Famous People with Hepatitis C

Famous People with Hepatitis C
pamela anderson hepatits c
I didn’t look this good before Hep C treatment

I did not even know what Hepatitis C was when the doctor first told me that I had it. Just like you probably did, I went online when I was released from the hospital. I had always been a Judd’s fan. My daughter listened to them all the time and saw them in concert! I remember when Naomi Judd was diagnosed and retired. We were sad, and thought it was a strange blood disease that nurses got somehow. There was no internet at the time and very few people knew what the Hepatitis C Virus was.

When I looked at the list of famous people with Hepatitis C, it was surprising! Steven Tyler was actually appearing on American Idol that fall. I never missed an episode. Watching him week after week gave me inspiration that I too might beat the Hep C virus. He had always been skinny, but he still looked good and seemed so happy. He did not publicize his ordeal a lot in the press, but what I learned was that he went through treatment with Interferon and Ribavirin. He talks about crawling up the stairs when he couldn’t walk from fatigue.

It destroyed his marriage to an Oklahoma girl that he had been with for years. I knew her family and he actually came to our little town for holidays. As far as HCV, he spoke of the harsh side effects and it was a warning to me: be mentally prepared for the fight of your life. I kept thinking that if he was allowed to treat, why couldn’t I? I had Stage 4 Cirrhosis. I am sure his liver was in bad shape too. Yeah, he became my hero.

Evel Knievel  had also been a big part of my life. We lined up in front of the television in our living room to watch him perform his motorcycle stunts the whole time I was growing up. I actually went to the Snake River Canyon years later and was in awe of his vision to entertain people like he did. Too many injuries led to blood transfusions and Hep C. He had a liver transplant, but it was too late. He died of liver cancer, which scares the you know what out of me. 

David Crosby had liver transplant and bravely tell his story of Hepatitis C. Their Déjà Vu album got a lot of playtime at my house. Dad loved them and we harmonized often to Teach Your Children and Our House.  deja vu crosby hepatitis c

 Christopher Lawford, besides being a member of the Kennedy clan, was always a public figure as an actor. He became an important advocate and activist for Hepatitis C and his book has helped to create a lot of awareness to drug addiction as well.

Natalie Cole has captured all of our hearts for generations. My parents loved her dad. Her battle with drug addiction and Hepatitis C is well chronicled. She is very outspoken about her experience. Together with the American Liver Foundation, she and Gregg Allman work tirelessly to bring the plight of the hidden epidemic to the public.

Etta James’ story broke my heart. Her song At Last became a favorite after hearing it on the Northern Exposure soundtrack. She battled a heroin addiction and later painkillers. She died too young.

David Marks of the Beach Boys had treatment for Hepatitis C and is SVR. He leads a healthy lifestyle and is still going. Who knew that?

This list is NOT in order of importance. Can you tell? I saw the Allman Brothers Band back in the day and had a copy of their Live at the Filmore album. Who can forget Eat a Peach? Their songs were the backdrop of my teen years. There are still times I feel like I’ve Been Tied to the Whipping Post. Gregg Allman is now an outspoken activist for HCV and is still touring! I learned while writing this that a biographical movie is being made soon!

allman tuneintohepc
Live at the Filmore Tied to the Whipping Post?

 Keith Richards Rolling Stones talks openly about having Hepatitis C and I read everything I could get my hands on. He claims he cured himself. It was entertaining and brought me some hope, but I can honestly say that his methods are not for me. He’s a crazy son of a gun and is still rocking!

Dusty Hill was another surprise for me. I saw ZZ Tops a few times. I liked the early stuff. He treated and remains undetected. Can you believe they are still touring? That will give you hope for sure!

Billy Graham is a Professional Wrestling champion who treated with Interferon in 2011 and remains undetected! He is doing well and is a survivor!

Mickey Mantle is a famous Oklahoman. We are proud of our big league Yankees Baseball Player. He was handsome, talented, and born in Spavinaw, Oklahoma. It’s a little bitty town near Spavinaw Lake. What I did NOT know until a few years ago was that he also had Hepatitis C. He had battled alcoholism which fueled the Hep C. He received a transplant.  Sadly, he got liver cancer and died not long after the Alfred Murrah Federal Building was bombed. He helped raise money for the survivors and became a voice for organ donor groups.

Allen Ginsberg came to my attention as an author and poet. He was part of the Beat Generation, a literary movement that helped inspire the Hippie counter culture movement. I am a Bob Dylan fan and know that he and Allen had close ties during the early years.

Gomer Pyle – Who knew that Jim Nabors had Hepatitis B? I could not find any information about his treatment, but he married his partner in 2013, so he must be doing ok after his liver transplant. I’ll bet he treated for it. I loved the Andy Griffith Show and Gomer was a fave, along with Goober.

Pamela Andersonlast but not least, she openly talks about getting it from sharing a tattoo needle with Tommy Lee. The Bay Watch Babe is still going strong! I wonder what she would be like with Riba Rage? And how does she keep looking so good?

This sums up my short list of famous people with Hepatitis C. Many of us Baby Boomers remember all of these celebrities. We grew up with them. I never dreamed we would have something in common like Hepatitis C. Somehow it does inspire me to see how they have dealt with it. Some are survivors, others have passed on. But we will never forget them. Knowing that they suffered from the same symptoms of liver disease or Cirrhosis gives me courage. Hearing of how they beat the virus with treatment surely brought hope to me. When I hear that many got a transplant and are still going, it makes me know that if I have to have one, I too can Dream On of a life beyond Hep C.

If you would like to learn more about treatment  or healing liver damage click here!

Check out the video here.

I am a fan of of all the famous people with Hepatitis C, but it is the unknown people like you that I am best friends with too. I am also YOUR biggest fan in the battle against Hepatitis C and Cirrhosis. Xo Karen:)

Pics via Wikipedia.com, infectiousdiseasesjls.blogspot, pophistorydig.com, celebrity goodeeds.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

93 thoughts on “Famous People with Hepatitis C

  1. I want to know & learn all I can, But WHY is it sooo hard to find sound. Info on this major major epademic!!!? That’s as crazy as this deadly disease itself! & those who sjould &could warn & teach the public. R basicly doing nothing! But drag there feet! & it looks like Purposely!!!!!!! The majority of pep have to search endlessly & tirelessly just n hopes to locate sound & detailed info from pep like you, THANK YOU, and prayers of &for Godly healing. to you &those. Who suffer. Joy mcmann Mi.

    1. Joy,
      No weapon formed against you will prosper. What a great promise!!!! I’ve been there, searching through pages on the net. There are some great sites and research and those websites helped me a lot during the last 3 years. Some filled me with fear. I really want love to be the aim here. Love drives fear away, doesn’t it?
      You paid me the highest compliment… Thank you. I feel like I went through every worst possible thing just so I could hold out my hand to YOU.
      I’m glad you found the site. Your supportive comments touched my heart today. xoxo Karen:)

      1. No, Thank you! Prayers of only good and nothing but our LORD GOD’s best for you! Allowing yourself to be used as a Godly tool to help so many is a gift of strengthen, guide and love those of us like myself who I believe our LORD God directs us to your site. love and prayers Joy

        1. Joy,

          You name certainly matches your spirit! I love hearing your joy at finding the best friends guide. You are SO right about allowing God… Alone, I am simply a woman battling health issues. Our connection with each other and God is what gives us strength.

          Your comment brought so much joy to my day. Much much love to you, xoxo Karen:)

        1. As far as I know she does. She has never publicly stated that she received treatment. You have to wonder how she’s doing, because nobody really gets by with a raging virus like Hepatitis without some liver damage. xo Karen:)

          1. I would think that she would get on the Harvoni MAMMOTH PINK ELEPHANT Train!!!
            I had Hep-C since the mid 80’s
            Did the RAT POISON infa/riba tx for about 6 months but liked to DIE from the HORRIBLE side effects!!! Gt 1b Fibrosis alts/ ast WAAAAAY in the HUNDREDS!!!
            Took Milk Thistle & other liver supplements while not on any tx
            Started Harvoni 12 week tx in early January 2015 v/l 18 MILLION!!! 4 weeks check up DROPPED to 15< points still positive 4 week check up UND last 4 week check up EOT……Final results SVR!!!!!

      2. I really like your philosophy of “spreading love”. I have been on other sites and not necessarily about our conditions. I have read negative comments and find them so offending towards others and admire any strength shown in not letting them get a person down! I had it happen to me outside a health site and was so insulted and wept for days. I am not as strong as most, I guess. Life is so precious and way to short for any cruel or mean statements. Keep the Love Alive as you have! Louise <3

        1. Dear Louise so happy to see you!! I have not been on here for quite a while. I had back surgery Aug 31, was just recovering when my husband was hospitalized. It has been very hard. I am trying to be positive, have not been on in quite a while. I saw you and you just made my day!
          Thanks so much!!

  2. Thank you Karen! I have just found out that my husband of 20 years has HepC. I also have been trying to find out everything I can about the virus, the treatment, ifit will have pased on to me or our 11 year old son!

    1. Please please rest assured that it is NOT passed on through the family. The only way it can be passed is in the blood.
      For more information, please read my post on transmission. You can type in a search for it in the box.
      I hope you can find all the answers to your questions here or on one of my links.
      Email me privately if you need anything.
      Your husband can get the help he needs. Bless your heart for learning and helping your family. xoxo Karen:)

  3. My daughter, who is a recovering heroin addict, just found out today that she has Hep C. She has to call the doctor back on Monday. He didn’t ask her to call him, he left a voice mail on her phone. I thought that was a weird way to let someone know they have Hep C. I am hoping — though I never ever wished this on her — that this will be her rock bottom. She has been in rehab 3 times and two weeks ago was found having seizures on the street and rushed to the hospital.

    My questions:

    1. Ethically was the doctor right to leave that message on her phone. I would think he would have said that he had test results abd to call him back.

