About

 About – A Search for a Hepatitis C and Cirrhosis Cure

cat internet liver ihelpc.com cancer cirrhosis
Some days researching liver disease sends me straight up at tree. Other times? It’s purrrrfectly grand to know how to live longer and get relief!

When I look for answers, I want the facts. But I DO NOT want them delivered in a way that scares me or makes me feel discouraged. You do too. I can picture you now. You are staring at the computer screen typing in words that you scrawled on a scrap of paper at the doctor’s office. You go home and try to eat something, but are afraid that everything in the fridge might kill you. Then you type in a search. Highlighted letters show a little bit of what is in the page and you click it as you search for a Hepatitis C and Cirrhosis Cure or Liver Disease.

Giant pictures of nasty looking livers make you want to click the whole thing off.  Not too long ago you didn’t even know where your liver was located.  Now you look down at your belly and probably feel like giving up. I felt that way many times.

So you go eat some oatmeal and wonder if it will make you have ascites. You google “oatmeal good for liver” and decide it won’t kill you in the next 30 minutes. Then you start typing in how to eat. What to eat. What to avoid. What is good for you. I don’t know about you, but not a dad gum thing in my house felt safe to eat at first.

So you look down at your lab work. You type in HGB and a giant word hemoglobin comes up. Some of the explanation makes sense. Most of it just sits on the screen and does not get anywhere close to going into your brain. You type in viral load. You might as well be reading in Greek.  Over the next few months, you begin to understand more of the terminology, but in the beginning those searches are the pits.

Google+ ihelpc Karen HoytYou decide to click on one of the discussion forums. Some poor person is writing about all of their side effects and about how they want to quit treatment. Another person cheers them up and says they have tried treating but were not responders. You’re interested. You keep reading. If you don’t log in, you are what is called a lurker. I was and still am a lurker. You can lurk for hours trying to imagine what these people are going through. You learn a lot. You find out you’re not alone. But if it is depressing site, click the X fast and get out of that screen.

I will have to admit that there are some great articles out there on the web. You can get this stuff straight from the doctors and scientists who wrote it. But you probably cannot understand it without hours of reading and note taking. Then there’s the middle of the road medical websites that put it in pretty simple terms. I like those too. Big letters and plain truth.

I loved Lucinda Porter’s stuff on hcv advocate when I was first diagnosed. Then I began to read her blog at lucindaporterrn.com. She always calmed me down. She knows a lot about medical research. Her experience is both personal and professional. Always calming and available 24/7. I could pick up her book and start reading on any page and feel better within minutes. This may seem silly, but I felt like she loved me and cared about my life. I never dreamed that she and I would become the good friends that we are today. I can honestly say that she really does have a loving and generous heart. 

Then there’s my blog. I took my journals and my desire to help others and started typing right into WordPress. I poured my heart out like a satellite into the universe. You pinged back. I was not alone any more. xo I knew nothing about running a website. Still don’t know much. I’m so thankful for the blogger friends who help me! I had a heart to help others who were in the same circumstances I was in.

During my first months after my liver failed there were long nights searching on the internet. I longed for a best friend who understood what I was really going through. Later, when I had every side effect that the Hepatitis C Treatment literature warned about, I wanted to feel sorry for myself. Did you ever feel like you have gone through something for a higher purpose than you realized? Of course you have. We all know that our own suffering in life has forged strong tools in our minds that we used to survive. I know from personal experience that your stories and research shared here, on forums, facebook, twitter, and google+ have lifted me up when nothing else could.

So I took all of my troubles and spread them out here for all of us. Our shared story of survival is available to anyone who types in a Search for a Hepatitis C and Cirrhosis Cure.

We stand shoulder to shoulder as we embrace life and share our deepest concerns, hardest battles, and the power of love. I hope you feel at home here at the Best Friend’s Guide. I really picture you sitting across the kitchen table from me as we discuss the frailty and the beauty of our lives. There are a lot of good resources on the net. I love pointing the way to them, because I realize that I don’t have all the answers. But I’ve been there and I’m a seeker. Together we’ll find the answers we are looking for.

Most important? Together we find the strength to live our best lives every single day as we continue to embrace a powerful vision of our future.

I had to fill in that “about me” page. xo, Karen:P That’s enough about me. What about you?

How has Hepatitis C or Cirrhosis changed your life? What have you learned on your search?

pic via telegraph.co.uk

22 thoughts on “About

  1. I , love, love your website.

    I am a cirrhosis survivor and had a liver and kidney transplant in 2011. I am a group leader on a cirrhosis site and am trying to find ways/suggestions to perk it up some with positive thoughts, quotes, education. Hopefully, helping people with cirrhosis to see that it is not always a death sentence. Your site is the best that I have come across. I love the way that you interject humor into this site.

