen doesn’t like it running around in the blood stream.

    He has had a great attitude for these past many years. However, he is getting worn out from the constant low red blood cells, and the pain. I was greatly pleased to read the comments about the liver/spleen pain. That is exactly what he is feeling. Ever day, several times a day or even constant. It puts him down. And when I say down, I mean down for the count. Sleeping almost constantly even after getting a couple of fill-ups (pints of blood). I told him I was going to have the blood/cancer doc put in a dip stick to check his levels. HEHE. If you can’t laugh you will cry.

    We will continue to live month to month, day by day, minute by minute…
    Thank you for your site. I will continue reading as I can. Again, Thank you.

    Patti Bell
    Grand Rivers, KY

    1. Patti,

      I can sure identify with your husbands symptoms. It is very discouraging to live with end stage liver disease. He helped himself so much by quitting drinking. Finding a good doctor is also a big plus! With the new drugs, the side effects are not near as severe. I know that if I had not treated, I would be dead now. If his doctor offers him the short treatment drugs, he may have to be willing to get a transplant though. Treatment can be hard on the liver.

      As you probably read, they found a tumor last month. One of the things that is in my favor is that I cleared the virus and my liver enzymes are pretty good. That is because I have not had Hepatitis C for almost 3 years now. I TOTALLY get him. No one wants a transplant. I’m really scared of a long surgery. I don’t like the idea of a lifetime of anti-rejection drugs. But you know what? I’m going in to spend a week getting put on the list this week. My granddaughters and daughter are going with me. I’m working really hard to prepare myself mentally. Not easy, let me tell you.

      Your husband has made a lot of progress. There are still some options out there for him. In the end, we all have to decide what battle we will fight. It is a fight either way. It makes me laugh to read your post though. I can hear your great attitude. The Hepatitic Ecephalopathy is making him sleepy and you are keeping your head high. I laugh to keep from crying a lot too. It works sweetie! Be sure and take care of yourself. All my love goes into each post. We need each other to keep our spirits strong and enjoy each day and minute.

      Thank you for writing from your heart,
      xo Karen:)

  3. Hi Karen
    What a blessing you are, I thank you for this site and an opportunity to be able to express.. How one feels about being hep c positive.. Well I have been in denial about the entire fact that I have hep c..(lol) to such an extent where I actually believed it would just go away.. How embarrassing for me and especially when I come from a medical back grown .. I contracted HCV (28 years ago) after the birth of my first son .. During my routine pregnancy test of my second child 8 years later) I was told I had the virus.
    I changed my life style and dietary regime I went yo university to become a chinese medicine practitioner. I practised for 15 years and in all of that I tucked the virus away..
    Last year in October when a cyst burst in my ovaries, it was there that they discovered I had liver scarring and I need to pay attention to what was going on.. I feel my diet and life style change kept my alt liver enzymes at bay over the years. However when marital stress entered into my life.. I started smoking ciggarets and drinking black coffee to help me cope with what I was going through. But then this year in July that all changed when all the results came back .. Meaning viral load far to high, genotype 3 a and 11.8 on the fibrotic scan .. With the doctor expressing you have liver cirrhosis and treatment needs to start immediately .. So Karen when I cam across your site i must say it was inviting and interesting and thank you.. I start my first treatment on Friday the 17 October interferon and ribavirin and I hope and pray that my journey for the next 12 months is going to be as good as my nutribullet smoothies and juices .. I am scared , I have the support but not my marriage as I decided I needed to do what is best for me now.. Painful as it was and is to leave a marriage after so many years, I feel god has his plan for me and this journey needs to be done in my own space with safety and clarity!

    Cheers
    Blessings
    Cell

    1. Cell,

      We have a lot in common in that we used nutrition to keep the virus at bay for years. I didn’t know I had HCV, but knew that I felt better with good food and lifestyle. I am so happy that you are getting the treatment. It is not an easy choice to put the drugs in your body. It was the BEST choice I ever made though. Now I have been Hepatitis C free for over 3 years. Sure it is scary. You don’t know how you will react physically, mentally, or emotionally. But by staying determined to GET THROUGH the treatment, you can endure anything.