    2. What are my risks of Hep C? Should I be tested? I have never shared anything with her. (I don’t think). I don’t do drugs.

    I guess I am just wondering here. I am worried for her, but there is nothing she can do until Monday. I found out from a message from her on Facebook that she wrote. I have MS and just turned on the computer.

    Thanks for the info. Her brother is also worried that he might have contracted it from her. But he called the CDC and they told him not to worry.

    1. You got hit with some hard news today. I’m so sorry. I’m a mother and can’t imagine the pain you must have gone through, only to be hit with news like this.

      Let’s believe together as moms that she will realize her true value in life. It sounds like your daughter was making some good choices. I’m in agreement with you and hope that this will be her turning point.

      To answer your questions:
      1. I wish the doctor had requested an appointment and told her in person. Is she able to find another doctor that may be more sympathetic?
      2. I have a blog on the exact numbers. The short version is that the risk of transmission is very low. It has to be a blood borne contact. I can only say that myself and many others have lived with family members who never contracted the virus. I shared a razor with my daughter and husband for many years. I did ask them both to be tested. Twice. They were negative both times.

      She is probably feeling pretty low right now. If she has been using drugs, you two have surely had some rough places in your relationship. Give her some time to let it sink in and let her know you are there for her. I will say that if she is able to treat, the chances of clearing the virus are good.

      Her rehab counselor may be a good source of advice. There are many good web links on the sidebar here at my site. There are also facebook pages. Many of these have a lot of caregivers who do not have Hepatitis C, but are friends and loved ones looking for encouragement.

      I hope you’ll consider me as a best friend in your journey. You didn’t find this site by accident. I’ll hold you and your family in my heart. Go to my contact me page and please stay in touch. xoxo Karen:)

      1. Thank you so much for your thoughtful reply, Karen. My daughter is 25 years old. I told her to call the doctor on Monday right away as soon as the office opens so she can get started on treatment. She is on my insurance, but that will end on October 8 when she turns 26. She has to find some way to pay for her treatment. She had been told while she was in rehab through something called an E chart — a message on there — that her liver tests came back high. (so she didn’t find out till 2 months later as they didn’t have Internet in rehab and her doctor knew she was entering rehab). So this really stinks. If I had found out before, I would have insisted she call the doctor right away, but she sent me a message on Facebook and I didn’t get it till after the offices were closed.

        1. You sound like a level headed woman with a plan. I’m sure your daughter must have some of that strength. She also has youth on her side. The liver tests will be high because of inflammation. It does not necessarily indicate damage. I have links under clinical trials. Major cities also offer free clinics. Private insurance has it’s benefits, but I have seen people approach this from a variety of ways and get the treatment needed. So much to think about.

          If you are active on facebook, there are some great groups who are knowledgeable regarding all of the treatment options in various parts of the country. hcvadvocate is a good resource. So much reading.That dreaded learning curve.

          A mother’s love knows no bounds. I have so much faith in you and your families future.

          I’m heading to a forest retreat this morning and will be sending love your way. Thanks for keeping me posted.
          love and hugs, Karen

  4. my fiance found out recently he had it…not sure if its still active. worse part…he was treated by a liver dr and wasn’t told from his main dr that he had it. I got so worried because i know that there can be a chance it can be transferred sexually but its a slim chance. I got blookwork done today and I am trying to remain calm. you say it can only be passed through the blood? I heard other wise…..help

    1. Hi Paulette –
      Congratulations on your engagement!

      Right after diagnosis a million fears go through your mind. I hope you get a chance to read my blog on sex and one on dating. Go to the “start here” on the right side of your screen and they are easy to find.
      In a nutshell, HCV is NOT transferred easily through sex. Less than 1% if I remember right. With the new drugs to treat, he can be free of it and you can move on toward your future. There will be some rough spots getting through, but he’s lucky to have someone who tries to remain a calming presence.
      All my best to you both! Please let me know if you need anything.
      xoxo Karen:)

  5. Hi Karen….
    I was diagnosed almost three years ago with hpv. I was living on the streets before then and shared a needle with someone who said they had hep c, and I still took the needle full of herion anyway (because I was so progressed in my drug addiction ) and put it in my viens. I still kick myself for knowing he had it and not caring at the time. Thats so unbelivable I did that. But now I am past that.
    I was told three years ago, that I would have to remain sober for at least six months before I started treatments. for 2 1/2 years I struggled with relapses and not on Jan. 22nd I have finally made it to the six month mark. (I am doing well and in outpatient treatment 🙂
    Now, on feb 4th, 2014, I will be finally starting the treatments. I worry about whether I am going to be able to handle it and be strong enough to get thru it. I know that I cannot do this alone. I have been praying to god to send all the angels he can, well send jesus himself pls! lol And I am living with my aunt who is an adult foster care, and she has been helping me throught the flu like symptoms that I am already having.
    I am now just accepting that this is going to happen, and this is the first time I have looked up any info on it…seriously! And I just have a couple weeks til then!! I am so scared karen. Is there anything that you could do to help me with the fear and anxiety? You have already helped me enough by finding this website, so I thank you for that. I can tell your a special person with faith by reading all your posts, so bless you,

    1. Jennifer,

      Congratulations on making it to the 6 month mark! Your start day is coming up soon! You make me cry this morning. Tears of joy that you have come so far. What a strong woman you are! You know, we all have areas where we just get into denial. We can’t handle the truth all at once. You have slowly peeled back the layers and gotten to the core of what is happening to you physically, mentally, and emotionally. It can be so overwhelming!
      As far as fear and anxiety, maybe your doctor can offer a med to see you through this tough time. Treatment is not easy. But girl – you are going to be AMAZED at your own inner strength. Keep reading. You are smart to jump into the learning mode. I wrote my blog from the most light hearted place that I could. I hate scary stories. They circle in my mind and weigh me down.
      One day at a time. That is all that you can do. Learn to quiet your mind by repeating peaceful phrases. Read the “I Am” blog. It works..
      Will you keep me posted? Check me out on facebook too. There are several forums and tons of people in the same situation. I’m here for you. much love and prayers. Bless you hunnyo.
      xoxo Karen:)

  6. Hi Karen,

    My name is Greg. I am 31 years old. I have known about my Hepatitis C diagnosis since I was 17, the year I tried donating blood for the first time. I was excited at the thought of being one of the first in my class to have such opportunity (being born in January). But later I would receive a letter in the mail from the American Red Cross stating never to try donating blood again. I was shocked, and yet I did not know anything about Hep C.

    I have always tried to maintain an active lifestyle. I rowed crew in high school, completed three marathons and one 1/2 marathon. I likely acquired Hepatitis C through a craniofacial surgery I had as a child in 1983. My family and I believe a blood transfusion occurred with infected blood. Or I could have acquired the disease when I was 16, when I had a second surgery done in 1999, but I’m almost positive no transfusions took place.

    It wasn’t until around November 2012 that I started feeling lethargic and susceptible to allergies to certain food and substances. I remember one night going to a bar with friends and drinking a few sips of my then-favorite: Guinness, and having to put it down because I suddenly developed a dizzy feeling. I asked the bartender for water and I never picked up a beer or alcoholic beverage again. Well, if you count taking a sip of wine at Church then I’d have to say that was the only other time. But when I took that sip, later that evening and night, I had developed an irregular heartbeat and my pulse increased. I believe it was God telling me I don’t need have any alcohol ever again. I haven’t looked back. For a few months I also had an adverse reaction to chocolate, and I avoid caffeine at all possible. I would have similar reactions. My doctor later told me I could have an allergy to sulfites. I can now consume chocolate again (in moderation) but I avoid any other caffeine and wine/beer.

    I also notice I am sensitive to extreme temperatures. Being from New York, I had difficulty last summer with extreme heat. I now live in Minnesota and, like many people, am dealing with an extremely cold winter. Have you found yourself to have sensitivity to extreme temperatures?

    I have Hepatitis C genotype 2a, and a viral load of about 1 million (last I checked in August 2013). My doctor then told me he wasn’t too concerned about doing anything then and my CBC/liver test seemed fine. My AST and ALT were 49 and 103. My Albumin was 5.1, which I’ve been told is a good sign in itself.

    I refuse to take Interferon and Ribavarin; I’m more of a naturalist. I currently take Bovine Colostrum (supplements) Vitamins B-Complex w/C, Cal/Mag/Zinc/Vit D and Milk Thistle. In addition, I try to eat well. 6’1”, 180.

    Thanks for providing a platform for people like myself to share their story.

    God bless,


    1. Greg,

      What an amazing story you have. Almost 20 years now with HCV and your labs are amazing! Congratulations on making some wise choices and prolonging your liver health. I’m a believer in homeopathy and have used Bovine and pig extracts myself. I’m happy that it is working for you! It won’t kill the virus, as you can see by your viral load, but it just may help to protect your liver.

      A lot of those symptoms describe me exactly. I tried drinking a few glasses of wine and it always made me ill. Looking back, in my 30’s I was on a beta blocker and we thought the heart irregularities were from living in the mountains and drinking too much coffee and hot chocolate. That was also the first time I realized how sensitive I was to temperatures. I literally could not go swimming because my heart would begin to accelerate and I was frozen in the water. I’ve tried twice to live up North and always move back to Oklahoma to get warm.

