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Hi all...with an update

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  • Tatezi
    Wow, it s been really quiet here lately...sure hope that everyone is doing well and enjoying spring. My two favorite seasons are Spring and Autumn. Spring with
    Message 1 of 27 , Apr 9, 2004
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      Wow, it's been really quiet here lately...sure hope that everyone is doing well and enjoying spring.

      My two favorite seasons are Spring and Autumn. Spring with new beginnings and Autumn to release the old to make room for the new. I love watching the trees bud and the tulips and crocuses sticking their little leaves out from our Earth Mother. I love seeing the first robin and watching the grass turning back to green. Probably the only thing I don't like about Spring is trying to decide what outer wear to put on when going outside...

      My little update.

      I'm in week 38 of pegasys and the last 6 weeks have been a little rocky. My plateletts took a nose dive but with extra calcium and taking vitamin K, I managed to pull them up to 80+ so the doctors at County have quit threatening to pull me from treatment.

      I've also become very anemic...in the course of 2 weeks I went from normal (12-16%) down to 4%. Boy is anemia a miserable thing to live with. I can't even walk up the stairs to my apartment without stopping halfway to catch my breath and let my heart rate slow down. They dropped my ribavarrin dose by 200mgs.

      And I haven't had a cigarette in 10 days. Really didn't want or plan to quit (cigarettes are my only vice in life...I think everyone deserves at least one vice). Got up one morning and decided to see how long I could go without a cigarette...went all day relatively easily. Next day I got up and decided to see if I could go all day again. That was 11 days ago. Today I'm going to try to not smoke and then it will be 11 days.

      So how are things going with you folks. It always fascinates me the ups and downs with out group...well, I guess with most support lists.

      Hope you are fine and enjoying spring...

      Blessings
      Tatezi

      [Non-text portions of this message have been removed]
    • AVansi7465@aol.com
      In a message dated 4/9/2004 10:17:04 AM Eastern Daylight Time, tatezi@sbcglobal.net writes: Wow, it s been really quiet here lately...sure hope that everyone
      Message 2 of 27 , Apr 9, 2004
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        In a message dated 4/9/2004 10:17:04 AM Eastern Daylight Time,
        tatezi@... writes:
        Wow, it's been really quiet here lately...sure hope that everyone is doing
        well and enjoying spring.

        My two favorite seasons are Spring and Autumn. Spring with new beginnings and
        Autumn to release the old to make room for the new. I love watching the trees
        bud and the tulips and crocuses sticking their little leaves out from our
        Earth Mother. I love seeing the first robin and watching the grass turning back
        to green. Probably the only thing I don't like about Spring is trying to decide
        what outer wear to put on when going outside...

        My little update.

        I'm in week 38 of pegasys and the last 6 weeks have been a little rocky. My
        plateletts took a nose dive but with extra calcium and taking vitamin K, I
        managed to pull them up to 80+ so the doctors at County have quit threatening to
        pull me from treatment.

        I've also become very anemic...in the course of 2 weeks I went from normal
        (12-16%) down to 4%. Boy is anemia a miserable thing to live with. I can't even
        walk up the stairs to my apartment without stopping halfway to catch my breath
        and let my heart rate slow down. They dropped my ribavarrin dose by 200mgs.

        And I haven't had a cigarette in 10 days. Really didn't want or plan to quit
        (cigarettes are my only vice in life...I think everyone deserves at least one
        vice). Got up one morning and decided to see how long I could go without a
        cigarette...went all day relatively easily. Next day I got up and decided to see
        if I could go all day again. That was 11 days ago. Today I'm going to try to
        not smoke and then it will be 11 days.

        So how are things going with you folks. It always fascinates me the ups and
        downs with out group...well, I guess with most support lists.

        Hope you are fine and enjoying spring...

        Blessings
        Tatezi
        Dear Tat,

        We've been enjoying Spring, too. The veggies are planted the flowers are
        blooming and the daffodils are nodding there heads. Today I am baking sweet
        potato muffins for the breakfast following Sunrise Service.

        Well, it sounds like you're having a touch and go time. Did anybody suggest
        an Iron tablet to you? I don't and didn't take a lot of them, but they do
        help. They finally pulled me from treatment because of the anemia. I just
        couldn't get a RBC count that was sustainable. Is treatment keeping you from your
        new position?

        Congratulations on your 11th day as a non-smoker. I'M VERY PROUD OF
        YOU!!!!!!! Wish I could say the same. Smoking is my one vice, too. Oddly enough, I
        started smoking for health reasons. a. we had an employee who had had T. B.
        and smoking kills the rhyno virus. So someone smoked at least one cigarette a
        day to keep the virus load down.b. I also had a very keen sense of smell. We
        sold farm chemicals (much to my dismay) and smoking kept me from puking at the
        smell of them. Dyazinon stinks........ Unfortunately, I never quit.

        Take care,
        Anne


        [Non-text portions of this message have been removed]
      • Tatezi
        Are you in cherry blossom season? You are in Virginia as I recall. I ve always said that some year I d go visit my cousin in Alexandria during cherry blossom
        Message 3 of 27 , Apr 9, 2004
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          Are you in cherry blossom season? You are in Virginia as I recall. I've always said that some year I'd go visit my cousin in Alexandria during cherry blossom season.

          Sweet potato muffins...sounds absolutely delicious. My mouth is watering at the thought of them.

          I've not done any iron...I going to see what happens by dropping that extra ribavarinn once a day. I'm sure I will know if that is working because I've discovered anemia to be almost debilitating.

          Yeah, the smoking thing...it just sorta happened. Maybe it was the effects of the anemia I was beginning to feel that made me decide not to smoke that first day. I still don't say I've quit because in my mind I will probably always be a smoker. But I'm not smoking today.

          The spokesperson stuff for Pegasys is not a job...I'm not paid to do it and will stay at my wonderful grassroots, not-for-profit organization. Even if it were a paying job, I would not leave my organization. It's not often you get a job where you are paid to fight for the social causes you already fight for free.

          Enjoy your weekend and don't forget I'm still drooling over sweet potato muffins.

