introducing myself

March 7, 2010

Welcome Cheryl and your daughter, I am sorry to hear that your daughter and you both have this. I am Glad you are here in this caring group. Good place to be. I am waiting on the new drug. I have time for it. Just do what you feel is right for you and your daughter. I have aroung 50-60 lbs to lose also. Been doing okay so far. Keep in touch often and let us know how you all are doing. Love to hear from you. Sorry I don't have much information. I am new to this myself.

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From: Honey1962@... <Honey1962@...>Subject: [ ] Introducing myself Date: Saturday, March 6, 2010, 5:41 PM

Hello all I am sort of a newbie, been here a couple of months just reading and learning new things. I am 47 years old and was diagnosed last year after test results showed my 16 year old daughter tested positive for the Hep C virus. Her doctor said I should be tested to rule out that she had gotten it from me. My tests also came back positive for the virus, I was in total shock when we were contacted from my daughter's doctor and then to realize I was the one who had been the reason she was facing this, has been devastating to us. I know how I contacted it, very bad decisions I made in the early 80's. When I married and decided to have children, I told my OB of what I did and asked him to test me to make sure I didn't have HIV or anything else

related to IV drug use. Happily I was told I didn't have HIV, but back in 1987 they didn't test for HCV. I went on to have 2 children, my son (who is older) and my husband have not been tested yet. My son doesn't have health insurance at the moment and I don't want this to be considered as a pre-existing condition for when he does get it so he is waiting to get tested. My husband for whatever reason won't go get tested. He also dabbled with drug use in the early 80's and my very well have it also. My daughter and I have both started seeing a gastro doctor, and we are thinking about starting treatment, but with all the side effects I am not sure if we should wait until the new treatment comes out or start the one that is available now? We are both genotype 1a. My HCV RNA SER/PLAS PCR is 1660000. My HEPATITIS C VIRUS RNA, LOG, SER/PLAS, SIGNAL AMPLIFIED PROBE is 6.22.

My liver function test results are as follows

Component Your value Standard range

TOTAL PROTEIN

7.8

6.3-8.3 G/DL

ALBUMIN

4.3

4.0-5.4 G/DL

ALT

76

0-50 U/L

AST

64

9-53 U/L

ALKALINE PHOSPHATASE

59

35-129 U/L

BILIRUBIN, TOTAL

0.3

0.2-1.3 MG/DL

BILIRUBIN, DIRECT

0.1

0.0-0.3 MG/DL

I don't know what any of the test results mean, I have not been back to my gastro doctor since Sept when I told him I would start the treatment, but from what I read I should have a liver biopsy first. He didn't suggest one before I start treatment. I was scheduled to do a liver biopsy and chickened out. Everything was happening so fast I just needed time to research and learn everything I can learn. I am for the most part healthy, I am about 40 - 50 lbs overweight and on a low dose of high blood pressure med to control my blood pressure. I am trying to loose weight before starting the treatment, I heard that helps in the success rate.

I appreciate all the information that I have learned from this list and will keep you up to date as to what I decide to do as to treatment. Please feel free to share any of what you've learned and any encouragement I could really use it.

Cheryl

March 7, 2010

Gloria,

Thank you so much for your kind words and encouragement. I would love to personally email you, but I don't know how to find your email. If you could send it to me at my email which is honey1962@... I would just love to chat with you I am frightened out of my mind and you sound so confident and have personal knowledge. Thank you again for taking the time to write me, this group has been such a savior to me since I joined.

Cheryl

Re: [ ] Introducing myself

Cheryl

I am sooo sorry to hear about your daughter!! As a mother, as well, that was one of my greatest concerns and at that time, there sure wasn't a whole lot of information about the possibility. Of course, he wouldn't just go to a Dr. for the simple little blood test either. Eventually, while he was back home and going to the local college, he got very ill and two sets of Hepatitis tests were run on him. (He was the brightest yellow I've ever seen on a human being). But, it turned out HALLELUH that it was not the Hep C; but, get this - Mono....

Now, your daughter is very young and if she is healthy otherwise, there should be VERY little problems with kicking the virus. In fact, I'd venture to say that she is not showing much in the way of bad readings etc.

As for yourself, yes - your readings are a little over the norm; but, really not much at all. Also, thoses ALT and AST (liver enzyme readings) flucuate constantly. Could even be that the next time you have a test, they could read within the normal range. I'll bet that you haven't even felt ill or overly fatigued have you??? That, unfortunately is the "silent" part of this epidemic.

