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Re: [GIWorld-Hepatitis] Hi all...with an update

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  • 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 1 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 2 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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      • 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 3 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]



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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 4 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 5 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 6 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 7 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 8 of 27 , Apr 10, 2004
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                    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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                  • 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 9 of 27 , Apr 10, 2004
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                      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 10 of 27 , Apr 10, 2004
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                        --- 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 11 of 27 , Apr 10, 2004
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                          --- 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 12 of 27 , Apr 10, 2004
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                            --- 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 13 of 27 , Apr 10, 2004
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                              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 14 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 15 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 16 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 17 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 18 of 27 , Apr 11, 2004
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                                        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 19 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 20 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 21 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 22 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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