      Being diagnosed at end stage meant that something had to happen fast. My liver was failing. The new treatment did the trick for me. It was hell. But I’m alive and would do it again. You have a great regime working for you. I heartily applaud your diligence! It is also great that you stay in contact with a doctor who can monitor the condition of your liver. And maybe keep an eye on those new drugs… 🙂

      I’m so happy that you shared your story here. It is truly inspirational and I know it will help other readers. You are a great example of how lifestyle and diet are beneficial to those with Hepatitis C. If you ever want to write it formally…. I’d love to post it. Thanks dear friend.
      xoxo Karen:)

  7. Hi Karen,
    I found August 2013 I had hep c genotype 2. Viral load is 853,000 and latest AST/ALV was 45/53. I have been waiting for the new drug Sovaldi to start treatment. Unfortunately I was just diagnosed with a form of breast cancer DCIS. I now have to undergo treatment for that before I can start the Sovaldi/Riboviron treatment. My liver biopsy showed stage 3 fibrosis. I am so nervous to wait even longer now but the cancer must come first and I can not be treated simultaneously for hep c. I have had no alcohol since diagnosis.
    Is there anything else you can recommend I do to prevent further progression while I address the breast cancer ?
    Many thanks,

    1. Martha,

      Sometimes I like to read a comment and then think about it. Your story is amazing. You are also a very rare case. Thankfully your lab work for liver and viral load look good. In other words, the virus is active, but not raging full blown in the millions. That said, of course you want to be rid of it as soon as possible!

      I hope your cancer specialist is able to communicate with your hepatologist or gastrointerologist. I have to wonder if you are having surgery and treatment such as chemo or radiation. Girl, you have got a lot going on. My heart and prayers are with you.

      As for your question, I’ve thought a lot and actually started a couple of blogs regarding nutrition. That is going to be the only thing you really have control over right now. By avoiding supplements and foods that are not liver safe, you will protect it. You will need all the nurtition you can get to finish your cancer treatment. Please be sure that you get a good amount of protein through a shake. You are going to need your stength sweetie.

      I could say so much more. My heart is really full for you. If anything I have said on the blog encourages you or helps you through this, I am so grateful. Thank you for stopping by and taking the time to share your story.
      Will you do me a favor and PLEASE check back in? Let me know if you need more support?
      xoxoxoxo Karen:)

      1. Hi Karen,
        I will have radiation but no chemo. What are some liver safe foods you mention? And no supplements? Like milk thistle etc?

        1. Martha,

          I’ve written about Safe Vitamins and Supplements and also about daily sample of diet. It is really strict at first. You will have a little more wiggle room once you get rid of the cancer and virus. That’s why I call it being a nutritional ninja. Discipline is key.

          Go to the “Start Here” with the checkered flag icon on the home page. There’s a list and you can look up milk thistle, food, and supplements. I’m not a dr, but this is safe advice and saved my life.

          You can do this. I’m smiling at your determination. YOU are in it to win it, right? I’m here for you. xoxo Karen:)

  8. I don’t know where your info comes from but you are not right about Micky Mantle. He drank 1 liver to death, received a transplant and drank THAT one away too. Pam Anderson was an advocate for the Liver Foundation for a little while about 12 yrs ago. Naomi always said “her God & fans” saved her and never admitted to going through 3 treatment regimes. Evel almost died because he actually passed on a liver to give it to a young man stating that he himself had lived a full life. He wanted the young father to have the chance to raise his family. Evel did get the next available liver.

    Milk thistle has been tested and shown to falsely mask true LFT’s so its not the smartest thing to advice people to take it.

    Treatment still isn’t the answer for everyone and until people start showing up TOTALLY UNDETECTED after at least 5 years post treatment the “cure” word should be used very carefully.

    Science has NEVER been able to cure a virus to date and until they can prove they have why get people’s hopes up?

    Sorry but I have a real problem when misinformation is plastered all over the web.

    1. Leighann,

      You are so right! There IS a lot of misinformation out there. I would never want to be included as one who promotes something as a definite 100% truth if it’s not. I hope that you will read my blogs knowing that it is based on what I know and am able to research and what my doctors tell me. If it is a borderline topic, I state it up front and present both sides as clearly as possible.

      My whole state are big Micky Mantle fans and upon learning I had Hep C, I was told by my baseball loving friends that he had the virus. I’m publishing this so that anyone who reads it can do their own research if they want to. Maybe I should make a call and find out. His family all still lives here and his great nephew plays high school baseball nearby. If I’m wrong, I’ll retract it for sure. Thanks for the heads up!

      I knew Pam had done some public work and hear she refused treatment. I did NOT know that Naomi had treated…. You know, I watched a program about Evel before he died. It’s funny how HCV does not really register in our minds until WE get the news ourselves.

      When I was diagnosed and began searching for answers, I wanted the facts. Some of those facts were debatable based on who wrote them and what date it was written. My motive in blogging is not to be an expert, but a best friend sharing her experience. I will always be the first to point people to the experts.

      I appreciate you dropping by and commenting! I actually looked up Micky Mantle’s death cert and it says nothing about hcv. I wonder if mine will?

      Thanks again from your sometimes inaccurate, but always honest friend,
      xoxo Karen:)

      1. Karen,

        This is where my problem is. “I was told by my baseball loving friends that he had the virus.” First and foremost it doesn’t really matter a whit if he or anyone else famous had/has HepC. Pam never treated, Naomi never admitted to treating, it just doesn’t matter.

        I remember in 1998 when I was first researching RELIABLE information and writing my own webpage, being told to ONLY post information that was true, honest and would be helpful to newcomers. I was a newcomer myself and had to pick through loads of websites that got info from “friends of friends”. Most all of it was wrong. I can’t tell you know many hours I wasted looking at misinformation and junk that was (and sometimes still is) posted online.

        From that time on, I’ve always been a stickler about substantiated facts only. Why perpetuate errors? It doesn’t help people who are looking for answers. People who are new to HCV are afraid enough, why make it worse by incorrect information?

        Newcomers to this virus are looking for answers that they can expect to be reliable. Many don’t know where to look online. Instead of being one of the places they get false info, be one of those places they get the FACTS. Or send them to the websites for National Institutes of Health, Mayo Clinic, American Liver Foundation.

        My first stop was Hepatitis Foundation International and I’ve never regretted that first stop. I learned to become my own medical advocate. I became a patient advocate as well. Most people don’t realize they CAN and SHOULD question their doctors about treatments. THEN research the treatments the doctors recommend. AND research their doctors! Many so called Liver Specialists are really Internists, or Infectious disease Drs who don’t know what to do with HCV patients even now.

        My second stop was a support group, run by and for other Hepatitis C patients. You can garner an awful lot of good information and support there.

        Many people don’t even NEED treatment, yet doctors are STILL pushing it onto their patients because they either don’t know what else to do or (and YES this happens alot) they get kickbacks from the drug companies. Keep in mind that nearly ALL treatment studies are run by the drug companies. They have a HUGE financial stake in getting their drugs approved. They tend to use the easiest to treat. While many treatments DO lower a viral load count, the Genotype is the thing to watch. Viral loads change as fast as regular LFT’s do. Genotype 1a & 1b are the MOST DIFFICULT to treat. Seldom, even today, do people with this genoytpe become undetected or stay that way.

        As for the “cure” word. I’l believe THAT when ALL genotypes come back 5 yrs down the road with UNDETECTED viral loads. It’s also known that just because it’s “undetected” in the blood, HCV can hid in many other places that aren’t checked. No test goes to a ZERO level.

        Yes, I’m a Genotype 1b. Yes I have done treatment – 4 times in 4 years. Nope, I never once became undetected, BUT I am a firm believer that I held off moving into Cirrhosis by treating. It’s been 10 yrs since I have done any form of treatment, and will never do Interferon again, and yes now I am in Cirrhosis. I also know that I would have needed a transplant 10 yrs ago had I not done treatment. Interferon and even the new stuff will not reverse cirrhosis as it is permanent scarring. But if it slows down the progression of liver damage, then I’m all for it! If someone is only in Stage 2 fibrosis, shown on a liver biopsy, I’d then wait for better results depending on Genotype. Not everyone needs or should do treatment.

        I don’t believe in using alternatives because they have NOT been proven to be affective and some can cause more harm to a liver than drinking. This is my opinion but why put something in your body that you think will help, only to find out it caused more damage than the HepC did?

        As for the Mick’s death cert…you won’t find HepC on too many of those if there was another cause, such as his liver cancer. The only way your’s will say HCV is if your family pushes them to put it on there. And then only IF it was a mitigating factor in your death. (which should be a very long time from now and won’t matter a whit to you by then anyway!)


        1. Hi LeighAnn, I am sorry you have had such a hard time. There is now a cure that doesn’t include interferon. There is Harvoni approved the end of last year and a drug by Abbievie, Viekera, approved in January. Karen created this blog to help everyone, from being diagnosed with HCV to curing it, to liver cancer and treatment, to now a transplant. She helps with diet, side effects. Anything you can think of is here. There are many many pages. You could start under “Best Friends Start Here” She has a wealth of information, She wanted to help everyone on the spectrum instead of having to go to one place for a liver friendly diet, to HCV, another for Cancer, another for transplant. She is a very good writer and people are so appreciative that there is a place to come for information. Karen has done a lot of research to create this blog. She has helped so many people. Her IhelpC is all over, on Facebook and also on Twitter. She works and writes for a RN. She also works with other Hepatitis C Advocates, giving her time freely, in an attempt to help people and put the information in to words that everyone can understand. I hope you can find a good hepatologist and get treated. I wish you all the best in the future. I know how hard the interferon was I had to do it twice before I was cured. The word cured has been used for the last 3 years.
          I think, if you look around you will find that many many people are now cured of HCV. Research and Development has changed quite a bit since you last treated. Karen and I have been cured of Geno Type 1 for over 3 years. My best to you, good luck, Dee

          1. I also have been CURED of HepC with treatment. I did have to do the one with Interferon, Riboviron and Incivic. I also had Geno Type 1B. My hepatologist insists it is a cure as my load is undectable. Once you have had it is like TB and you will always “pop” positive. The Micky Mantle story is TRUE and even UNOS has a standard that uses his name as a guideline to prevent wasting a viable liver. I used Milk Thistle for 20 years prior to CANCER diagnosis and had one world reknown hepatologist tell me that it may have been a contributing factor to causing the cancer!! It is a prescription drug in Germany as I was told by another. It infuriates my present specialist that people refuse to believe in a CURE. If I , in fact, get cancer again it WILL NOT be from that cause of the cocktail I used to eradicate the virus. Herpes is a virus too and so is the flu so will you always have them??? There are many other examples. Interferon does not work for some and almost killed me twice but with a healthy liver I was able to withstand the treatment long enough to win the battle…I slayed the dragon as I like to say! This is fact and it is true. There are no guarantees in Life in anything but I would not trade my old liver and some over the counter drugs and luck and forgo the Miracle of modern medicine and gift of Life I was given for that risk or fear of surgery. I had to WAIT for a transplant. You do have to make lifestyle changes that many are NOT willing to do…every case is different but really the same as the rules are the same and you have to play by them. No exceptions!!