          Tatezi

          We've been enjoying Spring, too. The veggies are planted the flowers are
          blooming and the daffodils are nodding there heads. Today I am baking sweet potato muffins for the breakfast following Sunrise Service. ... Did anybody suggest an Iron tablet to you? ... but they do help. ... Is treatment keeping you from your new position?


          [Non-text portions of this message have been removed]
        • Carol
          Hi Tatezi Congrats on the non smoking.....it s such a struggle and one I haven t won yet. I think it s wise to not take any iron....I really am hoping by
          Message 4 of 27 , Apr 9, 2004
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            Hi Tatezi

            Congrats on the non smoking.....it's such a struggle and one I haven't won yet. I think it's wise to not take any iron....I really am hoping by dropping a riba pill that you'll feel better. I haven't been keeping up with my emails so I haven't read yet what's going on but I gather from your answer that you're feeling really tired. I know you monitor your thyroid but have you done that lately? Praying for ya girlfriend, so hang in there....you're my inspiration....meow.
            Hugggggs
            Carol
            ----- Original Message -----
            From: Tatezi
            To: Hep
            Sent: Friday, April 09, 2004 2:14 PM
            Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


            Are you in cherry blossom season? You are in Virginia as I recall. I've always said that some year I'd go visit my cousin in Alexandria during cherry blossom season.

            Sweet potato muffins...sounds absolutely delicious. My mouth is watering at the thought of them.

            I've not done any iron...I going to see what happens by dropping that extra ribavarinn once a day. I'm sure I will know if that is working because I've discovered anemia to be almost debilitating.

            Yeah, the smoking thing...it just sorta happened. Maybe it was the effects of the anemia I was beginning to feel that made me decide not to smoke that first day. I still don't say I've quit because in my mind I will probably always be a smoker. But I'm not smoking today.

            The spokesperson stuff for Pegasys is not a job...I'm not paid to do it and will stay at my wonderful grassroots, not-for-profit organization. Even if it were a paying job, I would not leave my organization. It's not often you get a job where you are paid to fight for the social causes you already fight for free.

            Enjoy your weekend and don't forget I'm still drooling over sweet potato muffins.

            Tatezi

            We've been enjoying Spring, too. The veggies are planted the flowers are
            blooming and the daffodils are nodding there heads. Today I am baking sweet potato muffins for the breakfast following Sunrise Service. ... Did anybody suggest an Iron tablet to you? ... but they do help. ... Is treatment keeping you from your new position?


            [Non-text portions of this message have been removed]



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            [Non-text portions of this message have been removed]
          • AVansi7465@aol.com
            In a message dated 4/9/2004 5:15:24 PM Eastern Daylight Time, tatezi@sbcglobal.net writes: Are you in cherry blossom season? You are in Virginia as I recall.
            Message 5 of 27 , Apr 9, 2004
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              In a message dated 4/9/2004 5:15:24 PM Eastern Daylight Time,
              tatezi@... writes:
              Are you in cherry blossom season? You are in Virginia as I recall. I've
              always said that some year I'd go visit my cousin in Alexandria during cherry
              blossom season.
              We're a little too far South, but we do have an ornamental weeping cherry.
              It's blooms are about gone. It really is beautiful.

              I'm praying that the lesser dose of Ribavirin will do the trick for you.
              Anemia wasn't the worst of my problems on treatment, but it was the symptom that
              I carried with me the longest. Miserable is accurate. I certainly slowed
              down on the cigs then, but can't seem to drop them completely. As many people as
              I see walking around with oxygen tanks, you'd think I'd take heed.

              I don't know where I got the idea that being spokesperson for Pegasys was
              going to be a paying job. Nevertheless, it's still wonderful that your helping
              to keep everyone informed. I don't know what my treatment options are going to
              be, but I'm not looking forward to any of it. I'll have to do some serious
              thinking before I jump in. My viral load has decreased, since the last check,
              thank God. So I may just keep on keeping on. We'll see.

              At any rate, get lots of rest and take care. We need you.

              Anne


              [Non-text portions of this message have been removed]
            • Tatezi
              Hi Carol... My TSH was high a couple months ago and we upped my synthroid to 225mcg. My TSH is due to be checked again in a week...but this is anemia without a
              Message 6 of 27 , Apr 9, 2004
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                Hi Carol...

                My TSH was high a couple months ago and we upped my synthroid to 225mcg. My TSH is due to be checked again in a week...but this is anemia without a doubt. Actually I had planned to have him check my thyroid when I went in last week (I've been going in twice a month the last 6 weeks because they've been keeping an eye on my plateletts) because that is the way I felt. But my hemoglobin is at 4% and normal is 12%-16%...I am most definitely very anemic. So of course I did my research and wow, the symptoms of anemia and high TSH are pretty much the same. So I'm going to hope the drop in the ribavarinn will help...I only have 10 more weeks to get through.

                And I doubt I will actually quit smoking...I think you have to think of yourself as a non smoker and I've never been able to do that. I like smoking...cigarettes have been my constant companion for 38 years. The longest I've ever gone with not smoking is 3 months. And ofcourse when I'm able to breathe again....

                ----- Original Message -----
                From: Carol
                To: GIWorld-Hepatitis@yahoogroups.com
                Sent: Friday, April 09, 2004 4:42 PM
                Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


                Hi Tatezi

                Congrats on the non smoking.....it's such a struggle and one I haven't won yet. I think it's wise to not take any iron....I really am hoping by dropping a riba pill that you'll feel better. I haven't been keeping up with my emails so I haven't read yet what's going on but I gather from your answer that you're feeling really tired. I know you monitor your thyroid but have you done that lately? Praying for ya girlfriend, so hang in there....you're my inspiration....meow.
                Hugggggs
                Carol


                [Non-text portions of this message have been removed]
              • Tatezi
                Thanks, Anne.... If this anemia doesn t get resolved and I end up having to go off treatment, at least this time I made it to undetectable at the half way
                Message 7 of 27 , Apr 9, 2004
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                  Thanks, Anne....

                  If this anemia doesn't get resolved and I end up having to go off treatment, at least this time I made it to undetectable at the half way point so still might be able to sustain the response. And if not...I 'll ask for a biopsy and depending on that, will determine if I will try again.