Now, please, the liver biopsy for either one of you, is the most important of all the tests!! Here's a suggestion, because you mentioned you are a bit overweight (aren't we all in our mid years) ask the Gastro to suggest on the request for the biopsy, that they use extra freezing. Plain outright tell him/her that the biopsy scares you spitless. Even overact your fear!! On my last biopsy, that wonderful Radiologist made sure she got the freezing right through my fat and right down to the liver (and I didn't even ask for extra). Livers can not be frozen; however, but neither do they have any nerves, so one can not feel anything from it. Thus, I did not feel a thing and just found it boring that I had to wait for the hour afterwards, in case I started bleeding!!! Oh and don't be afraid to tell the Radiologist as well, when he/she comes in to do the procedure. Beef it up real good!!! There is a second or two that you are not to move, so if you are shivering in fear before that, they are more likely to ensure enough freezing because it's easier on them then.

Now, as for treatment!! I'm thinking just at the moment that the Gastro is not going to push very hard about treatment with your readings. As Don has probably already told you, there is a new addition to an old treatment, that is supposed to raise the chances of genotype 1's getting a higher probability of success. My first treatment, back in 2004/2005 ended after 48 weeks, that I was a Non-Responder. In the early months, I was responding wonderfully and in fact, it shocked the whole team that was working with me that it ended with such a disappointment. However, as a result of it, as well, I was selected to go on the Clinical Trial with the Protease Inhibitor along with Interferon/Ribivirn last year. I'm so pleased to say that I appear to be totally successful after this round.

The only reason that I would suggest the wait, is because, you want to do the treatment that has the highest rate of success. It should be available at the end of this year or early next. Yes, it is a long haul, doing it for 48 weeks. With the new Trio, there is a great possibility that you would only have to do 24 weeks; however, I haven't seen studies on the success of that yet. Truthfully, on my first treatment, I did not experience many side affects and the ones that did happen, like a hyper thyroid and a bit of hair loss, was all fixed the moment the treatment was ended. I never got sick; but, just more fatigued than normal. The HepC nurses suggested I pick a certain evening of the week, when the next couple of days would be times that I wouldn't have to be so busy. So, I choose a Friday night!! As far as I was concerned, the weekends were mine for that 48 weeks. Sometimes I needed the whole weekend and sometimes I was honestly just being lazy... By the way, I lost MAYBE 5 lbs from start to finish and of course, the side that I really wanted was the weight loss.

Now, my 2nd treatment, kicked me with sides that were different from the 1st. I lost a whole lot less hair; but, did also loose 30 lbs. Not from being sick either, just because it seemed to want to shed and especially as I began to stop some little habits. However, I could certainly stand to loose another 30 lbs and it would leave me just a plump older lady and not a FAT one. LOL LOL

Know that I would be here for you through the entire treatment and you can use my personal e-mail address anytime at all. In fact, if you use MSN, that same e-mail address will lead you right to my MSN.

Please keep the spirit really high and don't let the stress of any of this make you any sicker!!! I always looked to the successful finish and doing something that would be entirely enjoyable to me. Like, taking the travel trailer out to one of the numerous beaches surrounded by hugh trees, on this island where I live. Sometimes, I even used the wish that my son would make me a Grandmother some day; but, couldn't do that so much because it was just a fantasy LOL

Gloria

Hello all I am sort of a newbie, been here a couple of months just reading and learning new things. I am 47 years old and was diagnosed last year after test results showed my 16 year old daughter tested positive for the Hep C virus. Her doctor said I should be tested to rule out that she had gotten it from me. My tests also came back positive for the virus, I was in total shock when we were contacted from my daughter's doctor and then to realize I was the one who had been the reason she was facing this, has been devastating to us. I know how I contacted it, very bad decisions I made in the early 80's. When I married and decided to have children, I told my OB of what I did and asked him to test me to make sure I didn't have HIV or anything else related to IV drug use. Happily I was told I didn't have HIV, but back in 1987 they didn't test for HCV. I went on to have 2 children, my son (who is older) and my husband have not been tested yet. My son doesn't have health insurance at the moment and I don't want this to be considered as a pre-existing condition for when he does get it so he is waiting to get tested. My husband for whatever reason won't go get tested. He also dabbled with drug use in the early 80's and my very well have it also. My daughter and I have both started seeing a gastro doctor, and we are thinking about starting treatment, but with all the side effects I am not sure if we should wait until the new treatment comes out or start the one that is available now? We are both genotype 1a. My HCV RNA SER/PLAS PCR is 1660000. My HEPATITIS C VIRUS RNA, LOG, SER/PLAS, SIGNAL AMPLIFIED PROBE is 6.22.

My liver function test results are as follows

Component Your value Standard range

TOTAL PROTEIN

7.8

6.3-8.3 G/DL

ALBUMIN

4.3

4.0-5.4 G/DL

ALT

76

0-50 U/L

AST

64

9-53 U/L

ALKALINE PHOSPHATASE

59

35-129 U/L

BILIRUBIN, TOTAL

0.3

0.2-1.3 MG/DL

BILIRUBIN, DIRECT

0.1

0.0-0.3 MG/DL

I don't know what any of the test results mean, I have not been back to my gastro doctor since Sept when I told him I would start the treatment, but from what I read I should have a liver biopsy first. He didn't suggest one before I start treatment. I was scheduled to do a liver biopsy and chickened out. Everything was happening so fast I just needed time to research and learn everything I can learn. I am for the most part healthy, I am about 40 - 50 lbs overweight and on a low dose of high blood pressure med to control my blood pressure. I am trying to loose weight before starting the treatment, I heard that helps in the success rate.

