Best Friend Guide to Hepatitis C

 

 

 

 

 

Welcome to Your Best Friend Guide to Hepatitis C. The moment I learned that my body had been harboring the Hepatitis C Virus, a myriad of questions swelled and yelled in my mind like a crowd of angry protesters. It didn’t help that I was in a stage of shock and denial and my brain refused to hear what it couldn’t handle. What I needed then, and still need now, was a place to learn what was happening to my body. I desperately searched for medical information, browsed for nutritional advice, and clung to any shred of testimonial that might give me hope to survive. I looked for inspiration, how-to’s, and hard cold facts long into the night. The loneliness itself was insurmountable.

I needed a best friend. Ok, let me rephrase that. I had friends, family, sisters, a daughter. They all stood guard like sentries posted in my hospital room and at home, protecting me from my own overwhelmed thoughts. They listened to doctors, and then broke information down repeatedly, to themselves and to me, in an effort to find our new reality. But I needed a best friend who had been there, one who knew about Hep C, it’s side effects, treatment, and prognosis. Maybe I even needed a friend who was scared to death, scared of death, and scared enough to make big changes. Yeah, I needed a friend who was fighting for their life.

I found those friends on the internet. Some were on forums where we communicated, and others were personal stories shared once on a website, and then lost in cyberspace. Those friends became everything to me. I considered them a part of what I called my Allied Health Team. In fact, those friends helped me disseminate facts as my doctor tried to explain test after confusing test results to me. I journaled a lot of that information along with nutritional advice, treatment options, relief from side effects, and advice the doctor didn’t give me.

I love new ways of looking at and applying information. I get the value of evaluating sources for reliability of content. But don’t we all know that occasionally a nudge of advice, humor, or a far fetched idea from a best friend can be the one thing that turns our day around? Suddenly we think outside the norm. With a best friend’s help, we can flip over that mental mattress and get a fresh start on what has become an old subject for us. The reality of dealing with a life threatening virus becomes more manageable.

My blog will be based on my understanding with Hepatitis C. I will share my experience with Ribavirin, Interferon and protease inhibitor treatment, also referred to as triple therapy.  It will also provide information regarding my ongoing battle with cirrhosis. I’ll tell you what best practices worked for me and others like me. I want you to share your best practices too. I hope we’ll share how we shop for and cook a liver lovin’ diet that is not boring and bland! I’ll help you find your way to information and advocacy sites. I’ll always need best friends to share the ups and downs of liver disease with. Consider this a welcome to your Best Friend Guide to Hepatitis C.  I’m glad you stopped by and hope you’ll come back soon. Karen 🙂

P.S. I’m not a doctor. I’m just a hepatitis c survivor. I was on triple therapy for 43 weeks. I still have grade 4 cirrhosis. Please contact a health care specialist regarding any questions you have. My advice is anecdotal and not to be replaced with sound medical advice

 

Best Friend’s Guide to Hepatitis C

33 thoughts on “Best Friend Guide to Hepatitis C

  1. I am undergoing treatment…started Jan 15 and I am so very, very sick…I am starting to feel scared. There is no one who seems to know much about the treatment. I found your blog by fate I guess…

    1. Hi Jill,

      I’m so glad you came by and commented. It is a lonely time when we are treating. You are having a lot of side effects? I added you as a facebook friend and will get more info there on private message.
      I’m so very very happy you found the support you need.
      You are never alone. xo
      Karen:)

      1. Thank you Karen. I have been following the group on fb and your blogs. I have just moved back in with my sons as I was afraid being by myself. I am sorry to inflict myself on them but I have no choice. There is no one else to help and I am very grateful and lucky to have them.
        I have always been a survivor…through abusive relationships, sleep apnea and other medical issues. However I must admit I feel this treatment kicking my ass. I wonder if it is worth it to suffer so much every day. My dr just added victrelis to my ribo and pegetron injctions. I have been in treatment since Jan 15 2014….forver. I vomit everyday. Something I can eat one day makes me gag the next. I started on 6 ribo pills and am now down to 2 a day because of my blood being too low. Aftr 4 weeks my virus is undetected but I still have to continue to suffer ..there is no let up. I never feel like a walk…I have 0 stamina. To get from the car after a dr appointment is a feat in itself. and I am alone….there is no one to talk to who understands what this hell is like Sorry for all the negativity. I know it is not the way to get through this but I haven’t been able to shift my mood. cAN I Live like this for 28 more weeks???

        1. Jill,

          You are a survivor dear friend. I’m glad you have your boys to help you out. I know what you mean. They will look back on this and admire the way you made it work.
          You know what? I really remember those days. It was just an hour by hour, day by day thing. It was hell. I had every side effect to the max. Sounds like you’re going through it too. Don’t give up. You can vent to me any time hunnyo. I understand. Be negative, you’ll get PAST this.