                  Tatezi
                  ----- Original Message -----
                  From: AVansi7465@...
                  To: GIWorld-Hepatitis@yahoogroups.com
                  Sent: Friday, April 09, 2004 5:21 PM
                  Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


                  In a message dated 4/9/2004 5:15:24 PM Eastern Daylight Time,
                  tatezi@... writes:
                  Are you in cherry blossom season? You are in Virginia as I recall. I've
                  always said that some year I'd go visit my cousin in Alexandria during cherry
                  blossom season.
                  We're a little too far South, but we do have an ornamental weeping cherry.
                  It's blooms are about gone. It really is beautiful.

                  I'm praying that the lesser dose of Ribavirin will do the trick for you.
                  Anemia wasn't the worst of my problems on treatment, but it was the symptom that
                  I carried with me the longest. Miserable is accurate. I certainly slowed
                  down on the cigs then, but can't seem to drop them completely. As many people as
                  I see walking around with oxygen tanks, you'd think I'd take heed.

                  I don't know where I got the idea that being spokesperson for Pegasys was
                  going to be a paying job. Nevertheless, it's still wonderful that your helping
                  to keep everyone informed. I don't know what my treatment options are going to
                  be, but I'm not looking forward to any of it. I'll have to do some serious
                  thinking before I jump in. My viral load has decreased, since the last check,
                  thank God. So I may just keep on keeping on. We'll see.

                  At any rate, get lots of rest and take care. We need you.

                  Anne


                  [Non-text portions of this message have been removed]



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                  [Non-text portions of this message have been removed]
                • Carol
                  Well Tatezi....please rest as much as possible until you can get back to normal....I know it can t be easy with work and home life but dust bunnies can be our
                  Message 8 of 27 , Apr 9, 2004
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                    Well Tatezi....please rest as much as possible until you can get back to normal....I know it can't be easy with work and home life but dust bunnies can be our friends too ;-) At least it works for me LOL.
                    Huggggs
                    Carol
                    ----- Original Message -----
                    From: Tatezi
                    To: GIWorld-Hepatitis@yahoogroups.com
                    Sent: Friday, April 09, 2004 5:21 PM
                    Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


                    Hi Carol...

                    My TSH was high a couple months ago and we upped my synthroid to 225mcg. My TSH is due to be checked again in a week...but this is anemia without a doubt. Actually I had planned to have him check my thyroid when I went in last week (I've been going in twice a month the last 6 weeks because they've been keeping an eye on my plateletts) because that is the way I felt. But my hemoglobin is at 4% and normal is 12%-16%...I am most definitely very anemic. So of course I did my research and wow, the symptoms of anemia and high TSH are pretty much the same. So I'm going to hope the drop in the ribavarinn will help...I only have 10 more weeks to get through.

                    And I doubt I will actually quit smoking...I think you have to think of yourself as a non smoker and I've never been able to do that. I like smoking...cigarettes have been my constant companion for 38 years. The longest I've ever gone with not smoking is 3 months. And ofcourse when I'm able to breathe again....

                    ----- Original Message -----
                    From: Carol
                    To: GIWorld-Hepatitis@yahoogroups.com
                    Sent: Friday, April 09, 2004 4:42 PM
                    Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


                    Hi Tatezi

                    Congrats on the non smoking.....it's such a struggle and one I haven't won yet. I think it's wise to not take any iron....I really am hoping by dropping a riba pill that you'll feel better. I haven't been keeping up with my emails so I haven't read yet what's going on but I gather from your answer that you're feeling really tired. I know you monitor your thyroid but have you done that lately? Praying for ya girlfriend, so hang in there....you're my inspiration....meow.
                    Hugggggs
                    Carol


                    [Non-text portions of this message have been removed]



                    Welcome to GIHepWorld

                    Post message: GIWorld-Hepatitis@yahoogroups.com
                    Subscribe: GIWorld-Hepatitis-subscribe@yahoogroups.com
                    Unsubscribe: GIWorld-Hepatitis-unsubscribe@yahoogroups.com
                    List owner: GIWorld-Hepatitis-owner@yahoogroups.com
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                    ADVERTISEMENT





                    ------------------------------------------------------------------------------
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                    a.. To visit your group on the web, go to:
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                    [Non-text portions of this message have been removed]
                  • claudine intexas
                    Tatezi! Did I miss something? Let me get this straight - your hemoglobin is ** 4% **??!! Any person who presented to a hospital/ER with a hemoglobin that low
                    Message 9 of 27 , Apr 9, 2004
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                      Tatezi!

                      Did I miss something? Let me get this straight - your hemoglobin is
                      ** 4% **??!! Any person who presented to a hospital/ER with a
                      hemoglobin that low would be receiving a blood transfusion! I can't
                      believe they have let it get this low. You should be on Procrit or
                      Epogen. Dropping one riba capsule (if I'm reading this right) will
                      probably not make the difference that needs to be made as fast as it
                      needs to be made. With a Hgb of 4 I'm surprised you can drag yourself
                      out of bed and up to a computer to type anything. If you get to
                      feeling worse, please go to an ER. An Hgb of only 4 is dangerous.