I appreciate all the information that I have learned from this list and will keep you up to date as to what I decide to do as to treatment. Please feel free to share any of what you've learned and any encouragement I could really use it.

Cheryl

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March 8, 2010

Hello Cheryl,I would love to email personally with you also. I have had Hep C since (well I don't know when I got it) but I found out in 1993 that I had it. I have been on the medicine twice now (with no success once completed) and love reading and replying from time to time. I always am here for anyone and I know everyone is here for me when I need it. I will send an email to your honey1962@aol and go from there. We are close in age also, I was born in 1960.Have a good day,SheilaFrom: "Honey1962@..." <Honey1962@...> Sent: Sat, March 6, 2010 10:51:00 PMSubject: Re: [ ] Introducing myself

Gloria,

Thank you so much for your kind words and encouragement. I would love to personally email you, but I don't know how to find your email. If you could send it to me at my email which is honey1962aol (DOT) com I would just love to chat with you I am frightened out of my mind and you sound so confident and have personal knowledge. Thank you again for taking the time to write me, this group has been such a savior to me since I joined.

Cheryl

Re: [ ] Introducing myself

Cheryl

I am sooo sorry to hear about your daughter!! As a mother, as well, that was one of my greatest concerns and at that time, there sure wasn't a whole lot of information about the possibility. Of course, he wouldn't just go to a Dr. for the simple little blood test either. Eventually, while he was back home and going to the local college, he got very ill and two sets of Hepatitis tests were run on him. (He was the brightest yellow I've ever seen on a human being). But, it turned out HALLELUH that it was not the Hep C; but, get this - Mono....

Now, your daughter is very young and if she is healthy otherwise, there should be VERY little problems with kicking the virus. In fact, I'd venture to say that she is not showing much in the way of bad readings etc.

As for yourself, yes - your readings are a little over the norm; but, really not much at all. Also, thoses ALT and AST (liver enzyme readings) flucuate constantly. Could even be that the next time you have a test, they could read within the normal range. I'll bet that you haven't even felt ill or overly fatigued have you??? That, unfortunately is the "silent" part of this epidemic.

Now, please, the liver biopsy for either one of you, is the most important of all the tests!! Here's a suggestion, because you mentioned you are a bit overweight (aren't we all in our mid years) ask the Gastro to suggest on the request for the biopsy, that they use extra freezing. Plain outright tell him/her that the biopsy scares you spitless. Even overact your fear!! On my last biopsy, that wonderful Radiologist made sure she got the freezing right through my fat and right down to the liver (and I didn't even ask for extra). Livers can not be frozen; however, but neither do they have any nerves, so one can not feel anything from it. Thus, I did not feel a thing and just found it boring that I had to wait for the hour afterwards, in case I started bleeding!!! Oh and don't be afraid to tell the Radiologist as well, when he/she comes in to do the procedure. Beef it up

real good!!! There is a second or two that you are not to move, so if you are shivering in fear before that, they are more likely to ensure enough freezing because it's easier on them then.

Now, as for treatment!! I'm thinking just at the moment that the Gastro is not going to push very hard about treatment with your readings. As Don has probably already told you, there is a new addition to an old treatment, that is supposed to raise the chances of genotype 1's getting a higher probability of success. My first treatment, back in 2004/2005 ended after 48 weeks, that I was a Non-Responder. In the early months, I was responding wonderfully and in fact, it shocked the whole team that was working with me that it ended with such a disappointment. However, as a result of it, as well, I was selected to go on the Clinical Trial with the Protease Inhibitor along with Interferon/Ribivirn last year. I'm so pleased to say that I appear to be totally successful after this round.

The only reason that I would suggest the wait, is because, you want to do the treatment that has the highest rate of success. It should be available at the end of this year or early next. Yes, it is a long haul, doing it for 48 weeks. With the new Trio, there is a great possibility that you would only have to do 24 weeks; however, I haven't seen studies on the success of that yet. Truthfully, on my first treatment, I did not experience many side affects and the ones that did happen, like a hyper thyroid and a bit of hair loss, was all fixed the moment the treatment was ended. I never got sick; but, just more fatigued than normal. The HepC nurses suggested I pick a certain evening of the week, when the next couple of days would be times that I wouldn't have to be so busy. So, I choose a Friday night!! As far as I was concerned, the weekends were mine for that 48 weeks. Sometimes I needed the whole

weekend and sometimes I was honestly just being lazy... By the way, I lost MAYBE 5 lbs from start to finish and of course, the side that I really wanted was the weight loss.