    Take care.

    Vivian Roberts

    1. Vivian – I LOVE your comment. You are definitely a good best friend to many who are suffering from liver disease. I love your attitude and your heart!

      What an amazing story you have with a double transplant. I’m very happy for you and ultra glad that you are still embracing life in spite of your difficulties. It is NOT a death sentence. I am learning that it is an invitation to life!

      Laughter is the by-product of a joyful heart. My mom used to say that you’ve got to laugh to keep from crying sometimes.

      Since you clicked on my about page, I had to fill it in! I have to wonder if you are like me in learning about the internet. What is the name of your site? I’d love to visit.

      I hope you have an awesome weekend. Thank you so much for stopping by!
      xo Karen:)

      1. Karen,

        The group is MDJunction. I post there a lot, trying to give the people there who are currently dealing with cirrhosis a spark of hope. I want them to see that as bad as cirrhosis can get that there is always a spark of hope if they will search for it. I want them to see what I went through and what it took for me to make it and to give them the hope and the courage that they can be a cirrhosis survivor to.

        “Never give up” was my mantra throughout my cirrhosis journey, I literally FORCED myself to keep going when I literally felt like I would not be able to take another step. Giving up and wallowing around in my own self pity was not an option for me, that would have been the easy thing to do.

        Early on, I thought of my cirrhosis as a tunnel. The complications that I endured from the assaults of cirrhosis were crashing down all around me throughout the length of my tunnel, I endured them because I was focusing on the bright light at the end of that tunnel, a liver transplant!! I tried to think of each assault as a stepping stone that was bringing me nearer to my bright light, focusing on that gave me hope and the courage to not give up.

        Karen, please visit us at MDJunction. I am active on the cirrhosis, fatty liver and organ transplant forums. There is also a hepatitis c site there as well.

        Again, I love your site, your great attitude and positivity!!

        Take care.

        Vivian

        1. Hi Vivian –
          You are such a bright spot in my morning! Never give up is my mantra too. Some days it does take everything I have to force myself to keep moving.

          I love your picture of a tunnel. It is dark and long most days. Sometimes the light seems dim doesn’t it? But as long as we keep moving toward it and do not lose our focus, we DO have the courage to keep moving.

          I’ll be looking for you at MDJunction this weekend. Isn’t it amazing how much it helps to connect through the web? I am convinced that internet technology has helped to save many lives because of the information and love that is shared in an encouraging environment. It’s a small world.

          Love your enthusiasm more than I can say. xoxo Karen:)

          1. Karen,

            I lost my way from time to time. I certainly had my share of “pity parties” but I realized during some of them that being negative and wallowing around in my grief that it just took more energy than I had to expend on it.

            Being positive about the circumstances that we find ourselves in and trying to find reasons to laugh makes cirrhosis more bearable in the long run. Cirrhosis closes you off , it narrows your world. If you let it, your world becomes all about “me”, “my”, “I”. You can always look beyond that world and see someone who is worse off than you are. You would be surprised how energizing it is for you to do things for others when you are so weak that you can hardly stand, whether it is picking up a dropped cane, putting a grocery cart up for them or holding a door. Those simple, selfless acts move you beyond yourself and keep you going.

            So glad that I found you Karen!! Yes, the internet is amazing.

            Wishing you the best.

            Vivian

          2. Vivian,

            I lose my way on my own website. Sorry not to reply earlier.

            You have a lot of wisdom. We both know that our struggles can make us bitter or better. Those simple acts of kindness do help us to get outside of ourselves. I’ve been writing about that very thing.

            Heart friends who understand – and remind us to be our best selves in spite of our pain – That’s what keeps us going. I really like strong and beautiful women like you.

            xoxo Karen:)

  2. Your amazing my friend… so honored to call you friend.
    What a Pilar in our community you are… TY so much…

    1. Thanks so much for the shout out sweet one. I’ve had a lot of lurking and reading on fb pages while I zone out and recover from the TACE. There are some big hearted, friends who gotcher back and would do anything for you kinda peeps in our community. We all hold each other up. I’m truly proud to be connected with you.
      Have a wonderful week dear friend. xoxoxo Karen:)

