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Share Your Personal Hepatitis C Story

December 11, 2004

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Would you please share your Hepatitis C survival story?

This is a chance for you to tell all about your personal experience with this disease—and possibly have your words seen by thousands of other patients who could be helped by your insights.

We are putting together a collection of patient stories in a book as part of our patient education and advocacy mission. The purpose is to provide a realistic frame of reference for all Hepatitis C patients. A frame of reference gained directly from others in similar circumstances, with shared experiences.

We believe this book could help all Hepatitis C patients better cope with the fear, confusion and adjustment that inevitably come after a Hepatitis C diagnosis.

Your own personal experience might be extremely valuable for others to learn from, especially as part of a collection of Hepatitis C survival stories from a wide variety of patients. This is true whether you you believe your experience to be extraordinary or commonplace.

Please consider that your own story could be just what someone else needs to hear to get them through—even if you don’t think there is anything particularly special about it. Even if you’ve never really told it to another patient before.

I’ve heard that a burden shared is a burden halved. Just knowing others have gone through, or are going through, similar circumstances can do a lot to help one deal better with any reality that confronts them. Your sharing could help others who are very much like you. And, you may find the simple act of sharing your story to be therapeutic for you, as well.

As a Hepatitis C patient, you can probably understand how it might help others immensely if they have the opportunity to learn from your experiences (both good and bad).

Wouldn’t you like to know how others have dealt with (or are dealing with) Hepatitis C in their lives? In the same way, other patients might very well appreciate knowing about your experiences.

If you have chronic Hepatitis C and you are reading this email, then you are a Hepatitis C survivor. If you are here today, then one way or another, you are surviving. You have probably survived decades with this chronic, potentially deadly disease (although you were most likely unaware you even had it for most of this time). Since your diagnosis, you have dealt with this disease in your own way. The disease has affected your life uniquely.

Each and every survivor’s story is unique. We want to consider yours for inclusion in this collection. Think of it as a potential contribution to the entire Hepatitis C community.

Incidentally, once the book is published you will be able to get a copy for yourself at Amazon.com, or your local bookstore, to see how other patient’s stories are similar and different from your own.

To make your submission most informative and relevant, you might look at sharing the following aspects of your experience:

  • How did you discover you have HCV?
  • What genotype do you have?
  • How elevated were/are your liver enzymes?
  • How do you believe you contracted it?
  • Do you suffer physical symptoms from the disease? If so, what are they?
  • How were you affected emotionally when you found out?
  • How did your family react? Your friends? Your lovers?
  • What did your doctor say? What was their recommendation?
  • What did you do to learn more? Where did you find the most helpful information (recommended resources)?
  • Did you get a biopsy? If so, what was it like? What did it show? If not, why not? And what did you do instead?
  • What stage and grade is your inflammation/fibrosis?
  • Did you choose interferon therapy? Why (or why not)? If yes, what was your experience with it?
  • Did you make lifestyle changes? If so, which? If not, why?
  • Did you choose nutritional supplementation and/or other natural remedies? If so, which and why?
  • Did you join a support group or online bulletin board?
  • Do you have health insurance? Is it covering your treatment choices?
  • What about Social Security or disability insurance?
  • If you are veteran, what has your experience with the VA been like?
  • Has the disease affected your job?
  • Are you secretive about having the disease because of concerns about what people might think or how it might affect your work or social relationships?
  • If you’ve cleared the virus, how long have you been undetectable?
  • If you are on a transplant list, what is that like?
  • If you’ve had a transplant, what would you most like to share about that experience?

These are just suggestions. You can be detailed or brief. You might consider elaborating on just one or two of these topics. You may choose to address them all, and more. The fundamental question is, “what do you think is most important for others to know about your experience with Hepatitis C?” The choice is yours. We simply ask that you keep your submission to no more than 1,000 words. And we reserve the right to edit appropriately.

You can participate anonymously with your first name and last initial (along with your state of residence) or you can give your full name and state (or country if not in the USA).

If you choose anonymity, with first name and last name initial only, your anonymity will be respected and protected.

Send submissions to [email protected]

We will let you know whether or not your story is chosen for the book. This is not a writing contest. Stories will be included in the book based on their appropriateness as part of the entire project. They will not be judged on grammar, punctuation or writing style. Even those not chosen for the book will be posted directly on an associated website for public access. That way, even if not included in the book, your story will be told.

Thank you, in advance, for sharing your story.

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HepatitisCentral.com provides information regarding hepatitis and liver disease. Comments are available to the community in order to discuss these topics and obtain answers to questions through community members. The Editors at HepatitisCentral.com will not be responding to questions or comments posed in article comments.