      My marriage failed also. A lot of it was because I was so sick. I am sorry you are having to deal with that, but you know that it was part of God’s plan. You have to feel safety while on treatment. Anyone or anything that holds you back should not be in your life. It sound like you can surround yourself with loving and caring people.

      You’re a smart cookie. You’ve done a lot of your homework and are prepared! Your education will certainly be helpful to you in many ways. With the good nutrition and your beautiful positivity I am convinced that you will be free of the virus within weeks. Remember that once it is undetected within weeks, your liver can heal. Now the Riba and Interon cause other side effects, but your liver is getting a break immediately!

      All my best to you and thank you so much,
      xoxo Karen:)

  4. Hello Karen lovely to hear from you !
    Yet again your words of wisdom and encouragement is certainly a god sent.
    I started treatment on the 17 October I was blessed to be given the PEGLNTRON clear click , and consuming the wonderful rebetol (RIBA) 5 times per day. My first night was oh so interfering I could say lol . I felt like I. Had been hit by a bus, however 4 later I am feeling fantastic.
    Which is due to my diet.. And I urge others to do the same because it makes a huge difference emotionally and physically .. So blessings sent my way from down under melbourne Australia . I look forward to speaking to you soon
    Cheers
    Cell

    1. Hi Cell,

      I totally love your play on words. You def will feel the drugs begin to interfere with your life. BUT looking to be undetected is so worth it!
      It’s so good to hear that you are able to begin treatment and that you are feeling fantastic. I think the diet is everything too. I’m looking to make some changes with the recipes so that I can begin to add more. Much love to you dear heart. xoxo Karen

      1. Hi Karen,

        I found your website looking for healthy juicing for my liver since I as well have been diagnosed with Hep C genotype 1 and cirrhosis. I have just completed my 12 week treatment with the new drug called Harvoni. Today my Dr said my virus is undetected and the cirrhosis is controllable, I must give all the glory to The Lord! My energy levels have increased dramatically and there were zero side effects .

        After reading mostly all of your conversations posted, I found that I really am not alone! I enjoyed reading your comfortably numb section I thought WOW that’s me. Thank you for the website and I pray that all of our friends will continue to have hope and seek The Lord.

        That’s all for now but I look forward to hear from you.

        1. Hay Dave,

          It’s cool to wake up and see that you found the site. Miracles happen every day and I’m so happy that your faith was rewarded! Congratulations on the low liver disease. You’re in a great spot to move forward with your life! The diagnosis is a gift in many ways in that it jars us to wake up and live our best life every single day!!

          I know that God has something awesome in store for you. Keep seeking and stay in touch as you discover what that is!
          xo Karen:)

  5. Hello Karen. I see the interventional radiologist tomorrow for a consultation for my TACE procedure. I received my MELD score from the Liver Transplant Coordinator today.
    They assigned me a 22 and said I would earn 3 point every 3 months. Possible time for transplant in January. Scared about all this. It just does not seem real. I have not shared with my family, only my wife. I just don’t know how to tell them. Is there any workout I can do to make recovery easier? I walk twelve miles a week at a brisk pace and do push-ups and plank position. I am just rambling now.

