advice wanted re: cirrhosis

[Guest guest]

Hi Everyone -

It's been a while since I've posted, but after a couple of recent doctor

visits, I need to reach out to the group for opinions, advice, and

support. That does not exclude any of you who are not going through

what I am. I am welcome to hear from anyone who has anything at all to

say that might help.

A little background is necessary. During my training in Grad. School, I

was inadvertently stuck by used needles by harried nurses. I contracted

Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

out, so they did bloodwork and based upon those results, followed with a

live biopsy. At that time, I had some minor fibrosis, but due to the

fact that I also suffer from major depression - recurrent, they wanted

to wait a bit before the " cocktail " of interferon and ribarviran.

One year later, I had my second biopsy and had progressed to end stage

cirrhosis. I've know this now for a year, but it still flies in the

face of the normal progression of the disease. As I am sure you all

know, it normally takes 3 decades or so before one begins to develop

liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

of that happening are 1 in 5. So, not only am I very much in that

unlucky 20%, but I developed end stage cirrhosis in one year - if you

consider that the year before, the biopsy did not indicate impending

cirrhosis. I suppose you could say it took from the time I was

infected, but even that was a 5 year window for my Hep. C. to become

Cirrhosis.

At the time that the biopsy showed cirrhosis (severe), they decided to

do the cocktail. They insisted upon doing it in the hospital - at least

at the beginning of tx. So, the G.I. tells me that I still have a 50/50

chance of eradicating the Hep. C., and the hope was that my lliver would

regenerate. (It was only later that I learned from my current doc. at

Mass General in Boston that once you have developed cirrhosis, the

treatments has only a 5% chance of having any effect whatsoever. On the

Hep. C. But it sure did have an effect on my. I immediately shot to a

body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

father, attempted suicide and more. After four weeks of the most

hellish experience of my life, one morning I woke up and thought " I

can't do this for a year. Just can't. Something bad WILL happen. " The

day I made that decision I had the most violent and longest seizure my

dad has ever seen. (He's seen his share in healthcare.) I eventually

came out of it and that's when I switched G.I.s who informed me that he

will NEVER give me that treatment again.

That's the story thus far. Now the questions:

1) Since my body cannot tolerate " the cocktail " (and by the way, it

infuriates me that there's only one option here, considering that

cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

think there's a bias, since some cirrhostic patients got that way from

ingesting too much alcohol (another under-treated disease) with a BIG

ol' stigma attached. For those of you wondering, I haven't had a dring

since college and I'm 48 y.o. But I digress... Since I cannot take the

only treatment for Hep. C., if I am lucky enough to get a liver or

portion of a liver transplant, what will stop the Hep. C which still

rages throughout my body from kiling that liver. But more importantly,

2) Tranplantees have to take medication for the rest of their lives.

Guess what medication is used for anti-rejection of the liver?

Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

learned that there are none that will be available for at least eight

years. But that's only the time it takes to get through the FDA. I've

tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

candidate for EVERY ONE I've pursued. It just happened so fast, I

didn't even consider trials -- thinking I'd not be the one of five and

that I had decades before cirrhosis would devlop. Anyway, again there

is only ONE anti-rejection drug for liver transplantation, as is the

case with Hep. C. - and, gee, IT'S THE SAME DRUG!

I'm confused, frustrated, and feel doomed. I live about two hours from

my G.I. and he doesn't want to see me for a year...I suppose because

there's nothing he can do. As a proactive person, I asked him what I

could do. He shrugged and said " well, there's really no 'liver diet',

but certainly avoid salt.' He is a genius - don't misunderstand me - he

is a truly wonderful doctor and I feel like I'm in good hands, however

useful they may be in my case.

Any questions for me? I'd really like to hear from as many of you as

possible. My depression is, naturally, compounded by this along with

the fact that I have Seasonal Affective Disorder. I wish those damn

lamps weren't so expensive. Anybody know of a place that sells them for

less that half of my disability check??? Does anyone else experience

confusion and forgetfulness. What about fatigue? I " hit the wall " at

noon and can sleep until the next morning. Please share your advice,

quesitions, experiences, and hope.

I maintain an open heart and an open mind, still have a great sense of

humor (although it's a little warped - but in this country how could it

not be???) and, most of all, I have a very rich inner life. My

spirituality has literally saved my life throughout this journey and

continues to - moment by moment. In closing, I'll share this with you

and really hope some of you will find it in yourselves to respond.

Submission to God's will is the softest pillow on which to

rest.--Unknown

I send my wishes for well-being to all of you in this group. We are

faced with a challenge. Do you know what the Chinese character for the

word " crisis " is? Danger and opportunity. My degree is in Rehab.

Psychology (ironic? Ya think?). And I'm willing to help any of you who

reach out to me. It's important for me to be in contact with this group

and make that promise. Hope to hear from some of you soon.

Peace and well-being,

jamie0916@...

=====================

Posted through Grouply, the better way

to access your like this one.

http://www.grouply.com/?code=post

type_D

[Guest guest]

Hi Everyone -

It's been a while since I've posted, but after a couple of recent doctor

visits, I need to reach out to the group for opinions, advice, and

support. That does not exclude any of you who are not going through

what I am. I am welcome to hear from anyone who has anything at all to

say that might help.

A little background is necessary. During my training in Grad. School, I

was inadvertently stuck by used needles by harried nurses. I contracted

Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

out, so they did bloodwork and based upon those results, followed with a

live biopsy. At that time, I had some minor fibrosis, but due to the

fact that I also suffer from major depression - recurrent, they wanted

to wait a bit before the " cocktail " of interferon and ribarviran.

One year later, I had my second biopsy and had progressed to end stage

cirrhosis. I've know this now for a year, but it still flies in the

face of the normal progression of the disease. As I am sure you all

know, it normally takes 3 decades or so before one begins to develop

liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

of that happening are 1 in 5. So, not only am I very much in that

unlucky 20%, but I developed end stage cirrhosis in one year - if you

consider that the year before, the biopsy did not indicate impending

cirrhosis. I suppose you could say it took from the time I was

infected, but even that was a 5 year window for my Hep. C. to become

Cirrhosis.

At the time that the biopsy showed cirrhosis (severe), they decided to

do the cocktail. They insisted upon doing it in the hospital - at least

at the beginning of tx. So, the G.I. tells me that I still have a 50/50

chance of eradicating the Hep. C., and the hope was that my lliver would

regenerate. (It was only later that I learned from my current doc. at

Mass General in Boston that once you have developed cirrhosis, the

treatments has only a 5% chance of having any effect whatsoever. On the

Hep. C. But it sure did have an effect on my. I immediately shot to a

body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

father, attempted suicide and more. After four weeks of the most

hellish experience of my life, one morning I woke up and thought " I

can't do this for a year. Just can't. Something bad WILL happen. " The

day I made that decision I had the most violent and longest seizure my

dad has ever seen. (He's seen his share in healthcare.) I eventually

came out of it and that's when I switched G.I.s who informed me that he

will NEVER give me that treatment again.

That's the story thus far. Now the questions:

1) Since my body cannot tolerate " the cocktail " (and by the way, it

infuriates me that there's only one option here, considering that

cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

think there's a bias, since some cirrhostic patients got that way from

ingesting too much alcohol (another under-treated disease) with a BIG

ol' stigma attached. For those of you wondering, I haven't had a dring

since college and I'm 48 y.o. But I digress... Since I cannot take the

only treatment for Hep. C., if I am lucky enough to get a liver or

portion of a liver transplant, what will stop the Hep. C which still

rages throughout my body from kiling that liver. But more importantly,

2) Tranplantees have to take medication for the rest of their lives.

