Re: Forgive my ignorance

[Guest guest]

Rain,Let me be the first one to weigh in on this for you.... First of all you are not ignorant... there are no dumb questions here. We are here to help you. I know you have read things here about rough experiences with treatment. What you need to understand is that not everyones walk thru treatment is the same. What happened to me may not happen to you. There are people here that are sailing thru treatment. My treatment was rough but I was on very high doses of the medications... higher than the recommended dosage and I walked thru hell because of it. Here is the good side, I have been clear of the virus for over 5 years now. It's gone. Not everyone has a horrible time. Your

experience will be different from anyone else's. We each take the treatment differently. So don't expect awful. Try to stay positive and you very well may sail thru the treatment with very little side effects. Even at the worst of my treatment, if I was told tomorrow that I had to go thru it again I wouldn't hesitate. I'd do it again. The big payoff for the treatment is clearing the virus... letting your liver heal. Your liver is the one organ in your body that can regenerate itself. Basically when you finish treatment your liver is starting to heal. Producing new liver tissue that will compensate for the damage that has been done to it by the Hep C. If you don't take the treatment... that's a road that can be more painful than the treatment itself. You can look forward to more scarring of your liver, cirrhosis and very possibly liver cancer. Your liver will swell...

eventually you will get sick and that is all worse than the 48 weeks of treatment at it's worst. By going thru treatment you are giving yourself a second chance... the chance of living a normal life without the fear of knowing that all sorts of things are happening to your liver because you didn't try to stop it. Please don't make your decision on treatment based on our experiences, yours will be different. If you are healthy enough to go thru the treatment, please give it a chance... Give yourself a shot at getting rid of this thing. We are all here to help you. I came out on the other side and that is why I am here. So I can pay it forward and help people like you who have questions that they think are ignorant... I'm glad you asked that question.. I'm sure other people who are facing treatment had the same question but didn't pop in here and ask... hopefully they are reading this and

it helps them.Whatever you decide to do, and it is your decision, we will be here to support you. Just a side note... When I started treatment, I had the virus for 25 years but it had just been diagnosed. I was told without treatment I would have to be put on the liver transplant list within 6 months and that I would die waiting for a liver.... that was all the info I needed. My son and my husband pretty much made the decision that I was going to take the treatment... i was too emotional and unstable to make the decision myself. I asked my immediate family and they were there for me. They still are. I wish you luck... and hope that you give treatment a shot. Hugs,Teri From: Rain <annamariestitt@...> Sent: Sun, May 16, 2010 11:07:27 AMSubject: [ ] Forgive my ignorance

I am still new at all of this I did have my biopsy and am genotype 1a but have yet to start treatment. I have been weighing my options and I have heard a lot of you talk about how awful the treatments are but what if you do not take any treatments what is the big payoff for the suffering through treatment?

[Guest guest]

Thank you Teri I appreciate the explanation. I am wanting to go through

treatment I am still trying to get in the liver clinic (my doctor referred me

three weeks ago) up here in Northern California so I am frustrated at how slow

things are moving.

Rain

>

> Rain,

> Let me be the first one to weigh in on this for you.... First of all you are

not ignorant... there are no dumb questions here. We are here to help you. I

know you have read things here about rough experiences with treatment. What you

need to understand is that not everyones walk thru treatment is the same. What

happened to me may not happen to you. There are people here that are sailing

thru treatment. My treatment was rough but I was on very high doses of the

medications... higher than the recommended dosage and I walked thru hell because

of it. Here is the good side, I have been clear of the virus for over 5 years

now. It's gone. Not everyone has a horrible time. Your experience will be

different from anyone else's. We each take the treatment differently. So don't

expect awful. Try to stay positive and you very well may sail thru the treatment

with very little side effects. Even at the worst of my treatment, if I was told

tomorrow that I

> had to go thru it again I wouldn't hesitate. I'd do it again. The big

payoff for the treatment is clearing the virus... letting your liver heal.