          Promise,
          Karen:/ xo

  2. Hi. My name is Emma and I found out I have Hep C last night. I am still very numb to the reality of it, but also very scared. I’m 16 and have no idea what to expect. I just wanted to thank you for this information. You are an angel! <3

    1. Emma,

      I am so sorry to hear about your diagnosis. You are so young. Just on the brink of life dear one. I can say with a lot of certainty that you probably have a healthy liver and can live a long life. I hope that you will be considering treatment soon. You are in a great place to get healed and start with a fresh and new beginning!

      My story may seem frightening to you. I had Hep C for many years and did not know. Modern medicine saved my life, but I ended up with a lot of liver damage. What a miracle that you found out so young! I hope that you will dream big dreams of a beautiful future and then begin to walk toward them one day at a time.

      All my best to you for every success in treatment, nutrition, and a life filled with love,
      xo Karen:)

    1. Well dear one, most days it means I have to deal with a lot of brain fog and fatigue. How about you? I push hard to keep going, and even use a little caffeine in the morning during the school year. I’m writing now on nutrition and the role it plays in every function of our body and our daily life. I swear that food is my energy monitor.

      Of course I am not working since they found that tumor. I’m getting a lot more rest and actually think it has GOT to be helping. Are you trying to work? I hope you’re off today and enjoying some rest. Thanks so much for dropping by!
      xo Karen:)

  3. I stopped working in June. I found that brain fog was detrimental to my work efforts. I am thinking of applying for disability.
    Thanks
    Barb

    1. Barb,

      I just filed online a couple of weeks ago. I wanted to get it out of the way before the tace procedure. If you have your doctor’s name, address and phone number – it is so helpful. Even though I had all that in front of me, it still took me 3 hours. You can save and take breaks! Have you set up your account online yet with social security?

      There is no way in the world I could be working right now. The brain fog is tough. I have to take a lot of breaks! Let me know how it goes with SSDI.
      xo K

  4. Wow, 3 hours. I will try online. Let me know how your case progress’s. I will start mine also. My best to you! Yes,have Dr’s and hematologist’s numbers.

    Barb

    1. Good morning Barbara,

      After you submit it all, they will call you for an appointment. Or you can call them. You have this interview and they send you to a shrink. Be sure and let your doctor know you are filing and that can help a lot. You will be filing under cirrhosis, I assume.
      It’s normal to get rejected once, so you may have to file again. I’m learning all this. My transplant team gave me some advice on how to do it.
      Good luck!
      xo Karen:)

    1. Hay Barb,

      I just wrote a blog on TACE. It’s the chemotherapy for my liver tumor. They say a transplant is the only cure for liver cancer. The TACE will shrink the tumor and keeps it in check until a liver is available. It is scary, but if your insurance will pay… maybe now is the time because the wait can be long.
      xo Karen:)

  5. Hi Karen! My name is Jendayi Talibah and I was diagnosed twenty years ago with Hep C. Now I have insurance and in March went to my Doctor’s office and had all these tests done. I am somewhere between stage 3-4. My doctor says I shouldn’t be here since I was diagnosed with a biopsy of early cirrhosis. I am here though….. the irony of a cure for Hep C but my liver is damaged from the Cirrohsis.
    I appreciate finding your blog and the way you explained each stage. Thank you Karen

    1. I’m glad we found each other. Thank goodness that the new medications are easy on your liver! I hope you can treat soon and get that damage from increasing. After you get rid of the virus, with a good diet, you can liver many years now.
      Thank you for writing. You’re so welcome my friend. xoxo Karen

  6. Hi I am in the uk G3 F4 have had this 30+ yrs diagnosed Dec 2016 I started treatment 6 weeks ago I have 6 left to do sof/rib/interferon I have had all the sides and am feeling awful at the moment my hosp nurse has just phoned to say that my red cells are to low abd to stop 2 of the rib a day I an taking 4 my last blood yesterday showed virus undetected …. I am 65 any food advice is good I am not hungry and have lost a stone

    1. Hello there! Congratulations for getting half way. I am sorry you are feeling so sick. When I felt like I just could not eat a thing I would make a protein drink. Here we have something called Ensure, its meal replacement. You can add ice cream to it to make it taste better. Also for some reason when I treated, I could not get enough yogurt. I ate it all the time. Stopping a couple of the ribavirin should help you to feel a bit better. Try to keep drinking water, water is very important while treating. The medication seems to cause dehydration and that can add to the side effects with aching pain. Karen at a lot of oatmeal, soothing to her. Applesauce can be good. Karen has a list of liver loving foods on the main page in the upper right hand corner if you are interested. Take Care, Dee

  7. Hi Karen,

    I hope all is well. I’ve been reading a lot of your posts and haven’t seen any updates since your transplant, maybe I haven’t gotten that far yet.
    My husband was diagnosed w Hep C years ago. He did a treatment about 12 years ago that didn’t work, interferon I believe, and another a few years ago that did work. His Hep C is undetectable so I’m hoping cured? However it left him w cirrhosis and just recently discovered tumors. We are meeting w a team of doctors on Thursday to discuss that TACE procedure and we also have an appt at another hospital next Monday. They will be seeing him for the first time, it’s a highly recommended cancer institute. I’m guessing we will proceed with them after these meetings. I don’t know much about anything yet, my husband didn’t tell me right away that he has cirrhosis or tumors. I’m not sure he is processing all of this, he seems unconcerned. Shock maybe? After TACE he will be going on the transplant list as well. I’m hoping I would be a match, I’m nervous as we have 2 young children. I’m not sure what the risks are to myself if I were to donate. It’s just scary. I don’t want my kids to lose their dad, but losing both of us…..I can’t even think about it.
    Your blogs are so very helpful. Thanks so much for sharing.