Guess what medication is used for anti-rejection of the liver?

Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

learned that there are none that will be available for at least eight

years. But that's only the time it takes to get through the FDA. I've

tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

candidate for EVERY ONE I've pursued. It just happened so fast, I

didn't even consider trials -- thinking I'd not be the one of five and

that I had decades before cirrhosis would devlop. Anyway, again there

is only ONE anti-rejection drug for liver transplantation, as is the

case with Hep. C. - and, gee, IT'S THE SAME DRUG!

I'm confused, frustrated, and feel doomed. I live about two hours from

my G.I. and he doesn't want to see me for a year...I suppose because

there's nothing he can do. As a proactive person, I asked him what I

could do. He shrugged and said " well, there's really no 'liver diet',

but certainly avoid salt.' He is a genius - don't misunderstand me - he

is a truly wonderful doctor and I feel like I'm in good hands, however

useful they may be in my case.

Any questions for me? I'd really like to hear from as many of you as

possible. My depression is, naturally, compounded by this along with

the fact that I have Seasonal Affective Disorder. I wish those damn

lamps weren't so expensive. Anybody know of a place that sells them for

less that half of my disability check??? Does anyone else experience

confusion and forgetfulness. What about fatigue? I " hit the wall " at

noon and can sleep until the next morning. Please share your advice,

quesitions, experiences, and hope.

I maintain an open heart and an open mind, still have a great sense of

humor (although it's a little warped - but in this country how could it

not be???) and, most of all, I have a very rich inner life. My

spirituality has literally saved my life throughout this journey and

continues to - moment by moment. In closing, I'll share this with you

and really hope some of you will find it in yourselves to respond.

Submission to God's will is the softest pillow on which to

rest.--Unknown

I send my wishes for well-being to all of you in this group. We are

faced with a challenge. Do you know what the Chinese character for the

word " crisis " is? Danger and opportunity. My degree is in Rehab.

Psychology (ironic? Ya think?). And I'm willing to help any of you who

reach out to me. It's important for me to be in contact with this group

and make that promise. Hope to hear from some of you soon.

Peace and well-being,

jamie0916@...

=====================

Posted through Grouply, the better way

to access your like this one.

http://www.grouply.com/?code=post

type_D

[Guest guest]

Hi Everyone -

It's been a while since I've posted, but after a couple of recent doctor

visits, I need to reach out to the group for opinions, advice, and

support. That does not exclude any of you who are not going through

what I am. I am welcome to hear from anyone who has anything at all to

say that might help.

A little background is necessary. During my training in Grad. School, I

was inadvertently stuck by used needles by harried nurses. I contracted

Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

out, so they did bloodwork and based upon those results, followed with a

live biopsy. At that time, I had some minor fibrosis, but due to the

fact that I also suffer from major depression - recurrent, they wanted

to wait a bit before the " cocktail " of interferon and ribarviran.

One year later, I had my second biopsy and had progressed to end stage

cirrhosis. I've know this now for a year, but it still flies in the

face of the normal progression of the disease. As I am sure you all

know, it normally takes 3 decades or so before one begins to develop

liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

of that happening are 1 in 5. So, not only am I very much in that

unlucky 20%, but I developed end stage cirrhosis in one year - if you

consider that the year before, the biopsy did not indicate impending

cirrhosis. I suppose you could say it took from the time I was

infected, but even that was a 5 year window for my Hep. C. to become

Cirrhosis.

At the time that the biopsy showed cirrhosis (severe), they decided to

do the cocktail. They insisted upon doing it in the hospital - at least

at the beginning of tx. So, the G.I. tells me that I still have a 50/50

chance of eradicating the Hep. C., and the hope was that my lliver would

regenerate. (It was only later that I learned from my current doc. at

Mass General in Boston that once you have developed cirrhosis, the

treatments has only a 5% chance of having any effect whatsoever. On the

Hep. C. But it sure did have an effect on my. I immediately shot to a

body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

father, attempted suicide and more. After four weeks of the most

hellish experience of my life, one morning I woke up and thought " I

can't do this for a year. Just can't. Something bad WILL happen. " The

day I made that decision I had the most violent and longest seizure my

dad has ever seen. (He's seen his share in healthcare.) I eventually

came out of it and that's when I switched G.I.s who informed me that he

will NEVER give me that treatment again.

That's the story thus far. Now the questions:

1) Since my body cannot tolerate " the cocktail " (and by the way, it

infuriates me that there's only one option here, considering that

cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

think there's a bias, since some cirrhostic patients got that way from

ingesting too much alcohol (another under-treated disease) with a BIG

ol' stigma attached. For those of you wondering, I haven't had a dring

since college and I'm 48 y.o. But I digress... Since I cannot take the

only treatment for Hep. C., if I am lucky enough to get a liver or

portion of a liver transplant, what will stop the Hep. C which still

rages throughout my body from kiling that liver. But more importantly,

2) Tranplantees have to take medication for the rest of their lives.

Guess what medication is used for anti-rejection of the liver?

Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

learned that there are none that will be available for at least eight

years. But that's only the time it takes to get through the FDA. I've

tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

candidate for EVERY ONE I've pursued. It just happened so fast, I

didn't even consider trials -- thinking I'd not be the one of five and

that I had decades before cirrhosis would devlop. Anyway, again there

is only ONE anti-rejection drug for liver transplantation, as is the

case with Hep. C. - and, gee, IT'S THE SAME DRUG!

I'm confused, frustrated, and feel doomed. I live about two hours from

my G.I. and he doesn't want to see me for a year...I suppose because

there's nothing he can do. As a proactive person, I asked him what I

could do. He shrugged and said " well, there's really no 'liver diet',

but certainly avoid salt.' He is a genius - don't misunderstand me - he

is a truly wonderful doctor and I feel like I'm in good hands, however

useful they may be in my case.

Any questions for me? I'd really like to hear from as many of you as

possible. My depression is, naturally, compounded by this along with

the fact that I have Seasonal Affective Disorder. I wish those damn

lamps weren't so expensive. Anybody know of a place that sells them for

less that half of my disability check??? Does anyone else experience

confusion and forgetfulness. What about fatigue? I " hit the wall " at

noon and can sleep until the next morning. Please share your advice,

quesitions, experiences, and hope.

I maintain an open heart and an open mind, still have a great sense of

humor (although it's a little warped - but in this country how could it

not be???) and, most of all, I have a very rich inner life. My

spirituality has literally saved my life throughout this journey and

continues to - moment by moment. In closing, I'll share this with you

and really hope some of you will find it in yourselves to respond.

Submission to God's will is the softest pillow on which to

rest.--Unknown

I send my wishes for well-being to all of you in this group. We are

faced with a challenge. Do you know what the Chinese character for the

word " crisis " is? Danger and opportunity. My degree is in Rehab.

Psychology (ironic? Ya think?). And I'm willing to help any of you who

reach out to me. It's important for me to be in contact with this group

and make that promise. Hope to hear from some of you soon.

Peace and well-being,

jamie0916@...

=====================

Posted through Grouply, the better way

to access your like this one.

http://www.grouply.com/?code=post

type_D

[Guest guest]

Hi Everyone -

It's been a while since I've posted, but after a couple of recent doctor

visits, I need to reach out to the group for opinions, advice, and

support. That does not exclude any of you who are not going through

what I am. I am welcome to hear from anyone who has anything at all to

say that might help.

A little background is necessary. During my training in Grad. School, I

was inadvertently stuck by used needles by harried nurses. I contracted

Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

out, so they did bloodwork and based upon those results, followed with a

live biopsy. At that time, I had some minor fibrosis, but due to the

fact that I also suffer from major depression - recurrent, they wanted

to wait a bit before the " cocktail " of interferon and ribarviran.