            Don’t be an ostrich with your head in the sand…get to the right doctor and get treated. You may have just organically buried yourself by waiting! I wish you luck, but get the facts straight so as not to dissuade or feed the fear of others from trying! Thank you all and above all, my donor.

          2. Dear Louise, I am so happy to hear that you have been cured of HCV. I also used Incivek and am cured. I am glad you were able to get a transplant. That is wonderful! I appreciate you sharing that milk thistle may be dangerous. I don’t take it but I know of others that do.
            Thank you again for writing. I really appreciate. I have made many lifestyle change, no fried food, no red meat, no processed foods, lots of
            water. Thank you for sharing, I really appreciate, Dee

          3. Hi Dee, yes we are VERY strong and lucky people to be here to enjoy Life. As I mentioned, I am posting things that I have been told be professional, very well educated physicians and my personal experience. I only want to help people. Some don’t want it and that is their right and decision. I have met MANY people on my 4 year journey, almost 5, yikes time does fly. Everyone has a different path and some different results. You just have to try until you get it right, eh?

            I also have given up some of my favorite food, like medium rare prime rib, oww! I have to watch potassium which is in ALL my favorite foods…fruits and vegetables. It is just amount and trades and some don’t do things. Like with drinking and smoking or drugs. Some people are weird about inviting me to parties as I do not drink, which I find sad, but ultimately it is their loss as I am still fun and maybe more so!!

            The Milk Thistle is a big one as it is promoted widely but may be harmful. I won’t do anything that I think might make me go backwards…my body can do that without my help and has…ha-ha (now)…not at the time! Take care and I do want the best for all.


          4. Louise, it is so nice to hear from you. Thank you so much for sharing your story. Yes, after going through 2 treatments for HCV I found that I was stronger than I ever thought possible. Like you I try to help others. I pay it forward so to speak. There is a really great web site called MedHelp and they have forums on any medical problem you can think of. I am often on the HCV, or HCV Social or even a Cirrhosis forum. The people there are all very knowledgeable and caring. I really appreciate you telling me about the milk thistle. It is funny. Years and years ago I used to take it, maybe 2009? Then…for some reason I stopped taking it. I don’t know why I just didn’t feel like it was doing much for me. Like you I don’t want anything to send me backwards. I want to move forward. I was not diagnosed with HCV for 30 years, was about to go in to cirrhosis. There were wisps of collagen that the pathologist thought indicated I was possibly transitioning to cirrhosis. I have now been UND/cured for 4 years. It took me two just to recover from the treatment. The Incivek added to the Interferon and Riba really changed the game. The first treatment was in 2008, second in 2011.
            Thank you so much for sharing. I think it really helps people to share their story. I am honored that you chose to share yours here. Bless you. Dee

          5. Yes, one thing I have learned for sure it to NEVER take away anyone’s HOPE!! It is a cruel thing to do and not called for ever! I have had a questionable area of Stage 3 scarring show on a biopsy so they say it it Stage 2 from the return of HepC, prior to second treatment. I was told you can have Stage 1 just from the trauma to organ or time it sits in the solution prior to surgery and during surgery. Even Stage 3 will reverse itself in time, a long time. I was asked to be in a clinical trial for a drug that is on the “cutting edge” to expedite the process. I declined, at the time, as I was still recovering from treatment and felt my body was fighting hard enough and there was no guarantee it would NOT cause cancer, hence, a trial. It was for Stage 2 or 3 fibrosis. So even now there may be a new drug to “repair” that!! Always hope and I have been told that even with Stage 3 people live long, normal lives!!! Many people do not realize they are there as people normally DO NOT have a biopsy of liver, right? So if I can ever be of help or my knowledge, not from a book but experience and meeting people…doctors and patients, I am just a note or call away! HAPPY THANKSGIVING to all…we all have so much to be thankful for, especially good health! Help those you may not be as fortunate, you never know that you may be saving a Life just with your comfort!! Louise

          6. Dear Louise, thank you so very much for writing in. You are so right, I still have hope that I will continue to get better every day. I was cured 4 years ago and while I do have level 3 in scarring and fibrosis, other things have improved. I have faith and I have hope.
            At one point years ago I was asked to be in a trial to see if they could reduce the scarring and fibrosis. Like you I was too close to treatment to even think about it. Well I did think, I even go the paperwork. I declined. Later I found out they cancelled the trial.
            I hope you have a nice Thanksgiving as well.
            We are having a quiet one just my husband and I with the hope that our son will come over for football
            Take Care

          7. Hi Dee,

            That is interesting to know that they canceled the trial. Now I can stop worrying if I did the right thing or not…WHEW!! I so want to live for a while and it thought maybe I wasn’t trying enough for a while…but I truly was worn out when asked. I too have the paperwork, still!! I hope your Thanksgiving is wonderful and know it will be!! Ours will be just us and quiet to but we have SO MUCH to be be thankful for and a friend in you too! Thank you for the note and update! Louise

          8. Dear Louise, I was like you, I wondered if I should have tried the trial but then I still had the HCV so decided against it. I heard several months later they stopped the trial as it made people sick. I have heard that Vitamin E is being tested to see if it would help with the scarring and fibrosis. The problem with that is that it is a blood thinner. So…with low platelets I think I will just keep eating well, which is hard to do right now ha-ha. Keep drinking water, do the best I can for my liver in the hope that the healthy parts will get healthier. I hope you had a nice Thanksgiving. So sorry I am just responding, I just had to get a new computer, my son found me a used one. Gosh I would hate to lose access to you and my other friends, take Care, Dee

          9. Hi Dee,

            Glad you got a new computer! Mine is 5 and starting to make noises and “freeze” so I will not be surprised when it stops running…just hoping it waits a while for finances and holidays to be over…ha-ha!

            Yes, I am in a “food coma” still from Thursday! Really not easy to stay on low potassium diet right now!

            I was cured when they asked me to do the trial but when the paperwork said it could NOT guarantee it would not cause cancer to reoccur, I had to decline. Like I wrote and have been told, even at stage 3 fibrosis your liver can get better it just takes a LONG time. If they come up with a FDA drug that speeds it up I will try but not as a “guinea pig”…I have done that enough for now and still need to get all my energy back…comes and goes.

            I have heard not to take Vitamin E for a variety of reasons. Low platelets might be one. Mine are going up and almost normal but it has been almost 4 years so this too takes time and changes all the time. I know Prograf lowers them along with the WBC but they are in normal range so am grateful.

            I have had the same e-mail since 1998 so I will be here as long as I am here…tee-hee…hopefully for a while in case you don’t have it for a while.

            Take care and keep in touch.


          10. Here there Louise! I am so happy to hear from you! Yes, our laptop is about 9 maybe 10 years old. We bought it when my son was in college. He was so angry with me for not checking with him first. He is a computer expert and he keeps our computer running. I got it because QVC was having a 6 easy pay day LOL
            Mine works weird, some days it types so slow I have written a paragraph before it catches up with the first sentence. Some days it freezes up. Today it is working great but my son was here for two days so he probably cleaned it up a bit 🙂

            I was showing my son laptops and he realized if he did not get it then he would come over one day and I would have gone the way of Easy Pay again LOL. He and his Dad gave it to me for an early Christmas present. They know I like to save presents to open on Chrismtas as we normally don’t have much
            Food Coma?! Oh I ate so many carbs, I did not even check my sugar. Of course I love the stuffing with a little bit of turkey, then sweet potatoes with marshmallows and pecans. My husband likes them with pineapple in it so I made two batches. I ate almost all of mine then went and got his for breakfast the next morning 🙂

            I am happy to hear your platelets are up. Mine are too! They are higher than they have been since 2003. When I was diagnosed that was the reason, my platelets were only 67. The blood specialist said he would have liked to have seen them when I was taking a lot of Advil due to a torn tendon. Right before my surgery in August this year I had stopped the Advil and my platelets were 185! My liver specialist was thrilled. My liver enzymes are in the teens, first time since 1995

            I am seeing my liver specialist the week of Christmas I hope he has good news for me. I am with you, I am not ever going to be a guinea pig again. I only mentioned the vitamin E because I saw a trial was being done. There is something that a researcher, on MedHelp, said would reduce the scarring and fibrosis but the name escapes me right now, it is like lecithin but not. I will ponder it, it will come back to me. I think it is PPC but can’t remember the name.