  3. I do not think that I have made a comment to your post, “How has Hep C Changed Your Life”…so here it goes.
    Contracting Hep C (was called Non A Non B then) in the early 80’s from blood transusions, I knew within 6 weeks of my ovarian surgery that I had Hepitis. For a year, I was really sick. Then the counts went down on my markers. I felt so good that I went back to work. I was constantly fatigued and had nausea, but I just ignored it. As long as my tests were good, I was ok. They were never normal, so I was diagnosed with Chronic C. In 1998 I was in a trial group for Interferon. I could not make it through the entire course of treatment, as I became so thin and covered with bruises. I still cannot believe I used to give myself the injection at 3:30 (at work) and by the time I was off at 4 and home I would be so sick that many nights I just slept in the bathroom. But, I made it, still working as a school librarian. I had bouts of up and down counts and pain but it was not so much that I wanted to quit. By 2009 I was getting very ill and spent at lest one to two days in ER getting transfusions. The source of the bleeding would not show up. On the first day of school in the 2010-11 school year ( I had retired the summer of 2010 due to illness.) My life changed for good. The hepatitis had taken over my body and I lost so much blood that a hasmat crew had to come and clean my bathroom. I remember saying, ” Don’t call my husband until after 2:30 because it is the first day of school.” I had emergency banding surgery on my esophagus and my Hep C took over my body. I found out I had stage 2 chirrosis at the time an enlarge spleen, and a host of other problems. Now I am still have banding done and sometimes I have to have polyps removed and the area clamped. I am 60 pounds heavier and have days when I do not even know who I am or where I am. There are times I cannot correct my husband’s 3rd grade homework because I cannot think how to multiply. I live with daily fatigue and exhaustion and pain in many places. I am not allowed pain meds or much of anything medication wise. Eating is a big problem, as there are only two of us now and I have a list of forbidden fo ods that take up a binder. My singing voice is gone, I am alone most days. My drivers license was taken away about 13 years ago due to passing out. I still make myself do chores,but sometimes it is so hard that I think I am going to die. Now that all of this is said, I will answer your question. I am stronger than ever and more determined to accept my condition. When my son died in April this year my strength was tested again. So, I am not talking about physical strength, but strength of the soul. My will to live is stonger than ever. I do not like being home, fat, and sick, but I am amazed that I am still alive after 30 plus years of this disease. Spiritual and inner strength have become my matra. My dearest friend and “church daughter” says that it is a good testimony to those around me. I really just feel that it is my goal to “Dwell in possibilities”, to quote Emily Dickenson. Thank you for listening. I am so happy I have found your website and will help you and others in any way I can.

  4. Sheila, I saw your post the other day, then when I tried to come back to it I could not find it. I wanted to say that your story really touched me. I know that it touched others as well. They may not respond but they are here and they are reading. Bless you for sharing. Your story gives me a lot of hope. I know how it feels to have zero energy. II am so sorry that to hear of the death of your son. I can not begin to think of the amount of pain you have gone through. I have two sons and love them so very much. There are many days I wonder why I bother getting up only to sit. I appreciate you sharing with everyone and I hope you will share again soon.
    Dee
    Dee Ernst recently posted…Prayers for Karen – UPDATESMy Profile

  5. I just landed here after finding your video regarding juicing… and I cannot tell you how grateful I am for you being here! I am SO FRUSTRATED right now, and I feel relieved to have found you. Thanks to the universe, that juicing kept coming up in my mind… and my sig other chose to ebay me an Omega this week (SO supportive this man – I am a lucky girl). I’m amazed at the paths that lead us to the things we need the most.

    My husband was in a fatal motorcycle accident seven years ago. As a result, I lost it…. I lost me… and I made terrible decisions. Flushed fifteen years of sobriety, and my relapse escalated to the use of needles… and marrying a POS young enough to be my child…. who was a “recovering” addict (at the time, but that didn’t last). I caved when he told me “you don’t understand”… and decided to play “can’t beat ’em, join ’em”. Hence, I contracted the virus.

    Diagnosed in 2010… my Rheumatologist (I have an autoimmune disorder) then exclaimed that maybe my disorder was kicking the virus’ butt, because my numbers were so low! At the time, I chose to do nothing unless the yearly labs showed a significant change…. last year, they did. My AST was 59 (high being 40) and ALT 199 (32). I chose to attempt treatment via Acupuncture and Chinese Herbal Medicine. The last three months using herbal treatment meticulously seem to have only irritated either my Autoimmune response or my liver itself. My AST is now 274, and my ALT 622. Forgive my language – but I am scared shitless!! I have now acquiesced to the idea of the new treatments available… and my appt with GI is in July…. but what to consume in the meantime? Every single day I have diarrhea, and I keep Immodium with me wherever I go. The fatigue makes Fibromyalgia look like a cakewalk… and I don’t even know what these numbers mean in correlation to how bad it is.