One year later, I had my second biopsy and had progressed to end stage

cirrhosis. I've know this now for a year, but it still flies in the

face of the normal progression of the disease. As I am sure you all

know, it normally takes 3 decades or so before one begins to develop

liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

of that happening are 1 in 5. So, not only am I very much in that

unlucky 20%, but I developed end stage cirrhosis in one year - if you

consider that the year before, the biopsy did not indicate impending

cirrhosis. I suppose you could say it took from the time I was

infected, but even that was a 5 year window for my Hep. C. to become

Cirrhosis.

At the time that the biopsy showed cirrhosis (severe), they decided to

do the cocktail. They insisted upon doing it in the hospital - at least

at the beginning of tx. So, the G.I. tells me that I still have a 50/50

chance of eradicating the Hep. C., and the hope was that my lliver would

regenerate. (It was only later that I learned from my current doc. at

Mass General in Boston that once you have developed cirrhosis, the

treatments has only a 5% chance of having any effect whatsoever. On the

Hep. C. But it sure did have an effect on my. I immediately shot to a

body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

father, attempted suicide and more. After four weeks of the most

hellish experience of my life, one morning I woke up and thought " I

can't do this for a year. Just can't. Something bad WILL happen. " The

day I made that decision I had the most violent and longest seizure my

dad has ever seen. (He's seen his share in healthcare.) I eventually

came out of it and that's when I switched G.I.s who informed me that he

will NEVER give me that treatment again.

That's the story thus far. Now the questions:

1) Since my body cannot tolerate " the cocktail " (and by the way, it

infuriates me that there's only one option here, considering that

cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

think there's a bias, since some cirrhostic patients got that way from

ingesting too much alcohol (another under-treated disease) with a BIG

ol' stigma attached. For those of you wondering, I haven't had a dring

since college and I'm 48 y.o. But I digress... Since I cannot take the

only treatment for Hep. C., if I am lucky enough to get a liver or

portion of a liver transplant, what will stop the Hep. C which still

rages throughout my body from kiling that liver. But more importantly,

2) Tranplantees have to take medication for the rest of their lives.

Guess what medication is used for anti-rejection of the liver?

Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

learned that there are none that will be available for at least eight

years. But that's only the time it takes to get through the FDA. I've

tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

candidate for EVERY ONE I've pursued. It just happened so fast, I

didn't even consider trials -- thinking I'd not be the one of five and

that I had decades before cirrhosis would devlop. Anyway, again there

is only ONE anti-rejection drug for liver transplantation, as is the

case with Hep. C. - and, gee, IT'S THE SAME DRUG!

I'm confused, frustrated, and feel doomed. I live about two hours from

my G.I. and he doesn't want to see me for a year...I suppose because

there's nothing he can do. As a proactive person, I asked him what I

could do. He shrugged and said " well, there's really no 'liver diet',

but certainly avoid salt.' He is a genius - don't misunderstand me - he

is a truly wonderful doctor and I feel like I'm in good hands, however

useful they may be in my case.

Any questions for me? I'd really like to hear from as many of you as

possible. My depression is, naturally, compounded by this along with

the fact that I have Seasonal Affective Disorder. I wish those damn

lamps weren't so expensive. Anybody know of a place that sells them for

less that half of my disability check??? Does anyone else experience

confusion and forgetfulness. What about fatigue? I " hit the wall " at

noon and can sleep until the next morning. Please share your advice,

quesitions, experiences, and hope.

I maintain an open heart and an open mind, still have a great sense of

humor (although it's a little warped - but in this country how could it

not be???) and, most of all, I have a very rich inner life. My

spirituality has literally saved my life throughout this journey and

continues to - moment by moment. In closing, I'll share this with you

and really hope some of you will find it in yourselves to respond.

Submission to God's will is the softest pillow on which to

rest.--Unknown

I send my wishes for well-being to all of you in this group. We are

faced with a challenge. Do you know what the Chinese character for the

word " crisis " is? Danger and opportunity. My degree is in Rehab.

Psychology (ironic? Ya think?). And I'm willing to help any of you who

reach out to me. It's important for me to be in contact with this group

and make that promise. Hope to hear from some of you soon.

Peace and well-being,

jamie0916@...

=====================

Posted through Grouply, the better way

to access your like this one.

http://www.grouply.com/?code=post

type_D

[Guest guest]

Hello : Thank you for your post on the Hep C boards. You write

very well and I related to a lot of what you shared.

I'm 54 with Hep C. I'm a Hemophiliac and contracted this disease

through any one of a number of times I received blood and or blood

products.

I've probably had this disease for over 20 years now.

I have early stage cirrhosis and at this time have not been put on

the cocktail treatment. Although I did do interferron a number of

years ago without success. I'm of the genotype that doesn't respond

well.

I also battle with depression. I have struggled with emotional issues

most of my life but the depression over the last few years has

worstened. I've tried the drug merry go round. No of them helped.

I'm married with 3 kids. I'm not sure what I'd do without them in my

life. I really wouldn't want to think about it. I don't think I'd be

on this Planet any longer.

I feel cruddy most of the time. Constant fatigue with aches and

pains. To make things a bit worse I have spinal stenosis, sleep

apnea, and joint problems from bleeds over the years. I take narcotic

pain killers which of course bring their own problems.

The Doctor actually put me on THC in spray form, but I didn't get

anything out of it. Probably could have made a killing on the streets

with the stuff...

I use to be a very spiritual person. My path was along the born again

Christian way. I had a dramatic conversion in my mid 20's and for a

number of years felt so loved by a compassionate Father. My wife and

I dedicated our lives to serving others and doing what we felt God

wanted us to.

Long story short, after getting knocked around by this disease and my

lack of handling it with grace I feel like God had left the building.

I believe in Him......but He's just not a very present help anymore.

I cry alot, I despair alot.........I laugh little. This is not who I

use to be.

Its like my old self died and I've been mourning him ever since.

Running half marathons, working hard, playing lots.........all gone.

I'm on a disibility pension which is a joke. How they expect people

to live on $700.00 a month is beyond me.(Canadian)

I hate the pity I get from people. I feel like crawling into a cave

and closing the entrance off.

For 15 years I've been un-able to work due to the chronic fatigue and

heavy depression.

Your progression into cirrohsis is shocking to say the least. I'm so

sorry to hear of your troubles. I would love to say I believe God is

going to get you out of this..............Oh what the heck I'll say

it anyway........Its not over till its over . God can turn

this around for you and make you a testament of His love and care. I

hope this very much for you.

Thank you for being real, and honest.

Today I have to just see it as a single package of time that in 12

hours or so I can go to be and find temporary relief from my

hopelessness and despair.

All the best and take care of yourself.

[Guest guest]

Hello : Thank you for your post on the Hep C boards. You write

very well and I related to a lot of what you shared.

I'm 54 with Hep C. I'm a Hemophiliac and contracted this disease

through any one of a number of times I received blood and or blood

products.

I've probably had this disease for over 20 years now.

I have early stage cirrhosis and at this time have not been put on

the cocktail treatment. Although I did do interferron a number of

years ago without success. I'm of the genotype that doesn't respond

well.

I also battle with depression. I have struggled with emotional issues

most of my life but the depression over the last few years has

worstened. I've tried the drug merry go round. No of them helped.

I'm married with 3 kids. I'm not sure what I'd do without them in my

life. I really wouldn't want to think about it. I don't think I'd be

on this Planet any longer.