            I also have had the same email for 16 years. We bought my 14 year old a computer one year for Christmas, great rebates so it was cheap. At the store I had to pick a user name so I picked his name. Then I realized he would be in charge of parental controls so I took the id and gave him a new one. It is silly and I know I should change it but then I worry, like changing a phone number, that people from long ago might want to get in touch 🙂 Even my son is using his real name for professional reasons 🙂
            Thank you for writing, always nice to hear from you
            HUGS Dee

          11. Hi Dee,

            Just a note as I have some things to do today that I put off…easy to do and then becomes a bad habit.. 🙁 Bad me! Your numbers are fabulous. I have not had my platelets that high since right after transplant… then after 2 episodes of rejection they stayed around 50-60 and now I am thrilled at 110! Hoping to keep going. AST/ALT range from teens to low 20’s and that is ok by me and my hepatologist. I starve myself to stay in potassium range…Prograf just throw it off on some people and lucky me, I am one…ugh! Also had to have one adrenal gland removed with old liver as tumor removal scar had attached it to liver…that makes your body not process cortesol properly…again only sometimes but I have the double whammy so I try but do eat what I want sometimes…NEVER drink or smoke so do the best I can with exercise and diet…must live too, so food wins sometimes! Enjoy this joyous time. You are so fortunate to have a son. I don’t have any children and really wanted them but God decided different and I lost 2 early on. Some of my, now former, friends treat me differently as they are starting to have grandchildren…hurts, as that is one thing I can not change and it wasn’t by choice…like cancer…some people are still afraid of me due to that. Weird but hurts and I don’t understand…I love children and don’t understand why we can’t share their happiness…oh well, now I am getting melancholy… Louise 🙂

          12. Oh Louise, I am so sorry. I know what it feels like to want a grandchild. I would love one. My children don’t look like they are going to have any so I try to baby sit for my neighbors. It took a long time for them to consider me their friends. It started off slowly, an hour here or there. Then, before my surgery I had so much fun playing with them.
            Now I can’t do much with my back like it is, but I pray every day for it to improve so that I can get back into the swing of things. It is funny, people come and go where I live in a condo. I used to babysit for 3 little girls, so precious, they were 5,2 and 1. When they moved I knew I would not see them much and resigned myself to the fact. It has been 7 or 8 years since I have seen them. I miss them. I saw them about 2 years ago and one was just starting junior high, the other two were in elementary and they had added two brothers.
            I was amazed. I know it is hard. This is an especially hard time for all of us, the Holidays. I feel a little left out myself. A close family member is only 5 minutes away but for some reason doesn’t want to see me. she is visiting from far away for 10 days. She did the same in October for two weeks. Neither time did I see her. It breaks my heart. I thought we were close. We were when I helped her with her granddaughter for 2 years, or helped her pack up her things for 6 months for her big move 3K miles away. Now I realize there is only room for me if she needs something. I have texted, emailed, asked if I could stop by for a hug, all to no avail. I can understand the melancholy. I have been crying all week. I don’t think people understand that we aren’t asking for days, just a few minutes of kindness would mean the world to me. Silence is what I receive or when I ask if I can come over, I get an email saying the days are just flying by. I have given up hope, she is leaving tomorrow so today was the last chance. Sorry now I am crying. I wish you the very best. Keep in touch my friend, Dee

    2. Hello there! I wanted to let you know there are new medicines out there that are curing the HCV virus.
      I am over two years post treatment and have been declared cured.
      It is not like it was back in the 90’s. People are being cured now, some without interferon.

      Good luck to you

    3. Hello, you may want to conduct some new research on the treatments that are curing people of HCV. There have been many changes in the past 3 years. Perhaps you have seen commercials for Harvoni or Sovaldi. There is financial assistance out there as well.
      There is new hope for people. HCV is no longer a death sentence. Perhaps even Pam Anderson will treat. Many celebrities have hidden their HCV, much like Rock Hudson hid the fact that he had AIDs. Karen and I have been cured of HCV for over 3 years.
      Good luck to you
      Dee Ernst recently posted…Post Liver Transplant Protein and HealingMy Profile

    4. Excerpt from Micky Mantle’s obituary in the Washington Post

      After he retired, his celebrity status continued, and he drew large crowds to autograph shows and his baseball camps and appeared on TV talk shows and even music videos. But as a Yankees superstar, he had developed a taste for high living and good liquor that only accelerated after his playing days ended, and he eventually became a chronic alcoholic. He was treated for alcoholism, and his damaged liver eventually was ravaged by cirrhosis, hepatitis C and the cancer that led to his death.
      Dee Ernst recently posted…Post Liver Transplant Protein and HealingMy Profile

  9. I have hep c also had a transplant in 08 now I am to see the doc on April 18 to discuss
    the new drugs any body who thinks they a possible chance GET TESTED time is not
    On your side.

    1. Richard,

      It sounds like your transplant has gone well for you over the years. Now all you have to do is get rid of the virus! Woohoo! This is certainly the time for it. I am glad that you will be able to treat with the new drugs. So many with transplants have had great success. You’ve got a lot of hope for the future dear friend!

      I will echo your thoughts: GET TESTED now!

      Thanks so much for stopping by and commenting.
      xo Karen:)

  10. I have hep c genotype 3 . To make a long story short i made bad decisions and was diagnosed in 2010 but i know i caught it in 2009. i am at stage 2 with moderate fatty liver.i have never been too overweight but have gained over 100lbs even though i do not over eat. i do not qualify for interferon because i have fibromyalgia . my doctors always divert the attention only to my weight as if to say there’s no hope for me only to lose the weight first. Its impossible for me to exercise i get vertigo and recently the found a 4 cm size mass in my right lung..before the could biopsy it i myself took some left over antibiotics and the doctors said they where amazed because it completely disappeared . so now sence i get bronchitis and asthma and pnuemonia. i have so many health problems i feel hopeless . Any news you could give me to help i would appreciate it greatly .

    1. Cherie,

      Please do not ever give up hope! There is always a way to get going again. It seems like you are caught in a cycle of not being able to begin exercising. I hope you will look at my exercise blogs. (You can access them from the checkered flag “Best Friends Start Here” icon on the home page) As a matter of fact, I sat in my chair and did some yoga this morning. It helps to feel like you are doing something to help yourself! Plus you just flat out feel better. It can ease the pain of fibromyalgia too.

      About treatment, Abbvie is getting ready to release the new interferon free meds soon. There are so many drugs in the works right now. Many of them only take 12 to 24 weeks. Then you can be HCV free! You won’t believe how much better you will feel. By exercising and eating well, you can do so much to prepare your body for treatment. Stage 2 is not such a bad thing when you realize that you can halt the progression of the damage.

      I loved reading about your mass disappearing. Miracles do happen. That is what we have to believe. I want to encourage you. Think about that word courage.. it means I am adding my courage to yours and cheering you on as you tackle on problem at a time. I hope that you will continue to read and gain hope from all of the success stories that others share.

      You can do this! Thank you so much for dropping by and commenting. I will hold you in my heart.
      xoxo Karen:)

    2. Cherie,

      My computer died and I got so behind on comments. Will you forgive me?
      I have responded on an email to your personal comment. Dear one, you have been through a lot. I am hoping that the new drugs will encourage your doctors to reconsider. I know many people with weight issues who have treated. That’s not fair for them to point at that.
      The lung issue is clearly a miracle! I’m so happy that that is NOT going to hold you back. There are stories of those who have been through treatment with fibromyalgia also.

      http://www.ohmyachesandpains is a website ran by Selena and she can probably offer you a lot of comfort and advice. Fibromyalgia is a hard thing to live with and has to be looked at WHILE you are dealing with treatment issues. Let me know if you need any other resources. I would be glad to help.

      Thanks so much and best of luck and love to you dear one. Hopeless? No, girl. Press on and you CAN get your life back.
      xo Karen:)

  11. Dear Karen your blog is very helpful at a time when there is not a lot of help, support or information about HCV
    So many people still think the only way you can get HCV is by IV drug use or a blood transfusion.
    I wish there was more knowledge, less ignorance.
    I am cured of HCV, have been cured for over 2 years. They do call it a cure now, it does not come back.
    Sharing your information is so important. To let people know that 75% of the people who have it do not know they have it.

    This is a lot like cancer, people did not talk about it at all. Then on to HIV and AIDS. Now, more people die from HCV than AIDS and people still do not understand how it is transmitted.
    Great job!
    Your friend

    1. Hay Girl!

      I hope you’re having a great summer! The blog has been a blast. I really did not know what I was doing at first. Just reaching out through cyber space. We had no clue when we started the first FDA approved drugs. I didn’t want people to sit alone in the dark wondering what was next, you know?
      I’ve met so many wonderful people at different stages of Hepatitis C. They come from many different backgrounds. You’re right, most people have no clue about Hepatitis C. I’m happy to be part of creating awareness through the blog and by being an advocate for those who are still waiting to treat. Also those who are like you and me learning to live with the effects of liver disease.
      The new diagnosis with liver cancer is a lot like the early days of learning I had Hepatitis C. Another learning curve. LOL. I can survive this too, right?
      Much love sister friend,
      xo Karen:)

    1. I think it’s all cleared up now. My computer was down. Actually, I had to go get a new one after my hard drive crashed. I hope you were able to get all the information that you need! If you have any more questions or comments, please feel free to drop by! I’m not working this fall and have a lot more time to devote to writing and working on the website!
      xo Karen:)

  12. Karen Hoyt
    I am 46 years old and I have chronic viral hep c genotype 1.I am in bad shape.I’ve been fighting my disability for almost 3 years.I have no insurance.I need treatments right away.can you help me .do you know someone that could .please email me privately or call me at any help would be greatly appreciated.

    1. Hay Pam,

      The best place I know of to look for treatments are through hcvadvocate. Alan Franciscus has a great website and it is the oldest one out there for Hepatitis C. He can point you in the right direction.

      Another thing is to look me up on Facebook. ihelpckaren. I have a ton of friends in forums who will welcome you and shine the light on your path. Stay in touch and let me know if you don’t find what you need that way. Where there is a will, there is a way! You can do this!
      xo Karen:)

  13. I just read all the posts in this thread on HepC. I am a liver recipient (3.4 yrs) and would like to share what I was told by world renowned specialists at Scripps in CA. Scripps has always been on the cutting edge of breakthroughs for disease.

    I was told to stay away from Milk Thistle as it could actually worsen liver disease. Another doctor had mentioned using it prior to my cancer diagnosis from HepC and said it was a prescription drug in Germany. So I guess there are mixed reviews on that one…the jury might still be out. Personally, I do not take it anymore and had for 20 years…it, obviously did not prevent cancer. I also had been taking Goji juice and both the sales rep and myself got cancer. She passed away and was the picture of health.

