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Living with Hep C for 30 years

As my title reads, 30 years (or is it 35?) Of living with hep C has been no picnic…I had not been seen by a any doctor on any regular basis and kinda winged it on my own. That meant I was living on the edge of fear daily! When I contracted it, it was known as hepatitis non A non B, therefore I watched from the sidelines as the world of hepatitis C and her medical discoveries were born. I watched as people tried new treatments, were cured along with watching as the numbers of people infected grew. I read horror stories, success stories and watched people die from this ugly disease. I myself recall a time that my friends took me to the local E.R. because I had turned a greenish color. I remember weeks of being on the couch in and out of sleep feeling like I couldn’t lift my head off the pillow. I especially remember the day I was diagnosed…and the devastation I felt. I always wondered how much longer I had to live. In 2016 I began having stomach problems, problems with my bowels, digestion and I felt closer to death than ever. Again, I went into the E.R. and experienced the battery of tests…and am still going through said test over and over again through out this year. One thing has been made clear…after 30 or 35 years of living with hepatitis C, amazingly I am in stage 1 , treatment isn’t even offered to stage 1 people! Here, I am with my images and tests and labs showing stage one or close to undetectable! I don’t understand …I figured I was in end stage by now. I don’t know why I am only stage 1 but I thank God every day. Of course I do not recommend going through life without being under doctors care…I just got lucky. Take care of yourselves and God Bless!

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Comments

  • DrLuv
    2 years ago

    I cant tell you how helpful your post has been to me Ruthfether
    I have had hep c for 34 years and I can relate to everything you wrote.
    Because my insurance is terrible I have had to do my own online research. And whedo l look for examples of hep c exhaustion I read things like people saying they are having a hard time standing on their feet all day at their job. That is NOT the kind of exhaustion Im talking about. Im in bed for days at a time. There is no way I could work! When I have a good day I try to run errands and clean the house because as soon as that energy is spent it will be hard to get dressed.
    I have no idea what stage Im at. My liver enzymes are elevated but not over 100 for either ALT or AST. Im retired and low income and there is no way my insurance will cover harvoni or any other cure. Lately Im having memory lapses. After I write this in 6 hours I wont remember if I wrote this today or yesterday. My eyes are always a slight tinge of yellow but nothing the average person would notice. Sometimes I tell myself that Im just depressed and that the exhaustion is all in my mind but there is no way I would lay in bed all day if I wasnt exhausted. I get too bored and have too many hobbies that interest me to just lay motionless in bed for 5 days.
    I seriously doubt I have cirrhosis and I wouldn’t be surprised if I had a liver biopsy that the results wouldn’t be that bad. But there definitely needs to be more information out from the medical community that confirms a person with HCV for 30+ years can definitely have debilitating exhaustion, severe memory lapses, neurological impairment and an overall feeling of sickness.
    Thank you for sharing.

  • Ruthfether author
    1 year ago

    Hello!
    Sorry It has taken me 11 months to reply to you…Thanks for reading my story.

    In your comment to my story, you had talked about Liver Biopsy…I personally have never had one but I know people who have had…
    But what I was trying to get at is, that I have (Medical- California) and it paid for me to have the sonagrams ,CT’s and MRI’s. All now, are tests they use to see what’s going on in you! They are all not invasive( they do not cut into you) They are not painful, yet they can find out all kinds of information about not only your Liver and genotypes they can Stage you.
    Really, after having all And all done …I feel better… And knowing where I am in my disease helps me not to live in fear!
    I have also been where you are with your exhaustion. I have not suffered with exhaustion like that in years…I would talk with your Doctor.
    I don’t know if my symptoms are better because I am taking better care of myself or what.
    Hoping you can get into a Doctor, with your insurance!
    As one of my daughters once said to me:
    A closed mouth does not get fed!
    God bless and good luck to you!

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