    1. Hi there, thanks so much for writing. It sounds like you are doing really well to build yourself up. It is a really good idea. There is another article on here about exercise. In fact Karen bought a small trampoline as that is supposed to help quite a bit. There are many good articles on here. If you need help finding anything or just have a question please don’t hesitate to ask. We are all in this together. I think together we are much stronger than alone. There is alot of information about transplants on here. I think it must be so overwhelming. Try to break everything down into tasks. I remember when I had a long commute I would just break it down to one leg at a time, get to the baby sitter, I would not think about how long it would take once I got there. I just focused on getting there. I know it does not compare at all, it is the only example I can think of this morning. On my first cup of coffee haha Take care. Please keep in touch. Dee
      I am praying for you.
      I don’t know how much you have read here but here is one about the TACE
      http://www.ihelpc.com/tace-for-liver-tumor-from-hepatitis-and-cirrhosis/

      1. Thanks for the prayers Dee. I am troubled about telling my Dentist and Peridontist. I have never disclosed my HCV to them. I need to have a crown and to get paperwork signed that I’m okay for surgery. I have not ever been able to admit I have this virus. I feel so guilty.

        1. Hey there, please don’t feel bad. I completely understand and I am sure others would as well. You don’t want to be treated differently and I understand that. It is your right to disclose or not. Your dentist and periodontist is supposed to act as if every one has some type of virus or disease. They are required to protect themselves. I think you should trust what your gut is telling you. I know many people, myself included, who thought they could disclose their HCV and were dismayed by the response. I freely told people and was shocked by the ignorance even my GP was clueless about the HCV causing low platelets. I do feel that we all should be more honest as we have an opportunity to educate people on HCV. I don’t know that I could have done that while sick with the virus, but I do now. I am trying to pay it forward by helping those coming behind me in their diagnosis and treatment as people up above reached back and gave me a hand up. This is all normal. I am told cancer was originally treated this way I also remember HIV/AIDS being like this. As people are educated and evolve they will understand as well. I try to think that we are pioneers working our way by stagecoach to the land of SVR = cured. I hope this doesn’t sound too silly. I try to tell people of ways that HCV can be transmitted. I shudder every time someone close to me gets a pedicure. Well, I have written way to much. You take care and I am praying for you RS, Dee = Dorene
          p.s. I had to get several root canals and crowns while I had HCV, I did not know I had it.

        2. Robert,
          I really hurt for you on this one. Have you read my blog about being ashamed of HCV? http://www.ihelpc.com/are-you-ashamed-of-being-judged-for-having-hepatitis-c/ Check it out… let me know what you think about it.

          If your dentist is anything less than happy for you.. find another dentist. Come see mine! I promise you will be cared for unconditionally. You deserve that. Go in. NO explaining or over talking it. Tell them and then be silent and breath. DO NOT tell yourself a story about what they are thinking. ok? I’m being all bossy big sis here. You will take that off of me cause you know I love you, right?
          Rest dear one. You have enough to think about without worrying over that. Let it go. Let me know too.ok?
          xoxoxo Karen Ruth You Better Not Mess With My Best Friend Hoyt

  6. Thank you so much for your reply. I was hoping you would see my post. Your an angel and it makes me feel better to read your post. May God Bless you today and always in all ways!

  7. Hello Karen. Thanks for all the kind words and encouragement. You are exceptional!
    I am really struggling with all this. My life goes on as normal. No outward signs anything is wrong. A voice tells me maybe the doctors are being too aggressive, that they want to transplant a healthy patient that will have positive results to show how superior their care is as a group competing for results at the Medical Center. Then I tell myself no they couldn’t do that. Then I hear that tumors light up with the contrast during CT scan due to increased blood flow to the tumor and mine is hardly discernible. Not a moment goes by that I am not thinking how this will change my life. Will I recover, will I get most of my life back after 2, 3, 4, 6 months or never? Doubt and uncertainty is weighing on me. Is this what I need? Is it right? I have been told yes. Then I think about the circumstances that brought me here today and how grateful I am that the tumor was caught before it became too large for transplant. Sound familiar? I am a mess.