    I did the treatment for the cure after transplant as I had such a difficult with first try 10 years prior and failure, it was just too dangerous to try again and was told to wait for new meds. They came on the market shortly after my transplant. The transplant “woke up” the virus and it came back with a vengeance as was expected…95% of people who have it without treatment, will have it come back after transplant in new liver. That it why it is ideal to do the treatment prior to transplant. Now that is easy even with the hardest genotype 1B, which is what I had. They do call it a “cure” and are adamant about that. My primary doctor told me it would come back and when I told my hepatologist she was furious and said that was not sound medical information. I have been clear for almost 2 years and all my numbers prove that not having HepC is the ticket to complete recovery, along with very numerous and sophisticated tests, MRI, nuclear meds, CT’s etc. And, of course, diet and exercise are key for recovery.

    I can not speak for the decisions of the rich and famous, but their stories do influence the public and they have a responsibility to watch what they say. It is life and death that is involved. Being a “hero” of sorts does not make you a medical professional and who knows what their blood work really says. I am glad that some are honest and not stupid or selfish, in order to sell their own line of health products.

    I am glad that certain high profile people respect and appreciate what has happened to them both physically and personally. I wish “all” the best of luck.

    On a closing note, I was told that part of the formation of UNOS was due to what is referred to as “the Mickey Mantle situation”…he received two livers, never stopped drinking and the results speak the truth, the waste in doing that. It was partly, if not entirely, created to prevent only the “high profile” people to be deemed worthy of transplant and let serious people, like ourselves receive the precious gift of Life!

    Have safe journeys and my prayers and best wishes go out to you all. Everyone does travel a different road and remember that…mine was long and winding, but here I am!

    1. Hello there! Thank you so much for sharing your very brave journey. I know it must have been hard to do the treatment again after having failed. I know that it was hard for me. I treated for 48 weeks, relapsed, had to wait 2 years for the next medication to be approved. It was a rough treatment and it took me a very long time to improve. I hope that you are also feeling well.
      I think, with all of the stigma attached to HCV that we need someone to show others that anyone can get it. Much like Rock Hudson with AIDS and Elizabeth Taylor starting to help raise funding and spread awareness. It would really help. 75% of people with HCV don’t know they have it. You are so right, we are now being cured, impossible not too many years ago. Even now people think it might come back. I know it won’t, my doctor also calls it a cure. What treatment did you do? If you did interferon and ribavirin it can take up to 6 months before the ribavirin completely leaves your system. I was very tired for a long time afterwards. You are right, diet and exercise are very important. Once I started walking again, I felt much better. It was hard to get started but once I did, I could feel the different. Part of that was also that my thyroid was affected by the interferon for a short while.
      I am really so happy to hear that you were able to kill the virus. I hope you will keep in touch, my best to you, Dee

      1. I am very happy that you took the time to read my story. I had many setbacks along the path so far, and will gladly share anything you have questions about and I have knowledge of. To answer your question of what treatments I did: Back in 2004 I tried just the Interferon and Ribavirin. One shot a week and ribavirin twice a day. I immediately had bad reaction with drops in all blood cell counts. I ended up injecting neulasta for white count twice a week and procit once a week for red blood cells. Platelets were very low but I was willing to continue on. After only 5 weeks platelets dropped to 6000 and I was told to stop all treatment IMMEDIATELY and as I mentioned before told not to try again until there was an alternative treatment. So many came close but then were found to cause blindness or worse and in 2010 I was diagnosed with cancer of the liver and needed a transplant (2012). So when I received my new “Gabriel” all my blood work seemed to come back to normal. My AST/AST were never above the 150 mark prior to surgery, even with cancer! Platelets were low though…they never returned after the first treatment to above 23-25,000, they were in a normal range prior. Post transplant they were at 140,000 and that was great for me. I did get an infection from a tooth that was broken during surgery and had to wait to repair. So my counts went to 1300 and 1100 for ALT/AST…record breaking for doctors! Now they are 18 and 31 so I am VERY grateful as my doctor saved me again. My platelets hover around 90,000 but now that the HepC is gone they seem to continue to go up. Everything takes time. When my counts were so high, post trantspant, my viral load also went to the moon at 16 million…prior to surgery it was 330,000. My second treatment was with Interferon, Ribavirin and Incevik. I was only able to tolerate that for 11 weeks as blood counts plummeted again but viral count was “undetectable” and has remained there for 2 years now. I am CURED. It is REALLY important to due the treatment at whatever stage you are in, during the progression.

        We will stay in touch and do feel free as I have said to contact me at any time with questions, fears, to say “Hi” , any old thing! I want to help and share and communication is also a key to recovery, I believe! We all need support and certainly are in a special group of people who have been given that chance to live again thanks to the greatest gift of all through donation of another! Here for all. Louise 🙂

        1. Hi there, thanks for much for writing back. WOW you have really gone through it Louise I am amazed at everything you had to do to get well.
          I remember Incivek, it was awful but it did work. You are the 4th person I have heard of who did 12 weeks
          or less and are cured. That is the best news. I almost wish they still made it here in the US but I
          understand better things have come along so that it is no longer needed. It took a lot out of me, took a
          long time to recover. How are you feeling?

          1. Hi again! Yes, many ruts along the way but am feeling really better now. Still get an off day but maybe it would happen anyway. It has been 2 years since I started treatment and hit the brick wall in August 2013 and was hospitalized again. It was a slow heal, but after about a year I started feeling much better and now actually feel like my new liver is working. Still have fatigue but I am also older so what came first, the chicken or the egg, eh? I try to maintain a walking routine and it really helps. I have been told that now I don’t have the disease my liver will repair certain damage that was done. I still get monitored every 3-6 months (MRI) depending on results. Also have a blood draw every 2 for Prograf and just for general overall well being.

            Yes, many better things have come along since the Incivek. My doctor says there is one they are using that is just two pills a day and targets the Genotype 1…the hardest one. There are very few side effects, although she laughs and tells me with my sensitivity to drugs I might find one…ha-ha! Thank goodness I won’t have to go there and find out! She also says it has a 90+% cure rate! Sometimes in 12 weeks but most people have to do 24 weeks.

            We just need to spread the word about treatments as I know there are people out there who ignore disease as it is not bothering them. I try to tell them, gently, that it doesn’t work like that and then just lead by example. I remember thinking this would NEVER happen to me. I always ate well and exercised and took care of myself.

            Happy for you and keep spreading the news! 🙂

          2. Hello! You are so right we need to spread the word as best we can. People think if they have no symptoms from HCV that they are fine. They don’t understand that the virus is slowly quietly destroying our liver and even other organs. It is called the shadow disease or the silent disease as people don’t know they have it until they get sick. I have seen people suffer with kidney disorders as a result of the their liver not working well. The people with HCV may be fine today but tomorrow they could be like Karen and suffer quite a bit. She was not aware she had it, went for a long walk on a hot day, the next morning she was so bloated she could not get her clothes or shoes on. She ended up in the hospital. It is awful to discover you have HCV and cirrhosis at the same time. I know how that feels as I found out within about a month that I had HCV, then cirrhosis. I do believe that once the HCV is no longer attacking our body, our liver can get better. My last ultrasound said there was no sign of cirrhosis where for 6 years before it always said there were signs.
            I go to the hepatologist every year now, used to be every 6 months to get blood work and a sonogram. It took over two years after finishing treatment that I was told that. So…I believe it can happen. Thanks so much for writing, it is so nice to “talk” to other people in a similar situation. I don’t know anyone personally who has HCV.
            Hope you have a great day. Dee

          3. Hi Dee,

            Your story is very interesting and it seems a lot of us follow a similar pattern prior to discovery of the disease. You are so right that is a silent killer until it is almost too late. I don’t feel so alone after your story in how long it is taking me to get to the once a year doctor visit. With my setbacks and having to wait to do the treatment until post transplant everything changes. Unfortunately, so do some of my tests. It is like two steps forward and then four backwards at the present. I graduate to the 6 month plan and then a “small” difference is discovered and I go back to 3 month until they are comfortable as to what is “was” or if it is still there.

            My energy is not that of yours or Karen’s. When I had my transplant the doctors had to remove on of my adrenal glands as where they “killed” the cancerous tumor scar tissue had formed that attached the old one to the gland. Bummer and unexpected but people can live with one adrenal gland and I am proof.

            It is interesting to know how fast it does strike otherwise normal functioning individuals, like you, myself and Karen. I do know two people who have the disease and are like ostrich with their heads in the sand. I guess it is denial and when I have tried to talk with them it causes friction so I don’t discuss it . I think I scare them. I do believe it is reality and we are not isolated cases in cause and effect. I know that with the treatment your liver can return to normal in most cases even without transplant. You just have to step up to the plate. I do have a friend that did not require transplant as he immediately started one of the old treatments when he discovered he had the disease. This was over 12 years ago and he is still working construction. No need for transplant and virus free. He thanks God every day. Where you able to avoid transplant also?

            I am so happy that you two have had such great strides in recovery and hope to follow up the rear. As we know, everyone has a slightly different story and all a different rate of recovery. You are so kind to write and I am happy when I see there is a note for me from you. Thank you so much.


          4. Louise,
            Hi! I’m logging on for a bit and was glad to see your post. I too have one adrenal gland and was happy to hear that my docs are lowering my steroids quickly. I need to blog about the fatigue that comes with that. You know that prednisone stimulates your adrenals right? Take care to regulate your activity, including mental activity! No stress!
            I’m finding out about the forward and back steps. I’m already doing the Prograf shuffle. haha.
            I think that DNA and genetics causes some of our livers to fail faster. Fortunately the treatment worked for me before transplant was required. My friend Linda just finished her treatment this year. She had a slower recovery from her transplant also since she still had HCV. Four years later she is doing great.. I think the virus being gone was a big help for me…xo
            Keep going strong! We’re in it to win it! xo Karen:)

          5. Dee,

            Thank you for you input again! Wow, you are the first person I have talked to that has only one adrenal gland and I also believe it slows your energy level. I have been taken off the prednisone and on just a small dosage of Prograf so I am grateful for that as steroids do come with numerous side effects, the only good one being the energy boost. In the long run it does not out weigh the others so I am glad to have made the “shuffle” as you so aptly called it to the Prograf. It does take time and requires more blood work but that slows down after a bit. No different than people who take Coumidin for heart or other conditions.