    You’re right, I am afraid to eat. I have a well, and have just submitted my water for testing as I can smell the iron in it… and am concerned about Iron Overload. With my “other issues” regarding boosting the immune system.. I am fricking stumped.

    Now… on to read more here… I think I’ve found “the place” to get the support I need. Again, thank you so much for being here, Karen!!

    1. Hi there, I am glad you found this site, you are right, your numbers are very high. In comparison my LFT’s were double and I was going in to cirrhosis by the time a biopsy was done. Until you see the specialist I would stop all of the herbs and supplements as they don’t seem to be helping. I know that when treating our HCV we are urged not to take anything without telling our doctor as they can interfere with treatment. Depending on which geno type you have there are new medications that are much easier on the body and of a much shorter duration. Try to drink water to help flush your liver. If you think that your water is high in iron or anything else, I would go with bottled water as much as possible. I started that for myself about 3 years ago.
      One drug that has come out recently is Harvoni, depending on geno type and severity of virus can be much easier. i.e. could only be 12 weeks with not a lot of side effects.
      I am so sorry you are where you are. I also tried natural things to try to help my liver for 3 months after being diagnosed, it did not help me at all. I think that juicing is fine as you can get most nutritional substances this way. If I were you I would cut out red meat, fried food, try to eat whole foods as much as possible. I will try to find more information and get back to you as soon as I am able.
      Thank you so much for writing. Bless you
      Hang in there. Dee

    2. I’m logging on and peeking through the anesthesia fog and saw your post. You’ve been through it and have a right to be alarmed about your AST levels. I hate that you have to wait until July.. I used alternative treatment and tinctures until the protease inhibitors were released. My enzymes were high too. All this means is that the virus is doing it’s replicating like mad and your liver is crying for help.
      It feels so freaking powerless. Eating right is so very very smart and it sounds like you are doing everything you can. Keep with the plant protein and several small meals a day.
      Another thing I did during this time to calm myself was to sit in that funky yoga pose on the floor. (In a chair is fine too) Take your left hand and cradle your liver. (on the right hand side under your breast). I said this phrase: Thank you for working so hard. I’m sorry. Please forgive me. Thank you.
      It sounds a little woo-woo. But it kept me calm and medical science even proves that good words are healing to our body on a cellular level.
      Also, spinach has a lot of iron and I kept it low.. Greens are our friends in so many ways and our body assimilates them easily!
      I’m sending all of my very best to you right now. Healthy body… Healing now..
      xoxo Karen:)
      Karen Hoyt recently posted…Coming Home After My Liver TransplantMy Profile

  6. Karen I think you are a gift from GOD and I am so Blessed to have found your site!

    Thank you , Thank you ,Thank you!

    1. Loving you honey. It’s totally a good thing when we connect. We’re never alone. We are blessed! And actually, it was God who told me to pour it all out. Then He sent you by to hear good news.
      xoxo Karen

    2. I agree, she is a gift from God. She inspires me every day with all that she can do. I wish I had a quarter of her energy. Bless you Karen, love, Dee

  7. Karen,
    Thanks for maintaining your support tool and providing such inspirational words and more importantly, HOPE.

    My story – Everything happened so fast that I went to the doctor for a physical in February due to my family telling me I wasn’t looking healthy (Yellowish tint, weight loss, fatigue etc.). We’ll just say that I have since seen at least 7 doctors / specialists and have done every possible test.

    My case is being reviewed by my surgeon through the panel this Tuesday and although scared of the unknown, I’m looking to stay positive for my family, friends and self. Needless to say, I will be undergoing a liver transplant regardless (TBD) due to my MELD score being close to the max. I’m eating healthy but I work on the road so I eat a lot of the same old things, fruit, vegetables, steak, pork, Greek yogurt etc. and it’s getting kind of old. I love that I found your site and will try some of your recipes (thank you). For times I don’t have the ability to cook, do you know of any reputable services out there for pre-made meals or meals I can make in bulk and freeze?

    You really have a great sole and it’s great that you’re doing what you do for people…inspirational.

    Although feeling tremendous fatigue, sleep has been nearly impossible so I’m looking to improve my diet even more than today. I’m 44 and about to start a new chapter in my life and until I receive my transplant and well afterwards, I plan on being the healthiest person I can be.