                      Claudine

                      --- Tatezi <tatezi@...> wrote:
                      > Hi Carol...
                      >
                      > My TSH was high a couple months ago and we upped my synthroid to
                      > 225mcg. My TSH is due to be checked again in a week...but this is
                      > anemia without a doubt. Actually I had planned to have him check my
                      > thyroid when I went in last week (I've been going in twice a month
                      > the last 6 weeks because they've been keeping an eye on my
                      > plateletts) because that is the way I felt. But my hemoglobin is at
                      > 4% and normal is 12%-16%...I am most definitely very anemic. So of
                      > course I did my research and wow, the symptoms of anemia and high
                      > TSH are pretty much the same. So I'm going to hope the drop in the
                      > ribavarinn will help...I only have 10 more weeks to get through.
                      >
                      > And I doubt I will actually quit smoking...I think you have to
                      > think of yourself as a non smoker and I've never been able to do
                      > that. I like smoking...cigarettes have been my constant companion
                      > for 38 years. The longest I've ever gone with not smoking is 3
                      > months. And ofcourse when I'm able to breathe again....
                      >
                      > ----- Original Message -----
                      > From: Carol
                      > To: GIWorld-Hepatitis@yahoogroups.com
                      > Sent: Friday, April 09, 2004 4:42 PM
                      > Subject: Re: [GIWorld-Hepatitis] Hi all...with an update
                      >
                      >
                      > Hi Tatezi
                      >
                      > Congrats on the non smoking.....it's such a struggle and one I
                      > haven't won yet. I think it's wise to not take any iron....I
                      > really am hoping by dropping a riba pill that you'll feel better.
                      > I haven't been keeping up with my emails so I haven't read yet
                      > what's going on but I gather from your answer that you're feeling
                      > really tired. I know you monitor your thyroid but have you done
                      > that lately? Praying for ya girlfriend, so hang in there....you're
                      > my inspiration....meow.
                      > Hugggggs
                      > Carol
                      >
                      >
                      > [Non-text portions of this message have been removed]
                      >
                      >


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                    • AVansi7465@aol.com
                      In a message dated 4/9/2004 10:16:14 PM Eastern Daylight Time, csean@shaw.ca writes: Well Tatezi....please rest as much as possible until you can get back to
                      Message 10 of 27 , Apr 10, 2004
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                        In a message dated 4/9/2004 10:16:14 PM Eastern Daylight Time, csean@...
                        writes:
                        Well Tatezi....please rest as much as possible until you can get back to
                        normal....I know it can't be easy with work and home life but dust bunnies can be
                        our friends too ;-) At least it works for me LOL.
                        Dust bunnies have been my friends for over 48 years................and will
                        continue to be. I'm rather fond have cat hair, too.........:-)


                        [Non-text portions of this message have been removed]
                      • Tatezi
                        Claudine.... I m in pretty awful shape...I will admit that. Don t like admitting it, but sometimes I have to be realistic. Been sleeping a whole lot (we were
                        Message 11 of 27 , Apr 10, 2004
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                          Claudine....

                          I'm in pretty awful shape...I will admit that. Don't like admitting it, but sometimes I have to be realistic. Been sleeping a whole lot (we were off yesterday). The intern I saw this week at County actually gave me his pager number and said if I felt worse to page him and get to the emergency room. So I knew it was serious....county interns do not give out their pager numbers. But of course they wouldn't tell a mere mortal anything about what was happening to me. That's why I posted my update...I needed you guys and your knowledge.

                          And you are right about the dragging myself places. I live on the second floor and after a few steps I have to sit down to not only catch my breath but to slow down my heartrate. I've been leaving an half hour early for work because it's the same thing with the stairs on the elevated. This has been going on for a month now...and they've been running weekly CBCs tracking my platelettes...guess they didn't pay attention to anything else. I looked back to my last lab and my hemoglobin was at 6...surely that would have rung some warning bells to a real doctor.

                          I was unaware of the danger I was in until I came home from County and did some research...damn, you can die from severe anemia. My skin has no color to it...my face is actually a pasty white. And once I get up and move to a different location...I stay there as long as possible.

                          A friend drove 100 miles to come to the city to take me out to do my errands yesterday...apparently he knew the danger I was in. But those interns at County should have informed me of what to avoid...they never mentioned that if I overextended myself I could have a heart attack. All they said was that if it gets worse to page them and go to the emergency room. They didn't even warn me to watch for chest pains.

                          Why they didn't prescribe procrit or epogen...I don't know. But if it does get worse, I will go to a hospital....even though I don't have insurance, I will go to a real hospital because I sure would not trust County with a blood transfusion...especially now that I know how dangerous this is.

                          My doc (my doc of years and years who has been working with me all this time of no insurance) was on vacation last week...I did call him to discuss this and ask him to prescribe procrit or something for me. Darn, he's always there for me in a crisis and this time he's on vacation.

                          So this is what I'm doing...maybe you can tell me if I can hold off until Monday when my doc is back. With my friend to drive me around yesterday I got my errands done. I had a major pigeon rescue this morning so went to breakfast with my friends who helped in the rescue. I don't plan on leaving the house all weekend. The only chores I will do are laundry...no cleaning house. I try to stay in one location...but even sitting here typing I am breathless. They gave me non-steroid inhalers to help with the breathlessness. Have to admit, I'm not doing them as often as they prescribed...the back of my throat is so sore and my voice is gone...man, they are nasty. I've taken the cardboard from a roll of paper towels, lined it with foil on the inside and taped the inhaler to the end so hopefully the air will help dilute what I'm inhaling (us old hippies still remember little tricks like that <g>). And other than staying still as much as possible that's my game plan until I can talk to my real doc on Monday.

                          Anything else I should avoid to make it through the weekend?

                          Tatezi
                          ----- Original Message -----
                          From: claudine intexas
                          To: GIWorld-Hepatitis@yahoogroups.com
                          Sent: Friday, April 09, 2004 11:21 PM
                          Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


                          Tatezi!

                          Did I miss something? Let me get this straight - your hemoglobin is
                          ** 4% **??!! Any person who presented to a hospital/ER with a
                          hemoglobin that low would be receiving a blood transfusion! I can't
                          believe they have let it get this low. You should be on Procrit or
                          Epogen. Dropping one riba capsule (if I'm reading this right) will
                          probably not make the difference that needs to be made as fast as it
                          needs to be made. With a Hgb of 4 I'm surprised you can drag yourself
                          out of bed and up to a computer to type anything. If you get to
                          feeling worse, please go to an ER. An Hgb of only 4 is dangerous.