            Yes, you are so correct about stress. I have a bit of a “stress fest” that I try very hard to work with. My husband suffered a massive stroke and has permanent brain damage so he has lost his communication skills, math, etc…but he also is not a quitter and still bags groceries…his limitation mentally. He was retired from the Army after 23 years and was happily delivering the mail in our home town when he just got “hit” at the age of 53. No one said anything would be easy so we must work with the cards we are dealt. Thank goodness I was not sick at the time and worked with him for a year to bring back what we could. His mind was a blank slate and he did not know who I was for a month…we met in the 1st grade…we went separate ways but married when we were 32 and met again…small town so kind of always knew one another. Hope that is not the too much information or “TMI” flag I as I sometimes say!

            We are strong and we are the winners…just have too keep the boxing gloves on sometimes! It is encouraging to know that others have been there, done that and won!

            Always here some part of the day but do the walking, doctors, cooking, etc, like you!


          6. Dear Louise, thank you so much for sharing. I am so sorry to hear that your husband suffered a massive stroke. That had to be so hard. I am glad to hear that you were able to help him, 53 is so young. He really was your childhood sweetheart 🙂 I am happy that he is still with you. I see that Karen responded to your message too! When I first came on here I thought what? Then I realized that Karen must be feeling better to respond, I am happy that she felt up to it. It has been a little over 2 months since she had her liver transplant. I did not realize that steroids gave one energy. I always felt so lousy on them, I was happy when I could stop. I hope today is a nice Fathers Day for your husband. Talk to you soon, Dee

          7. Hi Louise, I am so sorry to hear that you had to have your adrenal glandremoved. I can’t imagine. I did not have to have a transplant, I have been lucky. The treatment was really a doozy and I feel it took over two years for me to improve. Talking to others I see that they took 18 months to three years to recover. I still have days where I have to take a nap but I can tell I am improving all the time. There are up and down days like everyone has and days where I do too much and pay for days. I know there is a happy medium, I just haven’t found it yet 🙂 My hair is still very thin with some bare spots. I wonder if it will ever completely fill in but I am trying to be thankful that I still have hair LOL. I try to tell myself that my body is working on more important things than my hair and nails.
            I know what you mean about denail. I know 4 people who have it and have decided they don’t feel sick so they are not going to do anything about it. I have tried to explain that if one waits until they are sick it might be too late to treat. Some people just don’t get it so we just have to let them travel that road by themselves. They will get there, they are just taking the long way around.
            I am happy to hear of your friend who treated 12 years ago and it still doing well. What really helps me is Karen’s positive encouragement. She always makes me feel better about myself. In fact, notes from you do that for me as well. I don’t feel so alone when I hear of others who are struggling to improve. It is like we are all in this together, cheering each other on. It is really nice to know that no matter where we are we have friend like each other. Lot of light, laughter and love coming your way, dear Louise.
            Sorry this is so short today. It is so hot here today I am being lazy. More soon 🙂 Dee

          8. Thank you for taking the time to write again. You are very fortunate to have avoided the transplant. My hair is also VERY thin and I also hope it will fill in some day. It was not really thick before but the treatment does not help. I was told it will and would keep the faith. So at almost two years I am not too far behind in getting better. I think the adrenal gland might be the culprit in some of the fatigue. Some of it is the treatment but will go away with time. With time I am told that so will most scarring, even at Stage 4 cirrhosis, sometimes. I did get some on my new liver but it is only Stage 2 and not close to cirrhosis and it can take years for the liver to regenerate and reverse the condition. This is what the doctors at Scripps say and I trust them as they are world renown.

            Yes, everyone must figure out what they want to do or not do with their health. Some people say they would rather die than not drink again. Personally, I never went there and the will to live would supersede any of the changes required.

            It is humid here today and has been for a couple days but I think it will break today as a breeze is stirring. I sure hope so as it does not make for good sleeping and I am not ready to turn the air conditioner on yet!

            Enjoy your weekend and take the time needed as you will be back to perfect in a matter of time. It just seems like forever!

            Louise 🙂

          9. Hi there! Great to hear from you, I am sorry I am so far behind. My A/C broke and I have been dealing with that. Of course it happened right after I had the yearly maintenance done on the furnace. So I have been taking out stuff from the furnace room, putting it back, taking it out. LOL. Then I threw my back out. I am discombobulated, don’t know if I am coming or going.
            I agree, I am sure your adrenal issues have contributed to your not getting back to your before treatment strenght. I had a problem with my thyroid about 6 months after treating, it added to the hair loss, lack of energy and took a long while to normalize. Boy we are almost like two peas in a pod 🙂 I hope that my story gives you hope. I wish I had had someone a head of me to look to for hope. There is hope and it does get better until one day you realize, WOW, I feel better or “that pain is gone” etc. Of course we all will still have bumps and bruises along the way and I think that we take longer to heal because of the treatment. When I first finished tx I tried a supplement called NADH, it really helped me quite a bit. Then I tried probiotics and they made a difference in how I felt. I shared with others who had treated and they felt the same way after about 3 weeks. I think every positive thing we can do will help us.
            I laughed when I read that you know people who would rather die than quit drinking. I know it is not funny but I think to myself….how odd that they would rather die? Here we are, fighting to live.
            I will write more soon my friend. Take Care

          10. Always a “pick-me-up” when I hear from you! Yes, our paths have crossed at many junctures! I have been battling a sinus infection from the humidity here. The humidity is gone now but will be coming up from Mexico in a few days again. Ugh, the dog days of summer at times!

            Interesting that you have the same situation also that I do in checking heater, termite inspection, and air…only access is above a closet that is too full and requires too much bending and lifting, but has to be done! The curses of an older home (1939) but they do not out weigh the blessings. They did know how to build custom back then and I do have many features that I like and are historic to our town. Tough to do alone though as I mentioned I have no children and am an only child. My husband’s two sisters want to remember him the way he was and have 3 sons between them right here that could be so much help but not around.

            Anyway I am getting on a down note and REALLY do not want to come across that way. Tomorrow is my Birthday and for some reason I am not excited this year. Too many stressful things in my life at this time and no one to share with so I just need to “buck up” and deal with it! Nothing new but I am tired and had to go to doctor yesterday who said I needed a break or I would get really sick. It was nice to be around someone who spoke so intelligently, gently and made sense…he got it just by looking at me.

            So all for now, need to rest and then have one appointment this afternoon and then plan to “hide” for few days…ha-ha! Thanks for bearing with and I am glad you take the time to write.

            One thought…I listened to a neighbor (55ish) who was so drunk (as usual) the other night and was so glad I never was like that and know what he is facing…karma though as he is mean and rude to me as I am alone basically and he is a bully. I simply asked for peace and a little quiet. Life has many twists and turns.

            I also have been taking probiotics for almost 2 years and YES they do work.

          11. Good Morning! Happy Birthday! I hope your day is good. Ugh sorry to hear about having to move things. I had to empty out our furnace room so that it could be inspected, got that done Monday, then stuff put back and yesterday had to empty out again for the guys to come take a look at it. The only positive is that they got here quickly, it was just a part in the heat pump. We were back on within hours. It took a while to cool down but at least yesterday was a nice day here in Virginia. Low humidity, in upper 80’s but it wasn’t too bad. Now back to heat. I have heard that Saturday will be cooler. Funny how ones perspective can change. Normally 80 would be hot but after the nearly 100 degree weather before that it was a great day. I know what you mean, we have a neighbor we rarely see unless he has been drinking. Nice guy when sober. Overbearing when drinking. I am happy to hear from you as well. Thanks for telling me how the probiotics have helped you. It is always nice to hear that it helps others.
            Wow a house from 1939. That has to be so nice. I am sure lots of upkeep but they made houses really well back then. Not like today.
            Today I am resting my back to try to help it heal a little from all the work I have done in the last couple of weeks. It makes me feel lazy but I know if I ignore the pain I will really pay.
            Again, have a great day, will check back in later 🙂

          12. Thank you for the birthday wishes!! Yes, kick back and let your body heal. It does tell you what to do if you listen! Thank goodness we are in the right zone to pay attention!


          13. Hey there Louise, I hope you are doing well. Sorry for the slow response, I have been on bed rest for last 4 days. My back is locked up. So sorry, I hope you had a nice Birthday, hope to hear from you soon 🙂

          14. Dee,

            My best wishes that your back is back! I have occasional arthritis issues but have a friend who suffers from chronic back pain and it at the point of considering surgery, but afraid of consequences in the event it is not successful.

            I had someone call me yesterday who said they had tested positive for the virus but when they went back, after extensive blood work and ultrasound, yesterday were told somehow their body had fought it on its’ own and their was no damage or signs of the virus in blood now, even though still test positive. I have heard of this miracle but really am not familiar with it. I guess it is like a false TB test…my husband tests positive and yet has never had it and that was 40 years ago! Gee, I kind of feel like my body drew the short straw as my case is soooo different. Oh well, God only knows.

            Keep on healing and I am trying to do the same. Have blood work in 12 days and then if all is well I have to go for MRI and CT three weeks later. Always worrisome as they did see a “flash” on liver on MRI last time (3 months) and so I’m retesting. Ugh.

            Enjoy this upcoming 4th of July! It is a HUGE event in our town!


