Thirty Years with Hepatitis C

By ruthfether

1 min read

30 years (or is it 35?) of living with hepatitis C has been no picnic...I have not ever regularly seen a doctor and winged it on my own. That meant I was living on the edge of fear daily! When I contracted hepatitis C, it was known as hepatitis non A non B. I watched from the sidelines as the world began to better understand hepatitis C and its treatment. I watched as people who tried new treatments were cured along and watched 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 when 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.

The undetectable diagnosis

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 tests over and over again throughout this year. One thing has been made clear...after 30 or 35 years of living with hepatitis C, amazingly I am in stage 1 and treatment isn't even offered during stage 1! 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 the 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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drluv Member
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.
1. ruthfether Member
 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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