  • Raye Chakur

    Hi: My brother is in need of a kidney, so i went to get test. i was a perfect match for him..i went for all testing and they told me three different times i had to come back for blood work. the last time is when they told me i had hep. c. i was very angry at myself and at the world. i’m still very undeceid as to what i should do. my doctor told me i must take the shoots three times at week, but im still not sure that the best route for me. has anyone out their had the shoot….did it help? are you worse now than before?

  • Ty

    I went through 48 weeks of treatment and am a non-responder. I feel fine now but my viral load is higher than before treatment. 850,000. My doctor at the VA says learn to live with it but doesn’t tell me anything else because he is not educated in Hep C. I have an appointment at the LA VA liver clinic soon. What should I be asking? Does anyone else know what to expect? Quality of life? Prognosis? Any info would be helpful.

  • amthekim

    Hi, I’m Kim. =) I just found out last July that I have HepC Type 2B. I began my interferon (Pegasys) once-a-week injections and 800mg ribaviren (Copegus)everyday on Nov 5. Today’s my half-way mark and so far my labs are normal (liver enzymes normal!) and my side-effects manageable (so far). I had labs taken yesterday to check my viral load. Hopefully, it will have been reduced by >100-fold. My initial viral load was 5,050,000, so I’m hoping it’ll be less than 50,500. I work full time and have kept up fairly well despite having a lot of diarrhea and tiredness, not to mention looking scary with flaking skin and leaving strands of hair all over my shirts and chair. =P The way I found out was unusual and led to an investigation by the state medical board. My liver enzymes had been elevated for many years – and was attributed to assumed fatty-liver disease since I’ve always had to battle the bulge. Ealier this year my feet and ankles were swelling horribly all the time and I worried it was my blood pressure. My family doctor, on a whim perhaps, finally tested me for Hepititis. What disturbed me was exactly a year prior to that, I unsuccessfully underwent invitro fertilization for which the reproctive clinic (not my wonderful family doctor) tested me for Hep and Aids prior to the procedure and the eventual cost of >$20,000 out-of-pocket cash NOT covered by insurance. My test was positive, but they claim now to have “overlooked” it and told me I was negative. =/ Suffice to say, we would NOT have proceeded had we known. Although they say all their patients who have tested postive opted to continue, we would not have. Our age, health, and prior preganacy failures were all stacked against us – that MAJOR revelation would have definitely tipped the scales to NO. *sigh* I was shocked and felt betrayed – as if they brushed it aside like it was no big deal and were in it only for the money. Well, my health and well-being are a big deal. And we had to beg and borrow for the money … we’ll be paying it off for years to come when we didn’t have to borrow it after all. I think the clinic thinks we have sour grapes from not conceiving, but it’s not. We knew the risks of failure and accepted it – we were grateful to have had the chance to try. BUT – that was before we knew how sick I was. Presently, the state medical board is investigating. I’d love to have our money refunded, but no attorney will write a demand letter on our behalf or sue – there’s no good money for them involved. =( Anyway, I try to remain optimistic about the whole situation. I don’t know anyone else with this disease and have no one to talk to about it. But, so far, I’m doing well on my own. Just wanted to share with you all my particular story. By the way, the only possible risk factor for infection that I can recall is when I was 18 and experimented with IV drugs <10 times. I was stupid and invinsible at the time. Just goes to show ya that even one exposure is all it takes. =| Thanks for reading my story and write anytime you like. Take care, fellow Hep C’ers. =)
    Kim

  • tea-rose

    This is the sight I have been looking for. I would like to hear what others have gone through.
    I am fairly new to all of this. I am a 47 year old woman that was diagnosed in June 2002 after trying to donate blood. Needless to say they told me “No Thank-you!” At that time my doctor put me through several tests and concluded that I was in pretty good shape considering. My most likely exposure was in 1982 from several blood transfusions during surgery for ulcerative colitis. My doctor told me that I am genotype 3 subtype 3a and that I had a viral load of 85,300. After doing a liver biopsy I was told that my liver is stage 1 (minimal fibrosis) and grade 1 (minimal inflammation). I returned the next year for a followup and was told at that time that he wouldn’t recommend putting me through treatment and that new treatments were being worked on that would be easier to tolerate. He said that they would call me when they found something that I would be a good candidate for. After that I just let it go, but lately I have started wondering if I should be watching my progress more closely. I guess I am wanting to hear from someone that has been there what I have ahead of me. When I read the symptoms like fatigue both mental and physical and some of the other annoying things that come with this disease, I worry that maybe I am getting worse. But then I read about people that have things a lot worse than I do. Should I be worried that this will suddenly flare up, or doesn’t it work that way? The more medical journals I read the more confused I become. I don’t know if they are talking about me, or someone that has a different type than I do. If lack of energy is the only thing I am dealing with, then I don’t have anything to complain about, but I do worry about what the future brings.
    The Lord will be with me no matter what is ahead, but it would be nice to prepare myself.