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Re: [GIWorld-Hepatitis] Digest Number 142

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  • byteme
    Marty, Thank you for your thoughts. I understand how hard it must have been for you both. I am so happy your wife is undetected and finished with treatment! I
    Message 1 of 3 , May 7, 2000
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      Marty,

      Thank you for your thoughts. I understand how hard it must have been for
      you
      both. I am so happy your wife is undetected and finished with treatment!

      I would like to share your letter with my husband if I may?

      We discussed whether to do treatment or not to do treatment on the way
      home
      from work Friday, weighing the pros and cons. Lots of cons. However, two

      factors really stand out - I feel awful with this hep, and there's a
      chance
      to be rid of this virus.

      I'm 44, 45 in a few months. I'm premenopausal. I've many years left to
      live
      and enjoy my grandchildren. If I continue on as I have been, my hep
      symptoms
      making me so very tired and achy, I can see me quitting work in a year
      or
      two, just unable to maintain a regular job. I wish I could quit now.
      Many
      days I do not want to get out of bed.

      However, if I do treatment now, I've a chance to live the rest of my
      life
      hep free, to be able to return to some kind of "normalcy". As a creative

      person, this means a lot to me.

      Then there are the cons of treatment - illness, possible thyroid,
      diabetes,
      heart or lung problems, etc. Yet those are small chances and most of
      them,
      if I understand what I read correctly, go away after treatment if they
      happen at all.

      When my husband first heard my gastro speak at our support group, he had

      tears in his eyes. I think it was the first time in 10 years he realized
      the
      mortality of this disease. He wouldn't discuss it with me for 2 weeks
      after,
      but finally did. I had been living with the symptoms since 89 and it
      amazed
      me that he was just now, in 99, beginning to understand the scope of
      hepatitis C. He's a wonderful husband, very loving and attentive, yet
      like
      anyone else who has not experienced a chronic disease, he just had no
      concept.

      I have a viral load of about 1.3 million. The doc says low viral load is

      good, easier to get into remission. My genotype is 1b, not great, but,
      like
      your wife, I do know some people with the same genotype who have gone
      into
      remission. My biopsy was "very mild fibrosis/inflamation".

      So do I wait around perhaps 10 years and I'm 55 or older for treatment,
      still feeling so bad I can barely keep a job, already having to alter my

      career path from a stressful demanding exciting job I love to one where
      I
      sit on my bottom all day doing mindless work, or do I go for the
      treatment,
      giving me a chance to rid myself of this debilitating virus, yet knowing
      the
      treatment is no fun ride?

      Yes, I'm scared to death of treatment. I haved talked to many many
      heppers
      over the years, both in person and online, and know pretty much all the
      sides. If I do treatment, I still must work. That I think will be the
      hardest part. Can I do it?

      Doc says if I want to do treatment, and then it gets too much for me, I
      can
      stop and wait for something else because I do have some time. That at
      least
      is an option "out". I like having options.

      I'm so very tired of feeling crummy every day, of not doing things I
      could
      be doing. For someone who used to press 150 lbs 3 times a week and
      jazzercize when she discovered she had hep 10 years ago, today I'm in
      pretty
      sad shape.

      Marty, give your wife a big hug for me. Does she know you're on the
      list? I
      think we would all like to congratulate her. She's a hep hero as far as
      I'm
      concerned!

      Yall's comments are appreciated. I'm scared of treatment cause I know it

      will be hard to continue working with it, and I'm scared not to do
      treatment
      cause it's already hard to work everyday feeling so icky. Damned if ya
      do
      and damned if ya don't. Thanks for listening :)

      alley/Patricia
      ICQ 12631861
      alleypat@...
      http://www.flash.net/~alleypat