    Thanks again!
    CW

    1. Thanks so much for taking the time to post. I also responded to your email. I’m glad you’re getting the medical care that you need. It is a good thing to put yourself under a team you can trust. If they’re already running you through the transplant process, you’ll have a coordinator soon. That person will be a great go-to with all the questions regarding your listing.
      Don’t be surprised if they are not as picky about your diet as you are. Some of the hospital food was the most sodium laden stuff in the world! Stick with your best low sodium, plant based protein to keep your liver and kidneys calmed down. One down side is that eating healthier actually lowered my MELD score. It’s a great topic to take up with your surgeon. I’m wondering if you’re on medications like diuretics yet?
      All my best to you during the process. Everything is possible!!
      xo Karen

    2. Hi there! I see that Karen has responded however I wanted to say that while you are waiting there are many things you can do. Cut out red meat, fried foods,pork/ham, processed foods and limit your salt. Everything you eat or drink has to go through the liver, please keep in mind when you are eating or drinking. I have cirrhosis I drink a lot of water to help my liver work better. Every morning I have a protein drink to keep my protein levels up so I don’t shrink away. You could try Ensure with ice cream though I know another person who was diagnosed with Hepatitis C and he was told no fats, no mayo so it is a balancing act. You have to eat something in order for your body to survive, just be picky 🙂
      Do you know what is attacking your liver? In my case it was Hepatitis C, other people may have had too much to drink. Some people have a hereditary condition.
      It kinda goes without saying that you should not drink alcohol. I have a friend who has cirrhosis from Non Alcoholic Liver Disease and she has been asked to stop all alcohol and to eat a liver friendly diet. Karen has suggestions on her first page under Liver loving Recipes. If you travel you could always take the small packets of oatmeal. That is very good for us. Take some fruit or those yogurts you can drink
      I am glad you went to the doctor, take care, Dee

  8. Hi Karen, you have some great information on your site thank you so much!
    I have a question for you I wasn’t sure where else to post online and ask.
    I’ve been having problems over the last 5 months with bloating and breathing trouble like the bloating feeling is making it harder to breath.
    I’ve been back and forward to the Doctors and they’ve just given me pills for constipation and acid reflux as I’ve suffered from reflux in the past but it hasn’t been that bad as of late. My bowels changed around the time all this happened in the past 5 months, The bloating and breathing all started after a big night out drinking i woke up the next day not to well and didn’t recover for a a couple days, though this was the first time I’d had more than 1 drink in months..
    I went back to the Doctors this week cos I’m in the middle of studying for exams and I wanna get over this bloating feeling, I’ve found pressing in my right lower stomach right under my right rib feels uncomfortable when I breath in like taking a deep breath it’s kinda from the middle to the right side, but not on the left side…
    I don’t have any sharp pains on the left side only when pressing on it right under the right rib i get a bad feeling..
    I believe this is where my problems are i pushed the doctor and she’s sending me for a Ultrasound this week. I’m 34 year old male have drunk abit in the past not these days though and have worked around herbal products that i breathed in for a couple of years.
    Does applying pressure on the upper right stomach under the rib and middle part sound like Liver damage to you? also do you think it will show on the ultrasound?
    If not should i push for a CT scan? I’m going to try some of the things you have suggested on your site.
    I cant wait to get the ultrasound this week as I’m in the middle of exams and have all this on my mind..
    Be great to here what you think about this
    Thanks!!! Dwayne

    1. Hi Dwayne,

      It is def suspicious that you have pain on the right and not on the left. That is for sure the location of your liver. I know during liver pain time, when my liver was sick, even a full stomach made me feel achy on the right side.
      Sometimes we have to push hard to find out what is wrong and why we’re hurting. Many of us go to the doctor for years and feel like nobody gets it. It’s so scary to know that SOMETHING is wrong and not have a diagnosis.
      You’ve worked so hard to figure out how to take care of yourself. I totally admire that and hope you find the answers you need. Keep me posted on what the doctor says!
      xo Karen

    2. Hi there! I am so sorry to hear about what you are experiencing. If I were you I would try to get another doctor appointment. If you think this is liver related you should see a doctor who specilizes in the liver. Primary care normally don’t know alot about it. Have you had blood work? I hope the ultrasound will help but if it doesn’t please don’t give up. You know your body. Something is wrong.

      I have a friend who was holding on to fluid in her feet, and she was coughing quite a bit. She had to sit up in her recliner to sleep. She went to the doctor who at first was just going to treat her symptoms of coughing. Luckily she was sent to a heart doctor who discovered she was going in to congestive heart failure. She had to quit drinking, is taking a diuretic as well as another medication and doing much better.

      I hope you find out what is happening, good luck Dee

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