                          Claudine



                          [Non-text portions of this message have been removed]
                        • AVansi7465@aol.com
                          In a message dated 4/10/2004 12:15:29 PM Eastern Daylight Time, tatezi@sbcglobal.net writes: I m in pretty awful shape...I will admit that. Don t like
                          Message 12 of 27 , Apr 10, 2004
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                            In a message dated 4/10/2004 12:15:29 PM Eastern Daylight Time,
                            tatezi@... writes:
                            I'm in pretty awful shape...I will admit that. Don't like admitting it, but
                            sometimes I have to be realistic. Been sleeping a whole lot (we were off
                            yesterday). The intern I saw this week at County actually gave me his pager number
                            and said if I felt worse to page him and get to the emergency room. So I knew
                            it was serious....county interns do not give out their pager numbers. But of
                            course they wouldn't tell a mere mortal anything about what was happening to me.
                            That's why I posted my update...I needed you guys and your knowledge.
                            Yea gads and little fishes, Tat, If they gave you an inhaler, then they
                            should have hospitalized you then.......and all they told you to do was lower your
                            ribavirin level.......
                            Well, since it's Sat. I guess you can wait until Monday, but for heaven's
                            sake stay put, do nothing, and keep the phone in your hand. Not to sound
                            frightening, but if I were there you'd be in the hospital. I forgot about your
                            thyroid problem or I wouldn't have suggested the iron.
                            Please be careful and call county intern on pager if
                            necessary...........don't hesitate........
                            and that's a friendly order.
                            Anne


                            [Non-text portions of this message have been removed]
                          • Carol
                            Tatezi, I am worried about your rapid heartbeat too.....I had that when I tried the old combo....in fact, I still have it and am going to a cardiologist after
                            Message 13 of 27 , Apr 10, 2004
                            • 0 Attachment
                              Tatezi, I am worried about your rapid heartbeat too.....I had that when I tried the old combo....in fact, I still have it and am going to a cardiologist after having an ECG. That's one of the many reasons I quit the treatment....my heart was racing so fast I couldn't take my pulse and then I started getting chest pains. I think it's from the riba rather than the interferon....which could be why they told you to drop a pill. But that's not acceptable in your case. Try to sleep as much as you can this weekend and go to the hospital immediately if you get chest pains or your heart is racing. I don't know the numbers like Claudine does but you're way too low for hemoglobin. I'll feel better knowing you can get ahold of your doc on Monday....please, do nothing physical ok?

                              Huggggs
                              Carol
                              ----- Original Message -----
                              From: AVansi7465@...
                              To: GIWorld-Hepatitis@yahoogroups.com
                              Sent: Saturday, April 10, 2004 4:56 PM
                              Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


                              In a message dated 4/10/2004 12:15:29 PM Eastern Daylight Time,
                              tatezi@... writes:
                              I'm in pretty awful shape...I will admit that. Don't like admitting it, but
                              sometimes I have to be realistic. Been sleeping a whole lot (we were off
                              yesterday). The intern I saw this week at County actually gave me his pager number
                              and said if I felt worse to page him and get to the emergency room. So I knew
                              it was serious....county interns do not give out their pager numbers. But of
                              course they wouldn't tell a mere mortal anything about what was happening to me.
                              That's why I posted my update...I needed you guys and your knowledge.
                              Yea gads and little fishes, Tat, If they gave you an inhaler, then they
                              should have hospitalized you then.......and all they told you to do was lower your
                              ribavirin level.......
                              Well, since it's Sat. I guess you can wait until Monday, but for heaven's
                              sake stay put, do nothing, and keep the phone in your hand. Not to sound
                              frightening, but if I were there you'd be in the hospital. I forgot about your
                              thyroid problem or I wouldn't have suggested the iron.
                              Please be careful and call county intern on pager if
                              necessary...........don't hesitate........
                              and that's a friendly order.
                              Anne


                              [Non-text portions of this message have been removed]



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                              [Non-text portions of this message have been removed]
                            • claudine intexas
                              Well, I finally got your ORIGINAL post. Late. I m wondering if that 4% hgb could be a lab error. It does sound like (from your symptoms) that anemia could be a
                              Message 14 of 27 , Apr 10, 2004
                              • 0 Attachment
                                Well, I finally got your ORIGINAL post. Late.

                                I'm wondering if that 4% hgb could be a lab error. It does sound like
                                (from your symptoms) that anemia could be a problem, but that is a
                                HUGE drop in only two weeks, and especially for it to occur this late
                                into treatment is odd. That is the sort of thing that usually happens
                                in the first 4 weeks. I hope it is a mistake since an hgb of 4 is
                                very bad.

                                It's a very good thing you're not smoking. Your body must have been
                                telling you something. You really don't have any O2 to waste on cigs
                                right now. Hopefully you will decide to make it a permanent change. I
                                smoked for many years and quitting was the hardest thing I've ever
                                done. Once before I quit, then thought I could just smoke the
                                occasional one. Nope, it was right back to a pack a day immediately.
                                Good luck, and keep us posted.

                                Claudine

                                --- Tatezi <tatezi@...> wrote:
                                >
                                > My little update.
                                >
                                > I'm in week 38 of pegasys and the last 6 weeks have been a little
                                > rocky. My plateletts took a nose dive but with extra calcium and
                                > taking vitamin K, I managed to pull them up to 80+ so the doctors
                                > at County have quit threatening to pull me from treatment.
                                >
                                > I've also become very anemic...in the course of 2 weeks I went from
                                > normal (12-16%) down to 4%. Boy is anemia a miserable thing to live
                                > with. I can't even walk up the stairs to my apartment without
                                > stopping halfway to catch my breath and let my heart rate slow
                                > down. They dropped my ribavarrin dose by 200mgs.
                                >
                                > And I haven't had a cigarette in 10 days. Really didn't want or
                                > plan to quit (cigarettes are my only vice in life...I think
                                ...

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                              • claudine intexas
                                ... While at this point a little iron probably wouldn t hurt, it really won t help much since this is not iron-deficency anemia, it s hemolytic anemia - red
                                Message 15 of 27 , Apr 10, 2004
                                • 0 Attachment
                                  --- Tatezi <tatezi@...> wrote:

                                  > I've not done any iron...I going to see what happens by dropping
                                  > that extra ribavarinn once a day. I'm sure I will know if that is
                                  > working because I've discovered anemia to be almost debilitating.