I feel cruddy most of the time. Constant fatigue with aches and

pains. To make things a bit worse I have spinal stenosis, sleep

apnea, and joint problems from bleeds over the years. I take narcotic

pain killers which of course bring their own problems.

The Doctor actually put me on THC in spray form, but I didn't get

anything out of it. Probably could have made a killing on the streets

with the stuff...

I use to be a very spiritual person. My path was along the born again

Christian way. I had a dramatic conversion in my mid 20's and for a

number of years felt so loved by a compassionate Father. My wife and

I dedicated our lives to serving others and doing what we felt God

wanted us to.

Long story short, after getting knocked around by this disease and my

lack of handling it with grace I feel like God had left the building.

I believe in Him......but He's just not a very present help anymore.

I cry alot, I despair alot.........I laugh little. This is not who I

use to be.

Its like my old self died and I've been mourning him ever since.

Running half marathons, working hard, playing lots.........all gone.

I'm on a disibility pension which is a joke. How they expect people

to live on $700.00 a month is beyond me.(Canadian)

I hate the pity I get from people. I feel like crawling into a cave

and closing the entrance off.

For 15 years I've been un-able to work due to the chronic fatigue and

heavy depression.

Your progression into cirrohsis is shocking to say the least. I'm so

sorry to hear of your troubles. I would love to say I believe God is

going to get you out of this..............Oh what the heck I'll say

it anyway........Its not over till its over . God can turn

this around for you and make you a testament of His love and care. I

hope this very much for you.

Thank you for being real, and honest.

Today I have to just see it as a single package of time that in 12

hours or so I can go to be and find temporary relief from my

hopelessness and despair.

All the best and take care of yourself.

[Guest guest]

Hello : Thank you for your post on the Hep C boards. You write

very well and I related to a lot of what you shared.

I'm 54 with Hep C. I'm a Hemophiliac and contracted this disease

through any one of a number of times I received blood and or blood

products.

I've probably had this disease for over 20 years now.

I have early stage cirrhosis and at this time have not been put on

the cocktail treatment. Although I did do interferron a number of

years ago without success. I'm of the genotype that doesn't respond

well.

I also battle with depression. I have struggled with emotional issues

most of my life but the depression over the last few years has

worstened. I've tried the drug merry go round. No of them helped.

I'm married with 3 kids. I'm not sure what I'd do without them in my

life. I really wouldn't want to think about it. I don't think I'd be

on this Planet any longer.

I feel cruddy most of the time. Constant fatigue with aches and

pains. To make things a bit worse I have spinal stenosis, sleep

apnea, and joint problems from bleeds over the years. I take narcotic

pain killers which of course bring their own problems.

The Doctor actually put me on THC in spray form, but I didn't get

anything out of it. Probably could have made a killing on the streets

with the stuff...

I use to be a very spiritual person. My path was along the born again

Christian way. I had a dramatic conversion in my mid 20's and for a

number of years felt so loved by a compassionate Father. My wife and

I dedicated our lives to serving others and doing what we felt God

wanted us to.

Long story short, after getting knocked around by this disease and my

lack of handling it with grace I feel like God had left the building.

I believe in Him......but He's just not a very present help anymore.

I cry alot, I despair alot.........I laugh little. This is not who I

use to be.

Its like my old self died and I've been mourning him ever since.

Running half marathons, working hard, playing lots.........all gone.

I'm on a disibility pension which is a joke. How they expect people

to live on $700.00 a month is beyond me.(Canadian)

I hate the pity I get from people. I feel like crawling into a cave

and closing the entrance off.

For 15 years I've been un-able to work due to the chronic fatigue and

heavy depression.

Your progression into cirrohsis is shocking to say the least. I'm so

sorry to hear of your troubles. I would love to say I believe God is

going to get you out of this..............Oh what the heck I'll say

it anyway........Its not over till its over . God can turn

this around for you and make you a testament of His love and care. I

hope this very much for you.

Thank you for being real, and honest.

Today I have to just see it as a single package of time that in 12

hours or so I can go to be and find temporary relief from my

hopelessness and despair.

All the best and take care of yourself.

[Guest guest]

Hello : Thank you for your post on the Hep C boards. You write

very well and I related to a lot of what you shared.

I'm 54 with Hep C. I'm a Hemophiliac and contracted this disease

through any one of a number of times I received blood and or blood

products.

I've probably had this disease for over 20 years now.

I have early stage cirrhosis and at this time have not been put on

the cocktail treatment. Although I did do interferron a number of

years ago without success. I'm of the genotype that doesn't respond

well.

I also battle with depression. I have struggled with emotional issues

most of my life but the depression over the last few years has

worstened. I've tried the drug merry go round. No of them helped.

I'm married with 3 kids. I'm not sure what I'd do without them in my

life. I really wouldn't want to think about it. I don't think I'd be

on this Planet any longer.

I feel cruddy most of the time. Constant fatigue with aches and

pains. To make things a bit worse I have spinal stenosis, sleep

apnea, and joint problems from bleeds over the years. I take narcotic

pain killers which of course bring their own problems.

The Doctor actually put me on THC in spray form, but I didn't get

anything out of it. Probably could have made a killing on the streets

with the stuff...

I use to be a very spiritual person. My path was along the born again

Christian way. I had a dramatic conversion in my mid 20's and for a

number of years felt so loved by a compassionate Father. My wife and

I dedicated our lives to serving others and doing what we felt God

wanted us to.

Long story short, after getting knocked around by this disease and my

lack of handling it with grace I feel like God had left the building.

I believe in Him......but He's just not a very present help anymore.

I cry alot, I despair alot.........I laugh little. This is not who I

use to be.

Its like my old self died and I've been mourning him ever since.

Running half marathons, working hard, playing lots.........all gone.

I'm on a disibility pension which is a joke. How they expect people

to live on $700.00 a month is beyond me.(Canadian)

I hate the pity I get from people. I feel like crawling into a cave

and closing the entrance off.

For 15 years I've been un-able to work due to the chronic fatigue and

heavy depression.

Your progression into cirrohsis is shocking to say the least. I'm so

sorry to hear of your troubles. I would love to say I believe God is

going to get you out of this..............Oh what the heck I'll say

it anyway........Its not over till its over . God can turn

this around for you and make you a testament of His love and care. I

hope this very much for you.

Thank you for being real, and honest.

Today I have to just see it as a single package of time that in 12

hours or so I can go to be and find temporary relief from my

hopelessness and despair.

All the best and take care of yourself.

[Guest guest]

biopsy isn't all that reliable... it's hit or miss, and can easily miss.

it's happened even when multiple samples were taken the same day just a

couple days before gall bladder surgery where the real condition of the

liver was immediately visually apparent. needle biopsy also has a not

insignificant chance of sending some cancer cells off to metastasize

elsewhere... this happens more often than the docs care to talk about, esp

in the prostate.

if you believe in a higher power then you should have no problem believing

alternative modalities to protect & regenerate the liver and manage the

virus can work. and they can and do, and improve the mental state rather

than damage it (and your body). not nearly so expensive as SOC tx, but out

of pocket for you since no insurance or medicare/medicaid. a couple hundred

$ a month for herbs and extra expense of organic foods, and a LOT of time

spent finding/obtaining what's needed and using it effectively. if you like

chinese thinking, check out dr. q. zhang's hepC philosophy of treatment and

his protocol. also, look into the Beck protocol and home-made colloidal

silver. supplement with alpha lipoic acid & n-acetyl cysteine to enhance

your glutathione production, and maybe get glutathione by injection. also:

selenium, iodine (unless you have a thyroid that reacts badly to it...nbut

it's more likely to improve thyroid), Bcomplex, MSM, E, C,

calcium-magnesium-zinc, cod liver and fish oils. take baths with a cup of

h2o2 3% cheap peroxide in the water. juice or blend both fruits and veges,

and use ozone & /or CSilver to sanitize them first. eat RAW unheated honey,

nuts and goji berries.