Your liver is the one organ in your body that can regenerate itself. Basically

when you finish treatment your liver is starting to heal. Producing new liver

tissue that will compensate for the damage that has been done to it by the Hep

C. If you don't take the treatment... that's a road that can be more painful

than the treatment itself. You can look forward to more scarring of your liver,

cirrhosis and very possibly liver cancer. Your liver will swell... eventually

you will get sick and that is all worse than the 48 weeks of treatment at it's

worst. By going thru treatment you are giving yourself a second chance... the

chance of living a normal life without the fear of knowing that all sorts of

things are happening to your liver because you didn't try to stop it. Please

don't make your decision

> on treatment based on our experiences, yours will be different. If you are

healthy enough to go thru the treatment, please give it a chance... Give

yourself a shot at getting rid of this thing. We are all here to help you. I

came out on the other side and that is why I am here. So I can pay it forward

and help people like you who have questions that they think are ignorant... I'm

glad you asked that question.. I'm sure other people who are facing treatment

had the same question but didn't pop in here and ask... hopefully they are

reading this and it helps them.

>

> Whatever you decide to do, and it is your decision, we will be here to support

you.

>

> Just a side note... When I started treatment, I had the virus for 25 years

but it had just been diagnosed. I was told without treatment I would have to be

put on the liver transplant list within 6 months and that I would die waiting

for a liver.... that was all the info I needed. My son and my husband pretty

much made the decision that I was going to take the treatment... i was too

emotional and unstable to make the decision myself. I asked my immediate family

and they were there for me. They still are.

>

> I wish you luck... and hope that you give treatment a shot.

>

> Hugs,

> Teri

>

>

>

> ________________________________

> From: Rain <annamariestitt@...>

>

> Sent: Sun, May 16, 2010 11:07:27 AM

> Subject: [ ] Forgive my ignorance

>

>

> I am still new at all of this I did have my biopsy and am genotype 1a but have

yet to start treatment. I have been weighing my options and I have heard a lot

of you talk about how awful the treatments are but what if you do not take any

treatments what is the big payoff for the suffering through treatment?

>

[Guest guest]

Rain,No problem with the explanation.. that is what I am here for.. to help. I'm at the been there done that stage and I actually have a lot to offer. I know you are frustrated, I wanted everything to start right away as soon as I found out I had Hep C. I was all "Let's get on with this so we can get it over with" but it doesn't work that way. I was diagnosed in November of 2004 and I started Treatment on August 2, 2005. They have to make sure you are not anemic, in my case I was very anemic so that problem had to be fixed first. The first liver specialist I was sent to I didn't like, it took me a few months of working with him to figure that out. Then I asked my regular doctor for the name of the doctor

that he would send his wife or daughter to if she had Hep C. Then I got the name of the big gun. Sometimes you have to put it that way to get the good guys. Here is the good news.. Hep C progresses slowly so the time you are waiting isn't doing that much more damage. You have time to get things set up and do it right. Just finding out you have Hep C takes a while to get used to so take this down time to get your head wrapped around it. There is a lot of information out there and now is your chance to find out all you can. The process starts slowly, but once treatment starts, it's a roller coaster ride! You are going to be okay.... just breathe. Teri From: Rain <annamariestitt@...> Sent: Sun, May 16, 2010 11:55:50 AMSubject: [ ] Re: Forgive my ignorance

Thank you Teri I appreciate the explanation. I am wanting to go through treatment I am still trying to get in the liver clinic (my doctor referred me three weeks ago) up here in Northern California so I am frustrated at how slow things are moving.

Rain

>

> Rain,

> Let me be the first one to weigh in on this for you.... First of all you are not ignorant... there are no dumb questions here. We are here to help you. I know you have read things here about rough experiences with treatment. What you need to understand is that not everyones walk thru treatment is the same. What happened to me may not happen to you. There are people here that are sailing thru treatment. My treatment was rough but I was on very high doses of the medications... higher than the recommended dosage and I walked thru hell because of it. Here is the good side, I have been clear of the virus for over 5 years now. It's gone. Not everyone has a horrible time. Your experience will be different from anyone else's. We each take the treatment differently. So don't expect awful. Try to stay positive and you very well may sail thru the treatment with very little side effects. Even at the worst of my treatment, if I was told tomorrow