                                  While at this point a little iron probably wouldn't hurt, it really
                                  won't help much since this is not iron-deficency anemia, it's
                                  hemolytic anemia - red cells being destroyed and an inability to
                                  replace them. Factors that can help in the production of blood cells
                                  may help some. (Epogen or Procrit would be the best!) Lots of good
                                  quality protein (I'd shoot for at least 80 gm per day), extra
                                  B-complex vitamins with C and E, and water. You might also try some
                                  liquid chlorophyll which is essentially plant blood, and has just
                                  about every single ingredient in it which is necessary for your body
                                  to efficiently build up it's red cells again. It does contain some
                                  iron, but not enough to be harmful, and maybe just enough to be
                                  helpful. Also drink lots of water, and don't let anyone put off
                                  checking your thyroid since the thyroid hormones seem to affect
                                  EVERYTHING in your body in one way or another.

                                  C

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                                • claudine intexas
                                  ... I ... Yes, that should have rung LOTS of bells! You must not have a real doctor! ... Yes, you can. This is serious. All they said was that if it gets worse
                                  Message 16 of 27 , Apr 10, 2004
                                  • 0 Attachment
                                    --- Tatezi <tatezi@...> wrote:
                                    I
                                    > looked back to my last lab and my hemoglobin was at 6...surely that
                                    > would have rung some warning bells to a real doctor.
                                    Yes, that should have rung LOTS of bells! You must not have a real
                                    doctor!
                                    >
                                    > I was unaware of the danger I was in until I came home from County
                                    > and did some research...damn, you can die from severe anemia.

                                    Yes, you can. This is serious.

                                    All they said was that if it gets worse to
                                    > page them and go to the emergency room. They didn't even warn me to
                                    > watch for chest pains.

                                    You have even the slightest twinge GO to the ER ASAP. If your pulse
                                    gets over 120 I would go if I were you.
                                    >
                                    > Why they didn't prescribe procrit or epogen...I don't know.

                                    Well, #1 is probably that these are very expensive drugs. However,
                                    all recent studies say to prescribe one of them before resorting to
                                    stopping ribavirin completely. #2 is that it doesn't sound like you
                                    have a real doctor! Maybe he doesn't know about those drugs. Really.

                                    I think I'd page that doctor and ask him to prescribe either Epogen
                                    or Procrit ASAP. Your other doctor could prescribe it but then who
                                    will have to pay for it?
                                    >
                                    > Anything else I should avoid to make it through the weekend?
                                    >
                                    Everything that is not necessary! Eat, sleep, rest. Or go to the ER.

                                    Keep us posted.
                                    Claudine

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                                  • claudine intexas
                                    ... The elevated pulse is a side effect of anemia. The heart is compensating, having to work harder to move what little oxygen is in the blood supply around
                                    Message 17 of 27 , Apr 10, 2004
                                    • 0 Attachment
                                      --- Carol <csean@...> wrote:
                                      > Tatezi, I am worried about your rapid heartbeat too.....I had that
                                      > when I tried the old combo....in fact, I still have it and am going
                                      > to a cardiologist after having an ECG. That's one of the many
                                      > reasons I quit the treatment....my heart was racing so fast I
                                      > couldn't take my pulse and then I started getting chest pains. I
                                      > think it's from the riba rather than the interferon...

                                      The elevated pulse is a side effect of anemia. The heart is
                                      compensating, having to work harder to move what little oxygen is in
                                      the blood supply around the body. It's NOT good.

                                      And just for the record, I agree with Anne. I think you really should
                                      be in a hospital.

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                                    • Carol
                                      Hi Claudine....I honestly don t know what we d do without you. I always know that if you say something, it s the right thing to do....you are wiser than my
                                      Message 18 of 27 , Apr 10, 2004
                                      • 0 Attachment
                                        Hi Claudine....I honestly don't know what we'd do without you. I always know that if you say something, it's the right thing to do....you are wiser than my doc....thank God you're on this forum. Happy Easter to you and all of you....waving towards to Holland at Willem.....don't let Tats know about that ;-)

                                        Carol
                                        ----- Original Message -----
                                        From: claudine intexas
                                        To: GIWorld-Hepatitis@yahoogroups.com
                                        Sent: Saturday, April 10, 2004 8:39 PM
                                        Subject: Re: [GIWorld-Hepatitis] Hi all...with an update



                                        --- Tatezi <tatezi@...> wrote:

                                        > I've not done any iron...I going to see what happens by dropping
                                        > that extra ribavarinn once a day. I'm sure I will know if that is
                                        > working because I've discovered anemia to be almost debilitating.

                                        While at this point a little iron probably wouldn't hurt, it really
                                        won't help much since this is not iron-deficency anemia, it's
                                        hemolytic anemia - red cells being destroyed and an inability to
                                        replace them. Factors that can help in the production of blood cells
                                        may help some. (Epogen or Procrit would be the best!) Lots of good
                                        quality protein (I'd shoot for at least 80 gm per day), extra
                                        B-complex vitamins with C and E, and water. You might also try some
                                        liquid chlorophyll which is essentially plant blood, and has just
                                        about every single ingredient in it which is necessary for your body
                                        to efficiently build up it's red cells again. It does contain some
                                        iron, but not enough to be harmful, and maybe just enough to be
                                        helpful. Also drink lots of water, and don't let anyone put off
                                        checking your thyroid since the thyroid hormones seem to affect
                                        EVERYTHING in your body in one way or another.

                                        C

                                        __________________________________
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                                        [Non-text portions of this message have been removed]
                                      • Mary Johnson
                                        After doing the treatment for 14 weeks, I took a break because I had lost the hearing in one ear and I wanted to see if it had come back. Besides, I had
                                        Message 19 of 27 , Apr 11, 2004
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                                          After doing the treatment for 14 weeks, I took a break because I had lost
                                          the hearing in one ear and I wanted to see if it had come back. Besides, I
                                          had cleared the virus and even though my doc and everyone else said that it
                                          would almost certainly return, I wanted to explore that "almost".
                                          Well, my hearing didn't return, but the virus did. When I went off the
                                          treatment, my enzymes were completely normal. Now, 2 months later, my ALT is
                                          267, AST 136 and even the Gamma GT is elevated.
                                          So, I'm going back on the treatment but I am planning on not working this
                                          time as I don't think I can face that nightmare again.Does anyone know how
                                          long you can have high ALT's before real damage is done? This is the highest
                                          they have ever been for me.