Now, my 2nd treatment, kicked me with sides that were different from the 1st. I lost a whole lot less hair; but, did also loose 30 lbs. Not from being sick either, just because it seemed to want to shed and especially as I began to stop some little habits. However, I could certainly stand to loose another 30 lbs and it would leave me just a plump older lady and not a FAT one. LOL LOL

Know that I would be here for you through the entire treatment and you can use my personal e-mail address anytime at all. In fact, if you use MSN, that same e-mail address will lead you right to my MSN.

Please keep the spirit really high and don't let the stress of any of this make you any sicker!!! I always looked to the successful finish and doing something that would be entirely enjoyable to me. Like, taking the travel trailer out to one of the numerous beaches surrounded by hugh trees, on this island where I live. Sometimes, I even used the wish that my son would make me a Grandmother some day; but, couldn't do that so much because it was just a fantasy LOL

Gloria

Hello all I am sort of a newbie, been here a couple of months just reading and learning new things. I am 47 years old and was diagnosed last year after test results showed my 16 year old daughter tested positive for the Hep C virus. Her doctor said I should be tested to rule out that she had gotten it from me. My tests also came back positive for the virus, I was in total shock when we were contacted from my daughter's doctor and then to realize I was the one who had been the reason she was facing this, has been devastating to us. I know how I contacted it, very bad decisions I made in the early 80's. When I married and decided to have children, I told my OB of what I did and asked him to test me to make sure I didn't have HIV or anything else related to IV drug use. Happily I was

told I didn't have HIV, but back in 1987 they didn't test for HCV. I went on to have 2 children, my son (who is older) and my husband have not been tested yet. My son doesn't have health insurance at the moment and I don't want this to be considered as a pre-existing condition for when he does get it so he is waiting to get tested. My husband for whatever reason won't go get tested. He also dabbled with drug use in the early 80's and my very well have it also. My daughter and I have both started seeing a gastro doctor, and we are thinking about starting treatment, but with all the side effects I am not sure if we should wait until the new treatment comes out or start the one that is available now? We are both genotype 1a. My HCV RNA SER/PLAS PCR is 1660000. My HEPATITIS C VIRUS RNA, LOG, SER/PLAS, SIGNAL AMPLIFIED PROBE is 6.22.

My liver function test results are as follows

Component Your value Standard range

TOTAL PROTEIN

7.8

6.3-8.3 G/DL

ALBUMIN

4.3

4.0-5.4 G/DL

ALT

76

0-50 U/L

AST

64

9-53 U/L

ALKALINE PHOSPHATASE

59

35-129 U/L

BILIRUBIN, TOTAL

0.3

0.2-1.3 MG/DL

BILIRUBIN, DIRECT

0.1

0.0-0.3 MG/DL

I don't know what any of the test results mean, I have not been back to my gastro doctor since Sept when I told him I would start the treatment, but from what I read I should have a liver biopsy first. He didn't suggest one before I start treatment. I was scheduled to do a liver biopsy and chickened out. Everything was happening so fast I just needed time to research and learn everything I can learn. I am for the most part healthy, I am about 40 - 50 lbs overweight and on a low dose of high blood pressure med to control my blood pressure. I am trying to loose weight before starting the treatment, I heard that helps in the success rate.

I appreciate all the information that I have learned from this list and will keep you up to date as to what I decide to do as to treatment. Please feel free to share any of what you've learned and any encouragement I could really use it.

Cheryl

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March 9, 2010

SheilaI too, hope that Cheryl continues communication with the whole group. All and anyone here are very important because sometimes we just don't know when our sharing is affecting another hurting soul out there. There still are sooo many!!!Gloria

Hey Gloria,I didn't say "closer" in age but close in age "also", lol. I hope Cheryl can communicate with both of us,,,you have a bit more experience in this then I do and are more familiar with this website.Love you,Sheila From: Gloria <gadamscan (DOT) ca> Sent: Tue, March 9,

2010 1:22:24 AMSubject: Re: [ ] Introducing myself

Hey LadiesI'm only 10 yrs older. LOL LOLGloria

Hello Cheryl,I would love to email personally with you also. I have had Hep C since (well I don't know when I got it) but I found out in 1993 that I had it. I have been on the medicine twice now (with no success once completed) and love reading and replying from time to time. I always am here for anyone and I know everyone is here for me when I need it. I will send an email to your honey1962@aol and go from there. We are close in age also, I was born in 1960.Have a good day,SheilaFrom: "Honey1962aol (DOT) com"

<Honey1962aol (DOT) com> Sent: Sat, March 6, 2010 10:51:00 PMSubject: Re: [ ] Introducing myself