that I

> had to go thru it again I wouldn't hesitate. I'd do it again. The big payoff for the treatment is clearing the virus... letting your liver heal. Your liver is the one organ in your body that can regenerate itself. Basically when you finish treatment your liver is starting to heal. Producing new liver tissue that will compensate for the damage that has been done to it by the Hep C. If you don't take the treatment... that's a road that can be more painful than the treatment itself. You can look forward to more scarring of your liver, cirrhosis and very possibly liver cancer. Your liver will swell... eventually you will get sick and that is all worse than the 48 weeks of treatment at it's worst. By going thru treatment you are giving yourself a second chance... the chance of living a normal life without the fear of knowing that all sorts of things are happening to your liver because you didn't try to stop it. Please don't make your

decision

> on treatment based on our experiences, yours will be different. If you are healthy enough to go thru the treatment, please give it a chance... Give yourself a shot at getting rid of this thing. We are all here to help you. I came out on the other side and that is why I am here. So I can pay it forward and help people like you who have questions that they think are ignorant... I'm glad you asked that question.. I'm sure other people who are facing treatment had the same question but didn't pop in here and ask... hopefully they are reading this and it helps them.

>

> Whatever you decide to do, and it is your decision, we will be here to support you.

>

> Just a side note... When I started treatment, I had the virus for 25 years but it had just been diagnosed. I was told without treatment I would have to be put on the liver transplant list within 6 months and that I would die waiting for a liver.... that was all the info I needed. My son and my husband pretty much made the decision that I was going to take the treatment... i was too emotional and unstable to make the decision myself. I asked my immediate family and they were there for me. They still are.

>

> I wish you luck... and hope that you give treatment a shot.

>

> Hugs,

> Teri

>

>

>

> ________________________________

> From: Rain <annamariestitt@...>

>

> Sent: Sun, May 16, 2010 11:07:27 AM

> Subject: [ ] Forgive my ignorance

>

>

> I am still new at all of this I did have my biopsy and am genotype 1a but have yet to start treatment. I have been weighing my options and I have heard a lot of you talk about how awful the treatments are but what if you do not take any treatments what is the big payoff for the suffering through treatment?

>

[Guest guest]

RainI 100% agree with Teri! I had 2 years between the time that I was told that I had HepC and when I was sent to a specialist. I tried even more of the vitamins and supplements than I was already taking and I was very heavy into those. Even went as far as buying "Human Growth Hormones" because they were supposed to be a miracle. Unfortunately, my liver just carried right on toward cirrhosis!In 2004, they did the first liver biopsy on me - I was already a Stage 3 leaning away too close to Stage 4. Stage 3 is full fibrosis and Stage 4 meaning cirrhosis. Also, I am geno 1B. Well, actually speaking, I sailed right through that first treatment! Actually never gave a thought to anything except, just a few more weeks of that needle and I'll be

all through. So, yes it came as a total shock that I ended up being a Non-Responder. I hated the very idea of being an NR and not knowing what was going on with my liver or how quickly it could be collapsing.Finally, here in 2009, I was offered a Clinical Trial with the Protease Inhibitor included. Let's just say, I did not sail right through that treatment; but, it was mostly the emotional roller coaster. However, I too am showing clear of the virus now and should get my final word in June or July (well, as final as they ever give).I can share with you, being told at the beginning of 2009 that I had slipped over into cirrhosis was frightening; but, being told in 2010 that I am virus free, is such a relief that I can't begin to describe it. At least I know now that the ugly little virus (saw a picture once) is not chewing on my liver and going to have a chance to move to other organs or any of the other horrible things it does during it's course to take us to death.Like Teri - I refuse to go down without a fight!!!Gloria

Thank you Teri I appreciate the explanation. I am wanting to go through treatment I am still trying to get in the liver clinic (my doctor referred me three weeks ago) up here in Northern California so I am frustrated at how slow things are moving.