      Dear AlleyPat:
      Thank you for your nice comments. My wife is not on the list, but, I
      do forward her some of the information. If you really want to reach her,
      she uses a slightly different E-mail address of:
      byteme1@..., and her name is Debbie.
      Initially she was involved, but, like many, she quickly became over
      whelmed and did not want to focus on many issues. So, I acted as a
      buffer, and only forwarded her some of the items, in a digest form. But,
      if you want to get how she, as the person who had the virus, felt, only
      she can tell you.
      During her therapy, she was able to work full time, and under
      hellish conditions. She's teaches elementary school in an "inner city"
      school. The year has been really tough, not because of the kids, but
      because of the inept principal, and a school district that does not care
      about these kids, because they believe that can float on previous
      merits. Maybe, some of this was good while she was undergoing therapy,
      because, she had an additional avenue to funnel some of her anger from
      the disease and her work, (not the kids).
      It also allowed her a way to forget the illness, even if for a short
      time. She did use many of her sick days, and she was fortunate in that
      she had, and could use them. While some of the sick days were directly
      related to the dragon and therapy, others are not as clear because it is
      hard to tell whether the situation in her job was causing her to feel
      more lousy, or, she would have felt that way from the virus and
      treatment alone.
      Although a provider, some of these areas are not easy to isolate,
      and I am sure they are impacting on each other. While I can explain how
      I felt as a husband, like yours, she is still my wife, and sometimes to
      keep my sanity, I had to focus on the medical aspects, which many do not
      have the opportunity to use. As a spouse, I understand what you and your
      husband may be feeling. But, I can only address it from the spouse point
      of view, and, while I have studied the effects, I do not have the
      disease, and can not truly say I understand in full.
      Maybe my wife can share some of the feelings, positive and negatives
      of someone having the disease. For my part, I can say I was, and still
      are, scared of what the future will bring. She is a responder, but,
      until the 6 months post treatment have passed, as well as probably
      several years, this will always be in the back of my mind.
      It is always easier to treat someone that you do not have a special
      relationship with, then to be close to the patient. With a patient, you
      treat the illness, and listen to the person during the time they are
      with you, and, eventually they get better, or you refer them to someone
      else. But, when it is someone you know and care about, (as was studied
      in the case of AIDs), too many emotions can create questions about the
      care.
      I do believe if you are eligible, and can tolerate it, getting
      treatment early is better then none at all. But, the hassle is you are
      playing a guessing game. These are some negatives: If you can tolerate
      the treatment, you will feel lousy during the therapy, with no
      guarantees. If you start therapy, you may not tolerate it well and have
      to stop. Even if you finish the therapy, you may not remain in
      remission. Also, several cases in the world, although a very small
      number, have had permanent side effects from the therapy, including a
      few where the treatment destroyed their nervous system. Also, you can
      have some of the problems you mentioned, such as thyroid disease, and
      other medical problems, as well as create quasi species of the disease.
      Or, you could get hit by a bus or plane, and not make it to finish
      therapy.
      But, there are many reasons to try the therapy. You may be
      successful and remain in permanent remission. If you are not treated you
      may develop cirrhosis or liver cancer that will eventually place you
      into a position where a transplant is your only alternative, and there
      are very few livers. You may stop the progression of the disease, and if
      nothing else, stay the same until a better treatment is found, or a
      cure. If nothing else, you can say you tried, and that counts for
      something.
      Don't you live in Florida? May be it would be easier if you wanted
      to talk on the phone, and that could make it easier for your, and your
      husband's questions. If I can help, let me know. Just remember you are
      not alone with all of this. Marty
    • MaryBeth_Sutter@gallup.com
      Pat, I am into my second round of combo. Three weeks down 45 to go. I worked full time during the first round (24 weeks) and am going to work through this
      Message 2 of 3 , May 8, 2000
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        Pat,

        I am into my second round of combo. Three weeks down 45 to go. I worked
        full time during the first round (24 weeks) and am going to work through
        this time also. The sides are not pleasant but they are bearable. I am
        genotype 1a and 24 weeks wasn't long enough for the treatment to work. I
        figure it is better to get this over with before I feel any worse from the
        hep so here I am trying again. Good luck making your decision!

        MaryBeth
      • alley/Patricia
        Is anyone doing treatment with inflamed liver, no fibrosis? alley/Patricia ICQ 12631861 alleypat@flash.net http://www.flash.net/~alleypat
        Message 3 of 3 , May 8, 2000
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          Is anyone doing treatment with inflamed liver, no fibrosis?
          alley/Patricia
          ICQ 12631861
          alleypat@...
          http://www.flash.net/~alleypat
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