                                          [Non-text portions of this message have been removed]
                                        • land
                                          Hi.Claudine and consorte will give you some more info all I can say that when I failed treatment twice my ALT and AST went in a very short time skyhigh,after
                                          Message 20 of 27 , Apr 11, 2004
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                                            Hi.Claudine and consorte will give you some more info all I can say that when I failed treatment twice my ALT and AST went in a very short time skyhigh,after that it settled to much lower figures,don.t remember howmuch,I think it was around 50,ALT.The Doc. told me that was always happening after somebody stopped treatment ,also the virus came soaring back.It almost seems that the virus wants to make up for the time it was being under siege. I think the time when yr enzyme levels were really high is too short to do any real damage as in your case.Willem.
                                            ----- Original Message -----
                                            From: Mary Johnson
                                            To: GIWorld-Hepatitis@yahoogroups.com
                                            Sent: Sunday, April 11, 2004 6:26 PM
                                            Subject: [GIWorld-Hepatitis] Question about high ALT levels


                                            After doing the treatment for 14 weeks, I took a break because I had lost
                                            the hearing in one ear and I wanted to see if it had come back. Besides, I
                                            had cleared the virus and even though my doc and everyone else said that it
                                            would almost certainly return, I wanted to explore that "almost".
                                            Well, my hearing didn't return, but the virus did. When I went off the
                                            treatment, my enzymes were completely normal. Now, 2 months later, my ALT is
                                            267, AST 136 and even the Gamma GT is elevated.
                                            So, I'm going back on the treatment but I am planning on not working this
                                            time as I don't think I can face that nightmare again.Does anyone know how
                                            long you can have high ALT's before real damage is done? This is the highest
                                            they have ever been for me.



                                            [Non-text portions of this message have been removed]



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                                            [Non-text portions of this message have been removed]
                                          • AVansi7465@aol.com
                                            In a message dated 4/11/2004 1:19:31 PM Eastern Daylight Time, lands142@planet.nl writes: Does anyone know how long you can have high ALT s before real damage
                                            Message 21 of 27 , Apr 11, 2004
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                                              In a message dated 4/11/2004 1:19:31 PM Eastern Daylight Time,
                                              lands142@... writes:
                                              Does anyone know how
                                              long you can have high ALT's before real damage is done? This is the highest
                                              they have ever been for me.
                                              Since I aquired this disease through an intravenous shot of nothing but HCV,
                                              my situation is somewhat different than yours. That occurred in 1987. Nobody
                                              was terribly surprised that my ALT and AST's soared. Since there was
                                              zip,zilch, nada for treatment at that point, there wasn't much I could do. I had a
                                              liver biopsy in 1995. It really wasn't too bad....minor portal damage...no
                                              cirrhosis....bear in mind that I wasn't a heavy drinker. Over the years my lab
                                              results have varied. Although I was a non-responder to treatment. The
                                              rebetrol ended up doing more damage than anything tried prior to. And yes, I did the
                                              hemolytic anemia run, too.......not fun. At any rate, I had a liver biopsy
                                              done on the 26th of March, don't have the results, yet, but the ALT's and AST's
                                              have been in the normal range for quite some time. Maybe it's all those
                                              sweet potato muffins :-). I don't know if this really answers your question, but
                                              remember this is a blood borne pathologen, so while your liver is the main
                                              filter, it isn't the only one.
                                              Hope I helped, some.
                                              Anne


                                              [Non-text portions of this message have been removed]
                                            • Mzgee1@aol.com
                                              HI Tat...I was pulled from treatment several times during my 13 months due to anemia. Eventually, I was managed fairly well with Procrit 40,000 units weekly.
                                              Message 22 of 27 , Apr 11, 2004
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                                                HI Tat...I was pulled from treatment several times during my 13 months due to
                                                anemia. Eventually, I was managed fairly well with Procrit 40,000 units
                                                weekly. Are u on it? I remember when the anemia first hit and my counts bottomed
                                                out..OMG! I could not get out of bed. It's a terrible feeling..the
                                                shortness of breath etc. My doc also had me on Vit A, Folic Acid, Vit E. It took me
                                                8 months before I became jundectable, but I've remained that way (at least I
                                                still was at my last test last year.) I was never able to take the proper dose
                                                of Riba because of the anemia. Anemia is really nothing to fool around
                                                with...better to drop the Riba down or altogether, or even to stop treatment for a
                                                few weeks than put your body in jeopardy. Hang in there..this too shall
                                                pass! magee


                                                [Non-text portions of this message have been removed]
                                              • Tatezi
                                                I ll add my comments to this discussion. Odd s are, although of course there is no way to know for sure, that I contracted HCV in the late 60s/early 70s. My
                                                Message 23 of 27 , Apr 11, 2004
                                                • 0 Attachment
                                                  I'll add my comments to this discussion.

                                                  Odd's are, although of course there is no way to know for sure, that I contracted HCV in the late 60s/early 70s. My doctor has always monitored my LFTs because of my past and I've not had any high LFTs. When I told him I wanted tested for HCV, he bet me I didn't have because he always monitored my LFTs and kidney function. Well, I have HCV, he paid up and even though my biopsy was Grade 2, Stage 2 I have yet to have elevated LFTs.

                                                  Ofcourse, LFTs are no indication of the virus...they've proven that as time goes by. The only way to know the amount of liver damage is a biopsy and the only way to know the viral load is to do a quantitative RNA or PCR as you will often hear them refered to.

                                                  I can't imagine what happened to your hearing. I've never heard of any hearing loss due to treatment or HCV. But just in the last couple months they have been releasing study results that consistent users of vicodin (or hydrocodone, the generic) have been losing their hearing.

                                                  And it is true that when you finish treatment, if you aren't a sustained responder, your viral load returns with a venegence.