    1. Hello there! I understand how you feel. I used to wonder that too, am I really that sick. Do I need to treat my HCV? So many questions. I am glad that your tumor is small enough that you can stay on the transplant list. Karen had to have a few treatments to keep hers small enough to stay on the transplant. Everyone reacts differently to each procedure. Karen is very happy right now, she continues to improve, to do well after her transplant on April 12th. Recovery takes a while but it does happen. Our best wishes go out to you. Dee

    2. Robert, My husband and I are in the same place! I’m so afraid they are being too aggressive. Two years ago he was dying and diagnosed with end stage liver disease and cancer – his 7cm tumor was treated successfully with one Y90 treatment much to his doctors’ surprise. He is on his 2nd treatment for hep c and except for those side effects he feels well and his liver function is normal. His meld is 27 and last week he received a call that they had a liver for him. He declined it. Despite all we’ve been through we weren’t prepared for the call we thought it would take much longer! We know the likelihood of the cancer returning is very high but it’s so hard to go through with this when his health is relatively good. We are simply terrified of making a wrong decision. Marilyn

      1. Marilyn and Robert,

        I hope you don’t mind the dual response. We’re all in this boat together. Your situations are very similar. First, I suggest this blog: http://www.ihelpc.com/i-dont-want-a-liver-transplant/ I was nervous that my transplant team might read this and think I was not grateful. But it was my truth and that’s what this blog is all about.
        I was scooting along fine. With just a few years left til retirement, I thought I had it in the bag. My varies were under control with bandings and I was on a minimum of meds. I cycled 10 miles around Lake Hefner after they found the tumor. I was in top shape.

        As for the MELD, mine was only 7 until I got the bonus cancer points. I wonder if you get to keep your points if you decline. I bet you do. Because I was asked if I wanted to sign the surgical permission even when I was secondary. I think those 2 “dry runs” let them know I was serious. I had another ablation about a week before the actual transplant. I personally feel like they saved my life. But of course we will always defend whatever course of action we take, right?

        I hear the wavering. I did it too. It is easy for me to talk about it from this side and I know that. I totally sympathize with you both. It’s a mental game all the way. I am kind of rambling here and I also posted to Marilyn on the Time for a Transplant blog. In the end it is such a personal decision. I was determined to have a long and healthy life. I did NOT want to lose my ability to be active. I’m working slowly now. I got up to 6 miles on my indoor bike. I went to a funeral today.. drove myself and got around a big crowd.

        I don’t always log on every day lately. I’m glad I did tonight so that I could see your comments. You and your family are in my heart tonight. If it’s any consolation, I praying for you and sending strong heart thoughts. My story is having a happy ending… something I wish for us all.
        xoxo Karen:)

        1. Thank you, Karen! All I can say is I found you when I needed you most. I’ve been researching and reading for 2 years and it’s been a challenge to find people whose health issues are similar to my husband’s. We meet with his hepatologist today. I’m sure he’ll keep his meld score and stay listed at this point as long as they know we are serious about following through the transplant – getting to that commitment is the hard part. We’ve hung onto a shred of hope that his Y90 treatment was a miracle and he will stay cancer free – I understand the statistics and I know that’s unlikely and too risky to chance. We were given time to live “normally” for a year or so and now it’s time to face it all again. I’m as prepared as I can be to support him and I feel a sense of peace that things will work out like they are supposed to. Earlier in the week I was a mess and could barely function with the weight of this! It’s a great gift you have given by honestly, thoughtfully and compassionately writing about your journey! Best wishes to you and Robert! With gratitude, Marilyn

          1. Hello there! Thank you so much for your kind words. It warms my heart when I hear that someone has been helped by coming here. I know how hard it is to have an illness and no one else understands it. You begin to feel alone. I would like to say you are not alone. There are many many people who are in your situation. I pray that your husbands appointment went well. Please keep in touch.

  8. Karen you always put me at ease when I read your response. I’m becoming dependent on you for my validation and value your experience. I believe in the power of prayer also. I will say a prayer tonight for you also. I so much want to know that you are going to be okay and that I can do it also. The chief surgeon told me that even stopping the tumor is temporary. That once you have cirrhosis that they will just pop up and that it may take a couple of years but they come back. I am going to re read your post about I don’t want a transplant. May God Bless you with strength, good health, and love.

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