Rain

>

> Rain,

> Let me be the first one to weigh in on this for you.... First of all you are not ignorant... there are no dumb questions here. We are here to help you. I know you have read things here about rough experiences with treatment. What you need to understand is that not everyones walk thru treatment is the same. What happened to me may not happen to you. There are people here that are sailing thru treatment. My treatment was rough but I was on very high doses of the medications... higher than the recommended dosage and I walked thru hell because of it. Here is the good side, I have been clear of the virus for over 5 years now. It's gone. Not everyone has a horrible time. Your experience will be different from anyone else's. We each take the treatment differently. So don't expect awful. Try to stay positive and you very well may sail thru the treatment with very little side effects. Even at the worst of my treatment, if I was told tomorrow

that I

> had to go thru it again I wouldn't hesitate. I'd do it again. The big payoff for the treatment is clearing the virus... letting your liver heal. Your liver is the one organ in your body that can regenerate itself. Basically when you finish treatment your liver is starting to heal. Producing new liver tissue that will compensate for the damage that has been done to it by the Hep C. If you don't take the treatment... that's a road that can be more painful than the treatment itself. You can look forward to more scarring of your liver, cirrhosis and very possibly liver cancer. Your liver will swell... eventually you will get sick and that is all worse than the 48 weeks of treatment at it's worst. By going thru treatment you are giving yourself a second chance... the chance of living a normal life without the fear of knowing that all sorts of things are happening to your liver because you didn't try to stop it. Please don't make your

decision

> on treatment based on our experiences, yours will be different. If you are healthy enough to go thru the treatment, please give it a chance... Give yourself a shot at getting rid of this thing. We are all here to help you. I came out on the other side and that is why I am here. So I can pay it forward and help people like you who have questions that they think are ignorant... I'm glad you asked that question.. I'm sure other people who are facing treatment had the same question but didn't pop in here and ask... hopefully they are reading this and it helps them.

>

> Whatever you decide to do, and it is your decision, we will be here to support you.

>

> Just a side note... When I started treatment, I had the virus for 25 years but it had just been diagnosed. I was told without treatment I would have to be put on the liver transplant list within 6 months and that I would die waiting for a liver.... that was all the info I needed. My son and my husband pretty much made the decision that I was going to take the treatment... i was too emotional and unstable to make the decision myself. I asked my immediate family and they were there for me. They still are.

>

> I wish you luck... and hope that you give treatment a shot.

>

> Hugs,

> Teri

>

>

>

> ________________________________

> From: Rain <annamariestitt@...>

>

> Sent: Sun, May 16, 2010 11:07:27 AM

> Subject: [ ] Forgive my ignorance

>

>

> I am still new at all of this I did have my biopsy and am genotype 1a but have yet to start treatment. I have been weighing my options and I have heard a lot of you talk about how awful the treatments are but what if you do not take any treatments what is the big payoff for the suffering through treatment?

>

[Guest guest]

Hi I am Cinder and I have not done treatment as of yet. I am going to do it though. The payoff is I will be Healthier. I will have more time with my husband. I will be saving my life. I will stop the damage from getting worse in my liver. It is a personal choice if you do treatment or not. I have too many reasons to do it. I want to fight it. I am glad I will have the chance to fight this dragon. Some won't be as lucky as I am and won't have a chance to fight it and some will die before being able to fight it. Some are too ill from other sicknesses to do tx. They would love to have the chance to do tx and are told they won't get to. I feel so bad for them. I know someone who wants it so bad and doesn't think the chance will ever come. All we can do is hope and pray for ones in those situations. Some just want to do other alternatives. It may keep it

somewhat at bay but won't give you the cure. There are no guarantees. We all just do our best. Hope for the best. I would not call it ignorance I would call it curious.

Hope this helped in some way. Cinder

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From: Rain <annamariestitt@...>Subject: [ ] Forgive my ignorance Date: Sunday, May 16, 2010, 11:07 AM

I am still new at all of this I did have my biopsy and am genotype 1a but have yet to start treatment. I have been weighing my options and I have heard a lot of you talk about how awful the treatments are but what if you do not take any treatments what is the big payoff for the suffering through treatment?

[Guest guest]

The waiting game is very stressful. I would go between kill mode and get drunk mode. Never did either. What I hate the most is getting those phone calls not from the dr but from the receptions. "Dr said to stop all tx until he sees you next week your blood work is not good. But dont worry stress is not good for you. Good Bye" What the heck is that? They dont understand that a week or 24 hours is an eternity to those of us who are waiting for some kind of answer.