after a transplant you're really screwed with the dependency on those drugs.

the new liver will most likely be destroyed by the virus over time unless

you find a way to protect & regenerate the liver and manage the virus... and

then it's only buying time and comfort - which is better than dying a

miserable death sooner than later. there's some trick that's been found to

re-program your immune system to work the the new liver and eliminate the

need for the anti-rejection drugs, but i haven't heard anything more about

it... either it hasn't worked out or more likely most docs don't know of it

or don't know how so htey can't make $ from it... it something like they get

a bit of blood from the liver donor and inject it into your bone marrow.

the chromalux bulbs are indeed pricey, but the GE Reveal line is based on

the same idea and are affordable at any home depot. very nice looking

light. get outside and get sun every day that you can. vit D deficiency

causes SAD and other things. maybe you just don't make your own well from

the sun, and getting it from foods and supplements might help.

> advice wanted re: cirrhosis

>

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at all to

> say that might help.

>

> A little background is necessary. During my training in Grad. School, I

> was inadvertently stuck by used needles by harried nurses. I contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

> out, so they did bloodwork and based upon those results, followed with a

> live biopsy. At that time, I had some minor fibrosis, but due to the

> fact that I also suffer from major depression - recurrent, they wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided to

> do the cocktail. They insisted upon doing it in the hospital - at least

> at the beginning of tx. So, the G.I. tells me that I still have a 50/50

> chance of eradicating the Hep. C., and the hope was that my lliver would

> regenerate. (It was only later that I learned from my current doc. at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever. On the

> Hep. C. But it sure did have an effect on my. I immediately shot to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL happen. " The

> day I made that decision I had the most violent and longest seizure my

> dad has ever seen. (He's seen his share in healthcare.) I eventually

> came out of it and that's when I switched G.I.s who informed me that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

> think there's a bias, since some cirrhostic patients got that way from

> ingesting too much alcohol (another under-treated disease) with a BIG

> ol' stigma attached. For those of you wondering, I haven't had a dring

> since college and I'm 48 y.o. But I digress... Since I cannot take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more importantly,

>

> 2) Tranplantees have to take medication for the rest of their lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

> learned that there are none that will be available for at least eight

> years. But that's only the time it takes to get through the FDA. I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five and

> that I had decades before cirrhosis would devlop. Anyway, again there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what I

> could do. He shrugged and said " well, there's really no 'liver diet',

> but certainly avoid salt.' He is a genius - don't misunderstand me - he

> is a truly wonderful doctor and I feel like I'm in good hands, however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you as

> possible. My depression is, naturally, compounded by this along with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells them for

> less that half of my disability check??? Does anyone else experience

> confusion and forgetfulness. What about fatigue? I " hit the wall " at

> noon and can sleep until the next morning. Please share your advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense of

> humor (although it's a little warped - but in this country how could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We are

> faced with a challenge. Do you know what the Chinese character for the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of you who

> reach out to me. It's important for me to be in contact with this group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>

[Guest guest]

biopsy isn't all that reliable... it's hit or miss, and can easily miss.

it's happened even when multiple samples were taken the same day just a

couple days before gall bladder surgery where the real condition of the

liver was immediately visually apparent. needle biopsy also has a not

insignificant chance of sending some cancer cells off to metastasize

elsewhere... this happens more often than the docs care to talk about, esp

in the prostate.

if you believe in a higher power then you should have no problem believing

alternative modalities to protect & regenerate the liver and manage the

virus can work. and they can and do, and improve the mental state rather

than damage it (and your body). not nearly so expensive as SOC tx, but out

of pocket for you since no insurance or medicare/medicaid. a couple hundred

$ a month for herbs and extra expense of organic foods, and a LOT of time

spent finding/obtaining what's needed and using it effectively. if you like

chinese thinking, check out dr. q. zhang's hepC philosophy of treatment and

his protocol. also, look into the Beck protocol and home-made colloidal

silver. supplement with alpha lipoic acid & n-acetyl cysteine to enhance

your glutathione production, and maybe get glutathione by injection. also:

selenium, iodine (unless you have a thyroid that reacts badly to it...nbut

it's more likely to improve thyroid), Bcomplex, MSM, E, C,

calcium-magnesium-zinc, cod liver and fish oils. take baths with a cup of

h2o2 3% cheap peroxide in the water. juice or blend both fruits and veges,

and use ozone & /or CSilver to sanitize them first. eat RAW unheated honey,

nuts and goji berries.

after a transplant you're really screwed with the dependency on those drugs.

the new liver will most likely be destroyed by the virus over time unless

you find a way to protect & regenerate the liver and manage the virus... and

then it's only buying time and comfort - which is better than dying a

miserable death sooner than later. there's some trick that's been found to

re-program your immune system to work the the new liver and eliminate the

need for the anti-rejection drugs, but i haven't heard anything more about

it... either it hasn't worked out or more likely most docs don't know of it

or don't know how so htey can't make $ from it... it something like they get

a bit of blood from the liver donor and inject it into your bone marrow.

the chromalux bulbs are indeed pricey, but the GE Reveal line is based on

the same idea and are affordable at any home depot. very nice looking

light. get outside and get sun every day that you can. vit D deficiency

causes SAD and other things. maybe you just don't make your own well from

the sun, and getting it from foods and supplements might help.

> advice wanted re: cirrhosis

>

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at all to

> say that might help.

>

> A little background is necessary. During my training in Grad. School, I

> was inadvertently stuck by used needles by harried nurses. I contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

> out, so they did bloodwork and based upon those results, followed with a

> live biopsy. At that time, I had some minor fibrosis, but due to the

> fact that I also suffer from major depression - recurrent, they wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided to

> do the cocktail. They insisted upon doing it in the hospital - at least

> at the beginning of tx. So, the G.I. tells me that I still have a 50/50

> chance of eradicating the Hep. C., and the hope was that my lliver would

> regenerate. (It was only later that I learned from my current doc. at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever. On the

> Hep. C. But it sure did have an effect on my. I immediately shot to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL happen. " The

> day I made that decision I had the most violent and longest seizure my

> dad has ever seen. (He's seen his share in healthcare.) I eventually

> came out of it and that's when I switched G.I.s who informed me that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

> think there's a bias, since some cirrhostic patients got that way from

> ingesting too much alcohol (another under-treated disease) with a BIG

> ol' stigma attached. For those of you wondering, I haven't had a dring

> since college and I'm 48 y.o. But I digress... Since I cannot take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more importantly,

>

> 2) Tranplantees have to take medication for the rest of their lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

> learned that there are none that will be available for at least eight

> years. But that's only the time it takes to get through the FDA. I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five and

> that I had decades before cirrhosis would devlop. Anyway, again there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what I

> could do. He shrugged and said " well, there's really no 'liver diet',

> but certainly avoid salt.' He is a genius - don't misunderstand me - he

> is a truly wonderful doctor and I feel like I'm in good hands, however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you as

> possible. My depression is, naturally, compounded by this along with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells them for

> less that half of my disability check??? Does anyone else experience

> confusion and forgetfulness. What about fatigue? I " hit the wall " at

> noon and can sleep until the next morning. Please share your advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense of

> humor (although it's a little warped - but in this country how could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We are

> faced with a challenge. Do you know what the Chinese character for the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of you who