          15. Hi there, I have edited your response a bit to protect your privacy and will get in touch. I think this is important, there are people who can fight off the virus. I am not a doctor but up to 25% of the people’s body can heal the Hep C virus. They will always test positive for the virus but they will have no viral load or geno type. It is like those of us who have had chicken pox, we have had it but don’t have it now. (Of course I have no idea how that relates to shingles LOL.) Those people are blessed. I was not one of the lucky ones either. I treated twice for HCV and the second time worked. The Incivek took the interferon and ribavirin to another level. Thanks for mentioning the doctor, I have to go for my yearly checkup, I am behind. I should have gone last month. Life sometimes gets in the way.
            I need blood work and the US. They check for cancer every year. It used to be every 6 months.
            Right now my back is locked up so that it is difficult for me to do much of anything. I am having a severe muscle spasm.
            It feels as if there is a dinner plate in my back so any movement is awful. It is called something but I can’t think of the word right now 🙂
            I hope you have a wonderful 4th. I am glad it is still a big deal for everyone.
            I will e you soon 🙂

          16. Looking forward to hearing from you and hope the back eases up as the dinner plate empties! I can’t wait for the yearly schedule and sometimes think that is not my destiny. Oh well, I will march in for all tests as required now…eeek!


          17. Good deal! Happy 4th of July to you!!!! It is a big celebration here in Coronado. We have the largest parade in San Diego County!! They line up and down the streets that surround my home so I just walk around and meet the people, pet the horses, etc! Bands playing , clowns walking by…I never have to fight the crowds at the Parade route as it is here in my yard!! SOOOOO much fun! All class reunion for my High School at the Golf Course…annual event for at least 70+ years. It is my 45th class reunion so I will try and go and see if I can dance…I have been this morning! Thanking God for my second chance at Life!!! Going to be a living testament for the band tonght…maybe…ha-ha. Got a lot of cooking ahead today for BBQ tomorrow at my home! Oh well, we will see if I am still awake…morning person! Once again, Happy 4th, we have soooo much to celebrate so eat your”salad” and let’s dance! Louise

          18. Hey there my friend! Oh you sound so good. I envy you. I am stuck in one spot but living vicariously through everyone who is cooking and getting ready for the 4th. I know it is now the 5th, this is what I would have written if I could have gotten to the laptop yesterday 🙂
            I worked on my low back all day only to wake with nerve pain today, ugh. I am an all or nothing kinda gal LOL
            I hope you had a wonderful day you are in my thoughts. I hope next year I will be able to celebrate the 4th. That is the good thing, with hope there is a future for all of us. Much love this morning Louise, Dee = Dorene.

          19. Doreen, I do so hope you are feeling better today. I am positive you will be all fixed up for the next 4th of July! I understand the one day forward 3 days back feeling as I still have that happen and often find it scary. Long so much for those carefree days when I did not worry about EVERY ache and pain or simply just feeling lousy. Going for a walk now as I ate way too much yesterday and not the kind of food I normally eat…freedom it was a wonderful feeling!!! 🙂 Louise

          20. You are so right, I too long for the days when I felt good. When everything was right with the world as far as my health was concerned. I wish I had known back then what I know now. Last night I woke and couldn’t move due to the nerve pain. I am still hopeful it will improve over time. Thank you so much for writing and for sharing your 4th with me. I love the picture, Dee

  14. Hi Karen,

    I did not realize that you had taken the time to write also as I did not see your post until today. I think I may have answered it in one to Dee. Whoops.

    Yes, having gotten rid of the disease is sooo important in the recovery process. You should have a much smoother go of it. The first 4 months after surgery, prior to the return of the dread HCV like a dragon, I felt like I did 20 years ago!! Then it was difficult and I felt dreadful. Like I have been writing Dee, it is curable and then things start to get better but it does take time that you will not have to give. One of my care providers sister had a transplant about a year before I had mine and she was back to work in 6 months and feels great! She is in her 60’s.

    Like I mentioned to Dee the adrenal gland is a bummer but I would do it again if it meant life, even though I have to try harder to accomplish all I want to do. Still walking and did my 2.8 miles today!

    I sent you a card when your address what posted. I hope you received it. I waited a week or so to mail it so you could recover some. You may have received so many that it got lost in the shuffle. I hope not as the words came from my heart to you. It was from Coronado, CA to let you know how far your words and story were travelling and people that care and prayed for you. 🙂

    Thank you for being such an inspiration to all! Thank you again for writing me personally.


    1. Oh Dee, don’t cry…that is my job and I am sure I do enough for two! I am glad that you have children, that is a Blessing that you have children. You just never know when or if they will change their minds! I have a friend who lives far away now and her daughter decided at age 39 to have children and has 2 so she is now a grandmother and not unwilling to share…her daughter lives in Switzerland as she works for NATO so she doesn’t see them like she would like or I would like. It is interesting who stays in your Life and who just “drops” you. Like I said my husband’s two sisters live in town here (one just moved but not far) and did not even call. Never received a thank you card for wedding gift from one nephew last year or a Christmas card and they live less than 15 miles away. Oh enough of that pain. We have overcome much more internal and external pain so are better for it. Being an only child and now having no family is difficult. My girlfriend really hurt me this time and at Thanksgiving…a true time for sharing and being grateful for and to all. My husband’s stroke has taken him away too, mentally. He has permanent brain damage and has since the massive stroke 9 years ago. I so want to go forward and will when I know or God decides it is right…actually both are needed and the strength. So let’s be happy that we are in touch to help one another and ALIVE!!! The alternative is not an alternative…ha-ha!! Take care and cry no more…it makes you tired! My heart hurts enough without breaking anymore!! Thanks for the pick-me-up note. Louise 🙂

      1. Dear Louise, you are so right, we need to be happy with what we do have instead of focusing on what we don’t. I am going by train to see my parents from the 3rd to the 10th so am getting ready now, washing packing etc. I will try to stay in touch however may not have access to a computer while there.
        Thanks so much for writing, I really appreciate so much 🙂

        1. Dee,

          Bon Voyage!! You are sooo fortunate to have your parents in your Life!! Cherish every moment and have fun… 🙂


          1. Good Morning Louise! As nice as it was to see my parents I am happy to be home n my own bed. The train ride seemed much bumpier than normal. My son said maybe my back is more sensitive due to the back surgery. Maybe he is right. I think I mentioned that 12 weeks ago I had surgery. I’ve probably mentioned too many times. I am going to plan on taking it easy today. Tomorrow is wash day for my family which means I wash clothes they watch TV. Then I hope to begin to decorate. Even though we don’t have much in the way of presents I think it will lift my spirits to decorate. My Mom and Sister have begun to decorate and it really put me in the spirit. Now I just have to remember where everything is ha ha
            I live in a small apartment so not much space. We have things under the bed, in closets on shelves, in a storage room. Sorry, I just had my coffee and am zinging along. I don’t know if you would be interested but after the interferon I found a study that showed that it reduced our dopamine, our feel good chemicals. I went through two treatments I first started with protein powder drinks with milk, bananas, sometimes kale. The protein contains branch chain amino acids. Then I started taking L’Tyrosine. It makes a huge different in my mood and energy.
            Just a suggestion. Talk to you soon, Dee

          2. Dee,

            Happy to hear your trip was fun and full of love and joy! It is that time of year! I just finished (90%) my decorating and now have the cards ahead of me! Eeek! Thank you for your info on the dopamine. I did that treatment over 2 years ago and think it is just a traumatic stress thing from surgery and Life now! Things have been very difficult and many people I thought were friends have disappeared. Fear of death or illness. Can’t figure it out but it does hurt my feelings, deeply! Guess, they weren’t really friends. I don’t have any family, as I have mentioned, and my husband’s want to remember him the way he was before his stroke so they don’t even call or invite us for Holidays. I know they don’t care for me as I have challenged them on their behavior but feel they should honor their brother, sick or not, mentally challenged or not. Oh well, the famous, oh well. Not to be a bah-humbug…just lamenting and a bit lonely. You are fortunate to have family. I am going to sign off for now. I do the protein powder in my fruit shake, but have to watch bananas and many things due to high potassium caused by one of my meds. It is a trade off with food for me and many things. I am alive and need to be more grateful for that. Just a bit tired. Louise

          3. Dear Louise, my friend. I wish we lived closer together. You are my kind of people. I’m in Virginia. How far away are you. I’m so sorry you have lost so much. Our family gets smaller all the time as people move away. First my parents, then my Aunt to NC and now my last Aunt moved to Texas. I miss them terribly. When my back recovers from the train trip which seemed longer and bumpier than the last trip; I plan on trying for a part time job. My son thinks i was more sensitive because of back surgery. I am thinking January but I’ll have to wait and see 🙂
            Talk to you soon

          4. Happy Holidays Dee! Yes, I wish we lived closer also! I don’t have but a couple people I can call friends here. You are so lucky to have family! I would think ANY back surgery would make you sensitive for a LONG time. I still can “tweak” my side from surgery and it has been almost 4 years!! Visits are fun with family and sometimes just as frequent as when you live close as people get busy. Enjoy all! I will be on the computer a little less as the holidays approach…it is a happy/sad time for me. Long story! Take care and ENJOY! Louise

          5. Dear Louise, thank you so much for writing. I am happy to hear from you, understand during the Holidays we will both be busy. Write anytime. While I was gone from 3rd to 11th I still tried to stay on line. Now as Christmas is coming so fast I find I am not ready. Even though it will just be me my husband and my son I find I have their presents to wrap. With the back pain I could not put the tree up so bought a tiny one and found some tiny ornaments. It is cute, not exactly what I am used to but worth it not to feel the agony in my back. Thank you for sharing your surgery experience. I guess the train ride at 3 month post surgery was a bit much. I am slowly feeling better but find I can’t do alot or I get pain in one spot. Email me anytime! While I was away I did not check emails and now have over 700 emails to go through, I am slowly chipping away at it. Merry Christmas my friend. D

          6. Hi Dee!

            Well, I am behind on my last minute duties so I will wish you a very Merry Christmas and then if I miss the day get back to you after cooking, etc.! Take care and enjoy!

            Louise ~<;o)

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