                                                  Tatezi
                                                  ----- Original Message -----
                                                  From: Mary Johnson
                                                  To: GIWorld-Hepatitis@yahoogroups.com
                                                  Sent: Sunday, April 11, 2004 11:26 AM
                                                  Subject: [GIWorld-Hepatitis] Question about high ALT levels


                                                  After doing the treatment for 14 weeks, I took a break because I had lost
                                                  the hearing in one ear and I wanted to see if it had come back. Besides, I
                                                  had cleared the virus and even though my doc and everyone else said that it
                                                  would almost certainly return, I wanted to explore that "almost".
                                                  Well, my hearing didn't return, but the virus did. When I went off the
                                                  treatment, my enzymes were completely normal. Now, 2 months later, my ALT is
                                                  267, AST 136 and even the Gamma GT is elevated.
                                                  So, I'm going back on the treatment but I am planning on not working this
                                                  time as I don't think I can face that nightmare again.Does anyone know how
                                                  long you can have high ALT's before real damage is done? This is the highest
                                                  they have ever been for me.



                                                  [Non-text portions of this message have been removed]



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                                                  [Non-text portions of this message have been removed]
                                                • Tatezi
                                                  Hi McGee... No, the interns did not prescribe procrit or epogen...this is the problem with using a county facility...the knowledge level is even lower than
                                                  Message 24 of 27 , Apr 11, 2004
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                                                    Hi McGee...

                                                    No, the interns did not prescribe procrit or epogen...this is the problem with using a county facility...the knowledge level is even lower than with MDs.

                                                    Had I known then what I now know, I would have made a fuss and demanded one or the other. I never had this problem with the last treatment and I honestly "assumed" it was my thyroid again. I am in constant battle with my thyroid when on treatment.

                                                    It is a terrible feeling...and each time I push myself to do one little thing around the house, I end up taking a couple hours nap. I feel helpless and I don't do helpless well.

                                                    If County won't do anything tomorrow, I'll go get some accupuncture. I don't know what I'm going to do about work. I'll just have to play that by ear (or breath <g>)

                                                    Tatezi



                                                    ----- Original Message -----
                                                    From: Mzgee1@...
                                                    To: GIWorld-Hepatitis@yahoogroups.com
                                                    Sent: Sunday, April 11, 2004 2:40 PM
                                                    Subject: Re: [GIWorld-Hepatitis] Hi all...with an update


                                                    HI Tat...I was pulled from treatment several times during my 13 months due to
                                                    anemia. Eventually, I was managed fairly well with Procrit 40,000 units
                                                    weekly. Are u on it? I remember when the anemia first hit and my counts bottomed
                                                    out..OMG! I could not get out of bed. It's a terrible feeling..the
                                                    shortness of breath etc. My doc also had me on Vit A, Folic Acid, Vit E. It took me
                                                    8 months before I became jundectable, but I've remained that way (at least I
                                                    still was at my last test last year.) I was never able to take the proper dose
                                                    of Riba because of the anemia. Anemia is really nothing to fool around
                                                    with...better to drop the Riba down or altogether, or even to stop treatment for a
                                                    few weeks than put your body in jeopardy. Hang in there..this too shall
                                                    pass! magee


                                                    [Non-text portions of this message have been removed]



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                                                    [Non-text portions of this message have been removed]
                                                  • claudine intexas
                                                    I wouldn t worry too much about the high LFT s. They are probably high now due to the re-infection, similar to what is seen in acute HCV. Remember, the liver
                                                    Message 25 of 27 , Apr 11, 2004
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                                                      I wouldn't worry too much about the high LFT's. They are probably
                                                      high now due to the re-infection, similar to what is seen in acute
                                                      HCV. Remember, the liver is an amazingly regenerative organ. Just get
                                                      back on treatment ASAP. Good luck!
                                                      Claudine
                                                      PS: Which interferon were you on before? Just a suggestion, but you
                                                      might consider doing the other brand this time.



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                                                    • AVansi7465@aol.com
                                                      In a message dated 4/11/2004 8:09:40 PM Eastern Daylight Time, csean@shaw.ca writes: Tatezi, I am worried about your rapid heartbeat too.....I had that when I
                                                      Message 26 of 27 , Apr 12, 2004
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                                                        In a message dated 4/11/2004 8:09:40 PM Eastern Daylight Time, csean@...
                                                        writes:
                                                        Tatezi, I am worried about your rapid heartbeat too.....I had that when I
                                                        tried the old combo....in fact, I still have it and am going to a cardiologist
                                                        after having an ECG. That's one of the many reasons I quit the treatment....my
                                                        heart was racing so fast I couldn't take my pulse and then I started getting
                                                        chest pains. I think it's from the riba rather than the interferon....which
                                                        could be why they told you to drop a pill. But that's not acceptable in your
                                                        case. Try to sleep as much as you can this weekend and go to the hospital
                                                        immediately if you get chest pains or your heart is racing. I don't know the
                                                        numbers like Claudine does but you're way too low for hemoglobin. I'll feel better
                                                        knowing you can get ahold of your doc on Monday....please, do nothing
                                                        physical ok?
                                                        I agree take it slow. I had that same problem while on treatment, but I put
                                                        it off to the fact that I received two air emboli with the same injection that
                                                        gave me Hep C. So........


                                                        [Non-text portions of this message have been removed]
                                                      • gailsamples@earthlink.net
                                                        ... From: Tatezi Sent: Apr 9, 2004 10:15 AM To: Hep Subject: [GIWorld-Hepatitis] Hi all...with an
                                                        Message 27 of 27 , Apr 12, 2004
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                                                          -----Original Message-----
                                                          From: Tatezi <tatezi@...>
                                                          Sent: Apr 9, 2004 10:15 AM
                                                          To: Hep <GIWorld-Hepatitis@yahoogroups.com>
                                                          Subject: [GIWorld-Hepatitis] Hi all...with an update

                                                          And I haven't had a cigarette in 10 days. Really didn't want or plan to quit (cigarettes are my only vice in life...I think everyone deserves at least one vice). Got up one morning and decided to see how long I could go without a cigarette...went all day relatively easily. Next day I got up and decided to see if I could go all day again. That was 11 days ago. Today I'm going to try to not smoke and then it will be 11 days.


                                                          Tatezi-

                                                          Congrats on not smoking! Hopefully you'll be able to keep it up-it is an expensive habit nowadays. Not like the good old days of 25 cents a pack!

                                                          gail
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