> reach out to me. It's important for me to be in contact with this group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>

[Guest guest]

biopsy isn't all that reliable... it's hit or miss, and can easily miss.

it's happened even when multiple samples were taken the same day just a

couple days before gall bladder surgery where the real condition of the

liver was immediately visually apparent. needle biopsy also has a not

insignificant chance of sending some cancer cells off to metastasize

elsewhere... this happens more often than the docs care to talk about, esp

in the prostate.

if you believe in a higher power then you should have no problem believing

alternative modalities to protect & regenerate the liver and manage the

virus can work. and they can and do, and improve the mental state rather

than damage it (and your body). not nearly so expensive as SOC tx, but out

of pocket for you since no insurance or medicare/medicaid. a couple hundred

$ a month for herbs and extra expense of organic foods, and a LOT of time

spent finding/obtaining what's needed and using it effectively. if you like

chinese thinking, check out dr. q. zhang's hepC philosophy of treatment and

his protocol. also, look into the Beck protocol and home-made colloidal

silver. supplement with alpha lipoic acid & n-acetyl cysteine to enhance

your glutathione production, and maybe get glutathione by injection. also:

selenium, iodine (unless you have a thyroid that reacts badly to it...nbut

it's more likely to improve thyroid), Bcomplex, MSM, E, C,

calcium-magnesium-zinc, cod liver and fish oils. take baths with a cup of

h2o2 3% cheap peroxide in the water. juice or blend both fruits and veges,

and use ozone & /or CSilver to sanitize them first. eat RAW unheated honey,

nuts and goji berries.

after a transplant you're really screwed with the dependency on those drugs.

the new liver will most likely be destroyed by the virus over time unless

you find a way to protect & regenerate the liver and manage the virus... and

then it's only buying time and comfort - which is better than dying a

miserable death sooner than later. there's some trick that's been found to

re-program your immune system to work the the new liver and eliminate the

need for the anti-rejection drugs, but i haven't heard anything more about

it... either it hasn't worked out or more likely most docs don't know of it

or don't know how so htey can't make $ from it... it something like they get

a bit of blood from the liver donor and inject it into your bone marrow.

the chromalux bulbs are indeed pricey, but the GE Reveal line is based on

the same idea and are affordable at any home depot. very nice looking

light. get outside and get sun every day that you can. vit D deficiency

causes SAD and other things. maybe you just don't make your own well from

the sun, and getting it from foods and supplements might help.

> advice wanted re: cirrhosis

>

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at all to

> say that might help.

>

> A little background is necessary. During my training in Grad. School, I

> was inadvertently stuck by used needles by harried nurses. I contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

> out, so they did bloodwork and based upon those results, followed with a

> live biopsy. At that time, I had some minor fibrosis, but due to the

> fact that I also suffer from major depression - recurrent, they wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided to

> do the cocktail. They insisted upon doing it in the hospital - at least

> at the beginning of tx. So, the G.I. tells me that I still have a 50/50

> chance of eradicating the Hep. C., and the hope was that my lliver would

> regenerate. (It was only later that I learned from my current doc. at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever. On the

> Hep. C. But it sure did have an effect on my. I immediately shot to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL happen. " The

> day I made that decision I had the most violent and longest seizure my

> dad has ever seen. (He's seen his share in healthcare.) I eventually

> came out of it and that's when I switched G.I.s who informed me that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

> think there's a bias, since some cirrhostic patients got that way from

> ingesting too much alcohol (another under-treated disease) with a BIG

> ol' stigma attached. For those of you wondering, I haven't had a dring

> since college and I'm 48 y.o. But I digress... Since I cannot take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more importantly,

>

> 2) Tranplantees have to take medication for the rest of their lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

> learned that there are none that will be available for at least eight

> years. But that's only the time it takes to get through the FDA. I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five and

> that I had decades before cirrhosis would devlop. Anyway, again there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what I

> could do. He shrugged and said " well, there's really no 'liver diet',

> but certainly avoid salt.' He is a genius - don't misunderstand me - he

> is a truly wonderful doctor and I feel like I'm in good hands, however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you as

> possible. My depression is, naturally, compounded by this along with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells them for

> less that half of my disability check??? Does anyone else experience

> confusion and forgetfulness. What about fatigue? I " hit the wall " at

> noon and can sleep until the next morning. Please share your advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense of

> humor (although it's a little warped - but in this country how could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We are

> faced with a challenge. Do you know what the Chinese character for the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of you who

> reach out to me. It's important for me to be in contact with this group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>

[Guest guest]

biopsy isn't all that reliable... it's hit or miss, and can easily miss.

it's happened even when multiple samples were taken the same day just a

couple days before gall bladder surgery where the real condition of the

liver was immediately visually apparent. needle biopsy also has a not

insignificant chance of sending some cancer cells off to metastasize

elsewhere... this happens more often than the docs care to talk about, esp

in the prostate.

if you believe in a higher power then you should have no problem believing

alternative modalities to protect & regenerate the liver and manage the

virus can work. and they can and do, and improve the mental state rather

than damage it (and your body). not nearly so expensive as SOC tx, but out

of pocket for you since no insurance or medicare/medicaid. a couple hundred

$ a month for herbs and extra expense of organic foods, and a LOT of time

spent finding/obtaining what's needed and using it effectively. if you like

chinese thinking, check out dr. q. zhang's hepC philosophy of treatment and

his protocol. also, look into the Beck protocol and home-made colloidal

silver. supplement with alpha lipoic acid & n-acetyl cysteine to enhance

your glutathione production, and maybe get glutathione by injection. also:

selenium, iodine (unless you have a thyroid that reacts badly to it...nbut

it's more likely to improve thyroid), Bcomplex, MSM, E, C,

calcium-magnesium-zinc, cod liver and fish oils. take baths with a cup of

h2o2 3% cheap peroxide in the water. juice or blend both fruits and veges,

and use ozone & /or CSilver to sanitize them first. eat RAW unheated honey,

nuts and goji berries.

after a transplant you're really screwed with the dependency on those drugs.

the new liver will most likely be destroyed by the virus over time unless

you find a way to protect & regenerate the liver and manage the virus... and

then it's only buying time and comfort - which is better than dying a

miserable death sooner than later. there's some trick that's been found to

re-program your immune system to work the the new liver and eliminate the

need for the anti-rejection drugs, but i haven't heard anything more about

it... either it hasn't worked out or more likely most docs don't know of it

or don't know how so htey can't make $ from it... it something like they get

a bit of blood from the liver donor and inject it into your bone marrow.

the chromalux bulbs are indeed pricey, but the GE Reveal line is based on

the same idea and are affordable at any home depot. very nice looking

light. get outside and get sun every day that you can. vit D deficiency

causes SAD and other things. maybe you just don't make your own well from

the sun, and getting it from foods and supplements might help.

> advice wanted re: cirrhosis

>

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at all to

> say that might help.