    1. Oh honey. ON the home page, go click on the “start here” sign. It’s a checkered flag on the right hand side of the page. There is a whole section of titles on cancer and on transplant.
      I’m doing very well. My newest blog about my donor just went on.
      It sounds like your husband may have hepatic encephalopathy. Ask the doctor about that. Maybe lactulose can help him. It is very common to be totally brain foggy. I had the TACE and wrote a blog about that. Check out my youtube channel also. It has some help for cancer and Hepatic encephalopathy. I was too brain foggy to write, so I made videos.
      I hope everything will encourage you. It’s SO very sweet of you to offer to give him part of your liver, but that may not work in every case. The doctor will tell you. Take care of yourself and the kids. These things work out with time. I hope you can find help on the site. Let me know and I’ll try to check often.
      xo Karen

  8. Hi!
    Thank you so much for replying! I have been addicted to reading all of your blogs, there’s a lot of really great info here! It’s much more positive and helpful than the “doom and gloom” you described, and I found, on the internet.
    We are at the ER as I type this…..my husband had the TACE procedure yesterday morning and was up all night vomiting and in pain. They said he has post embolization syndrome and suggested we come here to the hospital to change his meds. He has been sober and drug free for 21 years, so he refused the narcotic pain meds and is realizing he shouldn’t have. If taken properly and responsibly, sometimes you really do need them. Lesson learned for next time because now they refuse to give them to him. They did give him Toradol and anti nausea meds via IV and he’s snoring away…..hopefully we’ll be going home soon. I will continue to read your blogs and if you’re interested I’ll keep you posted. We planned a trip to Universal Studios in Orlando next Wednesday, obviously before we knew any of this was going on. He has 4 days to recover and he’s hoping he feels good enough to go. He plans on taking it easy while at Universal, it could really boost his mood. We will see! Thank you Karen and best of luck to you!

    1. What a story you have. I’m sorry to be so late in response. I took time off. First, let me congratulate you for getting this far and also for going on planning life in the middle of all this. What a great wife you are!!

      I glad that he took yours and the doctors advice and got some pain meds. I had to have some big drugs over the past few years. Just enough to help me stay comfortable during some of the treatments and post transplant. Maybe he is relaxing now and recovering from his trip to Universal Studios!! That is what I’m praying for him.

      All my best to your whole family. Keep me posted on his progress. This is an opportunity for him to rest and heal.
      Much love, xoxo Karen

  9. Oh, and I’m definitely going to ask about HE. It’s really amazing how much work the liver does and the effects a sick liver can have on all areas of the body. He’s been on a low sodium diet and I buy mostly organic, I plan on buying a juicer and trying a lot of your recipes and suggestions. We are what we eat, it can’t hurt. Anything to keep him as healthy as possible. Thanks again!

    1. Hey there! I wanted to mention that there is a reasonable priced mixer that liquefies everything, much like those expensive ones advertised on TV but it is less than $30. It is called a Bella and can be purchased at Amazon. I’ve seen it at different department stores as well. Good luck to you

  10. Another thing……his meld score is a 12. I wonder if it will go up when we go to his follow up appt in 3 months. Just thought I’d mention that, I actually got most of my info and listed questions for the doctors while reading your websites! I said it before but it’s really very helpful. Thank you again.

    1. You’re so very welcome. And thank you! I know exactly how you feel looking for good news. I hope that you have gotten some. A MELD of 12 is not so bad. He is fairly compensating, it sounds like. I wonder how the varices banding went and if he is now on meds for portal valve hypertension?
      I look forward to updates!
      xo Karen

  11. My name is Kathie. I am 64yrs old. I completed my Hep C treatment 6 mos ago. I had Hep C for a long time before I was diagnosed. I am Hep C free now. My only side effect has been hair loss. I am in Stage 3 Cirrhosis now and pre diabetic. I feel like I’m losing at this battle. I weigh 240 lbs and have COPD as well so my exercise regimen is limited. I need a simple diet that I can adhere to. I know if I don’t do something drastic I won’t make it for long. Can you please help me in some way?

    1. Have I got some help for you! I get so many messages asking for menu plans and easy recipes. So I’m putting out a book and it will be ready in a couple of weeks. Please check back and then let me know how it is working for you!!!

      I think you’re wise to be seeking out help. Even at our age, we can heal our body and get strong again. I have a few friends with COPD who are doing yoga to build up their lung strength. I plan on making a video to help with that! Stay in touch. I’ll be praying for you. My mom had COPD and I worked with her a lot to help her stay active. You can do this!
      xo Karen

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