From: Rain <annamariestitt@...> Sent: Sun, May 16, 2010 11:55:50 AMSubject: [ ] Re: Forgive my ignorance

Thank you Teri I appreciate the explanation. I am wanting to go through treatment I am still trying to get in the liver clinic (my doctor referred me three weeks ago) up here in Northern California so I am frustrated at how slow things are moving.Rain>> Rain,> Let me be the first one to weigh in on this for you.... First of all you are not ignorant... there are no dumb questions here. We are here to help you. I know you have read things here about rough experiences with treatment. What you need to understand is that not everyones walk thru treatment is the same. What happened to me may not happen to you. There are people here that are sailing thru treatment. My treatment was rough but I was on very

high doses of the medications... higher than the recommended dosage and I walked thru hell because of it. Here is the good side, I have been clear of the virus for over 5 years now. It's gone. Not everyone has a horrible time. Your experience will be different from anyone else's. We each take the treatment differently. So don't expect awful. Try to stay positive and you very well may sail thru the treatment with very little side effects. Even at the worst of my treatment, if I was told tomorrow that I> had to go thru it again I wouldn't hesitate. I'd do it again. The big payoff for the treatment is clearing the virus... letting your liver heal. Your liver is the one organ in your body that can regenerate itself. Basically when you finish treatment your liver is starting to heal. Producing new liver tissue that will compensate for the damage that has been done to it by the Hep C. If you don't take the treatment... that's a road that can be more

painful than the treatment itself. You can look forward to more scarring of your liver, cirrhosis and very possibly liver cancer. Your liver will swell... eventually you will get sick and that is all worse than the 48 weeks of treatment at it's worst. By going thru treatment you are giving yourself a second chance... the chance of living a normal life without the fear of knowing that all sorts of things are happening to your liver because you didn't try to stop it. Please don't make your decision> on treatment based on our experiences, yours will be different. If you are healthy enough to go thru the treatment, please give it a chance... Give yourself a shot at getting rid of this thing. We are all here to help you. I came out on the other side and that is why I am here. So I can pay it forward and help people like you who have questions that they think are ignorant... I'm glad you asked that question.. I'm sure other people who are facing

treatment had the same question but didn't pop in here and ask... hopefully they are reading this and it helps them.> > Whatever you decide to do, and it is your decision, we will be here to support you. > > Just a side note... When I started treatment, I had the virus for 25 years but it had just been diagnosed. I was told without treatment I would have to be put on the liver transplant list within 6 months and that I would die waiting for a liver.... that was all the info I needed. My son and my husband pretty much made the decision that I was going to take the treatment... i was too emotional and unstable to make the decision myself. I asked my immediate family and they were there for me. They still are. > > I wish you luck... and hope that you give treatment a shot. > > Hugs,> Teri > > > > ________________________________> From: Rain

<annamariestitt@...>> > Sent: Sun, May 16, 2010 11:07:27 AM> Subject: [ ] Forgive my ignorance> > > I am still new at all of this I did have my biopsy and am genotype 1a but have yet to start treatment. I have been weighing my options and I have heard a lot of you talk about how awful the treatments are but what if you do not take any treatments what is the big payoff for the suffering through treatment?>

[Guest guest]

WOW! I guess I had it even better than I thought.... when my doctor had concerns about anything that was going on with my treatment, he had his nurse call me and he was always standing right beside her and when she was done he would get on the phone and ask if I had any questions or concerns and just make sure I was okay. I have an amazing liver specialist. Teri From: Beth Frey <bethfrey42301@...> Sent: Sun, May 16, 2010 6:09:55 PMSubject: Re: [ ] Re: Forgive my ignorance

The waiting game is very stressful. I would go between kill mode and get drunk mode. Never did either. What I hate the most is getting those phone calls not from the dr but from the receptions. "Dr said to stop all tx until he sees you next week your blood work is not good. But dont worry stress is not good for you. Good Bye" What the heck is that? They dont understand that a week or 24 hours is an eternity to those of us who are waiting for some kind of answer.