>

> A little background is necessary. During my training in Grad. School, I

> was inadvertently stuck by used needles by harried nurses. I contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were whacked

> out, so they did bloodwork and based upon those results, followed with a

> live biopsy. At that time, I had some minor fibrosis, but due to the

> fact that I also suffer from major depression - recurrent, they wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided to

> do the cocktail. They insisted upon doing it in the hospital - at least

> at the beginning of tx. So, the G.I. tells me that I still have a 50/50

> chance of eradicating the Hep. C., and the hope was that my lliver would

> regenerate. (It was only later that I learned from my current doc. at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever. On the

> Hep. C. But it sure did have an effect on my. I immediately shot to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL happen. " The

> day I made that decision I had the most violent and longest seizure my

> dad has ever seen. (He's seen his share in healthcare.) I eventually

> came out of it and that's when I switched G.I.s who informed me that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.) Personally, I

> think there's a bias, since some cirrhostic patients got that way from

> ingesting too much alcohol (another under-treated disease) with a BIG

> ol' stigma attached. For those of you wondering, I haven't had a dring

> since college and I'm 48 y.o. But I digress... Since I cannot take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more importantly,

>

> 2) Tranplantees have to take medication for the rest of their lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C. and

> learned that there are none that will be available for at least eight

> years. But that's only the time it takes to get through the FDA. I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five and

> that I had decades before cirrhosis would devlop. Anyway, again there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what I

> could do. He shrugged and said " well, there's really no 'liver diet',

> but certainly avoid salt.' He is a genius - don't misunderstand me - he

> is a truly wonderful doctor and I feel like I'm in good hands, however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you as

> possible. My depression is, naturally, compounded by this along with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells them for

> less that half of my disability check??? Does anyone else experience

> confusion and forgetfulness. What about fatigue? I " hit the wall " at

> noon and can sleep until the next morning. Please share your advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense of

> humor (although it's a little warped - but in this country how could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We are

> faced with a challenge. Do you know what the Chinese character for the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of you who

> reach out to me. It's important for me to be in contact with this group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>

[Guest guest]

Hi ,

So sorry to hear of your hepc nightmare.

I can't take Interferon/Ribavirin either due to a really, really bad

reaction that exacerbated a previously undiagnosed neurological

disease. But my hep doc put me on Ribivirin all by itself, no

Interferon, because he said it could reduce the inflammation,

hopefully slowing the scaring. It worked and I was on it for a year,

but then I started to develop anemia so they took me off that and put

me on a trial for an anti-fibrotic, CTS-1027 by Conatus. So far, 4

weeks in, it is also working, according to my LFT's. Ask your doc

about the Ribavirin, everyone will insist that you shouldn't take it

without the Interferon, but trust me, it works. That might hopefully

give you more time.

My doc is head of the liver transplants at Scripps La Jolla,

California. Don't know where you are but there aren't many liver

specialists that think outside the box, as mine does. It might be a

good idea to spend some time searching for someone that could

actually offer you something to buy you some time. Also, I'd double

check the Interferon after transplant, I bet there is another way to

go. Again, an innovative liver doc might have some other answers for

you. Here is an interesting interview of my doc:

http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_

C/Pockros_interview.pdf

Good Luck,

[Guest guest]

Hi ,

So sorry to hear of your hepc nightmare.

I can't take Interferon/Ribavirin either due to a really, really bad

reaction that exacerbated a previously undiagnosed neurological

disease. But my hep doc put me on Ribivirin all by itself, no

Interferon, because he said it could reduce the inflammation,

hopefully slowing the scaring. It worked and I was on it for a year,

but then I started to develop anemia so they took me off that and put

me on a trial for an anti-fibrotic, CTS-1027 by Conatus. So far, 4

weeks in, it is also working, according to my LFT's. Ask your doc

about the Ribavirin, everyone will insist that you shouldn't take it

without the Interferon, but trust me, it works. That might hopefully

give you more time.

My doc is head of the liver transplants at Scripps La Jolla,

California. Don't know where you are but there aren't many liver

specialists that think outside the box, as mine does. It might be a

good idea to spend some time searching for someone that could

actually offer you something to buy you some time. Also, I'd double

check the Interferon after transplant, I bet there is another way to

go. Again, an innovative liver doc might have some other answers for

you. Here is an interesting interview of my doc:

http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_

C/Pockros_interview.pdf

Good Luck,

[Guest guest]

Hi ,

So sorry to hear of your hepc nightmare.

I can't take Interferon/Ribavirin either due to a really, really bad

reaction that exacerbated a previously undiagnosed neurological

disease. But my hep doc put me on Ribivirin all by itself, no

Interferon, because he said it could reduce the inflammation,

hopefully slowing the scaring. It worked and I was on it for a year,

but then I started to develop anemia so they took me off that and put

me on a trial for an anti-fibrotic, CTS-1027 by Conatus. So far, 4

weeks in, it is also working, according to my LFT's. Ask your doc

about the Ribavirin, everyone will insist that you shouldn't take it

without the Interferon, but trust me, it works. That might hopefully

give you more time.

My doc is head of the liver transplants at Scripps La Jolla,

California. Don't know where you are but there aren't many liver

specialists that think outside the box, as mine does. It might be a

good idea to spend some time searching for someone that could

actually offer you something to buy you some time. Also, I'd double

check the Interferon after transplant, I bet there is another way to

go. Again, an innovative liver doc might have some other answers for

you. Here is an interesting interview of my doc:

http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_

C/Pockros_interview.pdf

Good Luck,

[Guest guest]

Hi ,

So sorry to hear of your hepc nightmare.

I can't take Interferon/Ribavirin either due to a really, really bad

reaction that exacerbated a previously undiagnosed neurological

disease. But my hep doc put me on Ribivirin all by itself, no

Interferon, because he said it could reduce the inflammation,

hopefully slowing the scaring. It worked and I was on it for a year,

but then I started to develop anemia so they took me off that and put

me on a trial for an anti-fibrotic, CTS-1027 by Conatus. So far, 4

weeks in, it is also working, according to my LFT's. Ask your doc

about the Ribavirin, everyone will insist that you shouldn't take it

without the Interferon, but trust me, it works. That might hopefully

give you more time.

My doc is head of the liver transplants at Scripps La Jolla,

California. Don't know where you are but there aren't many liver

specialists that think outside the box, as mine does. It might be a

good idea to spend some time searching for someone that could

actually offer you something to buy you some time. Also, I'd double

check the Interferon after transplant, I bet there is another way to

go. Again, an innovative liver doc might have some other answers for

you. Here is an interesting interview of my doc:

http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_

C/Pockros_interview.pdf

Good Luck,

[Guest guest]

I would advise you to have your blood Ammonia level checked ASAP.

If it is elevated, you may have a mild hepatic encephlopathic thing

going on. This can be dangerous but for some reason is very often

neglected, even by decent MDs. One of the signs is depression.

peace

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent

doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at

all to

> say that might help.

>

> A little background is necessary. During my training in Grad.

School, I

> was inadvertently stuck by used needles by harried nurses. I

contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were

whacked

> out, so they did bloodwork and based upon those results, followed

with a

> live biopsy. At that time, I had some minor fibrosis, but due to

the

> fact that I also suffer from major depression - recurrent, they

wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end

stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the

chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if

you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided

to

> do the cocktail. They insisted upon doing it in the hospital - at

least

> at the beginning of tx. So, the G.I. tells me that I still have a

50/50

> chance of eradicating the Hep. C., and the hope was that my lliver

would

> regenerate. (It was only later that I learned from my current doc.

at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever.

On the

> Hep. C. But it sure did have an effect on my. I immediately shot

to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to

murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL

happen. " The

> day I made that decision I had the most violent and longest seizure

my

> dad has ever seen. (He's seen his share in healthcare.) I

eventually

> came out of it and that's when I switched G.I.s who informed me

that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.)

Personally, I

> think there's a bias, since some cirrhostic patients got that way

from

> ingesting too much alcohol (another under-treated disease) with a

BIG

> ol' stigma attached. For those of you wondering, I haven't had a

dring

> since college and I'm 48 y.o. But I digress... Since I cannot

take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more

importantly,

>

> 2) Tranplantees have to take medication for the rest of their

lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C.

and

> learned that there are none that will be available for at least

eight

> years. But that's only the time it takes to get through the FDA.

I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am

not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five

and

> that I had decades before cirrhosis would devlop. Anyway, again

there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours

from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what

I

> could do. He shrugged and said " well, there's really no 'liver

diet',

> but certainly avoid salt.' He is a genius - don't misunderstand

me - he

> is a truly wonderful doctor and I feel like I'm in good hands,

however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you

as

> possible. My depression is, naturally, compounded by this along

with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells

them for

> less that half of my disability check??? Does anyone else

experience

> confusion and forgetfulness. What about fatigue? I " hit the wall "

at

> noon and can sleep until the next morning. Please share your

advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense

of

> humor (although it's a little warped - but in this country how

could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with

you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We

are

> faced with a challenge. Do you know what the Chinese character for

the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of

you who

> reach out to me. It's important for me to be in contact with this

group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>

[Guest guest]

I would advise you to have your blood Ammonia level checked ASAP.

If it is elevated, you may have a mild hepatic encephlopathic thing

going on. This can be dangerous but for some reason is very often

neglected, even by decent MDs. One of the signs is depression.

peace

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent

doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at

all to

> say that might help.

>

> A little background is necessary. During my training in Grad.

School, I

> was inadvertently stuck by used needles by harried nurses. I

contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were

whacked

> out, so they did bloodwork and based upon those results, followed

with a

> live biopsy. At that time, I had some minor fibrosis, but due to

the

> fact that I also suffer from major depression - recurrent, they

wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end

stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the

chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if

you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided

to

> do the cocktail. They insisted upon doing it in the hospital - at

least

> at the beginning of tx. So, the G.I. tells me that I still have a

50/50

> chance of eradicating the Hep. C., and the hope was that my lliver

would

> regenerate. (It was only later that I learned from my current doc.

at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever.

On the

> Hep. C. But it sure did have an effect on my. I immediately shot

to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to

murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL

happen. " The

> day I made that decision I had the most violent and longest seizure

my

> dad has ever seen. (He's seen his share in healthcare.) I

eventually

> came out of it and that's when I switched G.I.s who informed me

that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.)

Personally, I

> think there's a bias, since some cirrhostic patients got that way

from

> ingesting too much alcohol (another under-treated disease) with a

BIG

> ol' stigma attached. For those of you wondering, I haven't had a

dring

> since college and I'm 48 y.o. But I digress... Since I cannot

take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more

importantly,

>

> 2) Tranplantees have to take medication for the rest of their

lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C.

and

> learned that there are none that will be available for at least

eight

> years. But that's only the time it takes to get through the FDA.

I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am

not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five

and

> that I had decades before cirrhosis would devlop. Anyway, again

there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours

from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what

I

> could do. He shrugged and said " well, there's really no 'liver

diet',

> but certainly avoid salt.' He is a genius - don't misunderstand

me - he

> is a truly wonderful doctor and I feel like I'm in good hands,

however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you

as

> possible. My depression is, naturally, compounded by this along

with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells

them for

> less that half of my disability check??? Does anyone else

experience

> confusion and forgetfulness. What about fatigue? I " hit the wall "

at

> noon and can sleep until the next morning. Please share your

advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense

of

> humor (although it's a little warped - but in this country how

could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with

you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We

are

> faced with a challenge. Do you know what the Chinese character for

the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of

you who

> reach out to me. It's important for me to be in contact with this

group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>

[Guest guest]

I would advise you to have your blood Ammonia level checked ASAP.

If it is elevated, you may have a mild hepatic encephlopathic thing

going on. This can be dangerous but for some reason is very often

neglected, even by decent MDs. One of the signs is depression.

peace

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent

doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at

all to

> say that might help.

>

> A little background is necessary. During my training in Grad.

School, I

> was inadvertently stuck by used needles by harried nurses. I

contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were

whacked

> out, so they did bloodwork and based upon those results, followed

with a

> live biopsy. At that time, I had some minor fibrosis, but due to

the

> fact that I also suffer from major depression - recurrent, they

wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end

stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the

chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if

you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided

to

> do the cocktail. They insisted upon doing it in the hospital - at

least

> at the beginning of tx. So, the G.I. tells me that I still have a

50/50

> chance of eradicating the Hep. C., and the hope was that my lliver

would

> regenerate. (It was only later that I learned from my current doc.

at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever.

On the

> Hep. C. But it sure did have an effect on my. I immediately shot

to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to

murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL

happen. " The

> day I made that decision I had the most violent and longest seizure

my

> dad has ever seen. (He's seen his share in healthcare.) I

eventually

> came out of it and that's when I switched G.I.s who informed me

that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.)

Personally, I

> think there's a bias, since some cirrhostic patients got that way

from

> ingesting too much alcohol (another under-treated disease) with a

BIG

> ol' stigma attached. For those of you wondering, I haven't had a

dring

> since college and I'm 48 y.o. But I digress... Since I cannot

take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more

importantly,

>

> 2) Tranplantees have to take medication for the rest of their

lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C.

and

> learned that there are none that will be available for at least

eight

> years. But that's only the time it takes to get through the FDA.

I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am

not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five

and

> that I had decades before cirrhosis would devlop. Anyway, again

there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours

from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what

I

> could do. He shrugged and said " well, there's really no 'liver

diet',

> but certainly avoid salt.' He is a genius - don't misunderstand

me - he

> is a truly wonderful doctor and I feel like I'm in good hands,

however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you

as

> possible. My depression is, naturally, compounded by this along

with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells

them for

> less that half of my disability check??? Does anyone else

experience

> confusion and forgetfulness. What about fatigue? I " hit the wall "

at

> noon and can sleep until the next morning. Please share your

advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense

of

> humor (although it's a little warped - but in this country how

could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with

you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We

are

> faced with a challenge. Do you know what the Chinese character for

the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of

you who

> reach out to me. It's important for me to be in contact with this

group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>

[Guest guest]

I would advise you to have your blood Ammonia level checked ASAP.

If it is elevated, you may have a mild hepatic encephlopathic thing

going on. This can be dangerous but for some reason is very often

neglected, even by decent MDs. One of the signs is depression.

peace

>

>

> Hi Everyone -

> It's been a while since I've posted, but after a couple of recent

doctor

> visits, I need to reach out to the group for opinions, advice, and

> support. That does not exclude any of you who are not going through

> what I am. I am welcome to hear from anyone who has anything at

all to

> say that might help.

>

> A little background is necessary. During my training in Grad.

School, I

> was inadvertently stuck by used needles by harried nurses. I

contracted

> Hep. C. This was 5 years ago. 3 years ago, my enzyymes were

whacked

> out, so they did bloodwork and based upon those results, followed

with a

> live biopsy. At that time, I had some minor fibrosis, but due to

the

> fact that I also suffer from major depression - recurrent, they

wanted

> to wait a bit before the " cocktail " of interferon and ribarviran.

>

> One year later, I had my second biopsy and had progressed to end

stage

> cirrhosis. I've know this now for a year, but it still flies in the

> face of the normal progression of the disease. As I am sure you all

> know, it normally takes 3 decades or so before one begins to develop

> liver cancer, hepatic encepaphalopathy, or CIRRHOSIS. And the

chances

> of that happening are 1 in 5. So, not only am I very much in that

> unlucky 20%, but I developed end stage cirrhosis in one year - if

you

> consider that the year before, the biopsy did not indicate impending

> cirrhosis. I suppose you could say it took from the time I was

> infected, but even that was a 5 year window for my Hep. C. to become

> Cirrhosis.

>

> At the time that the biopsy showed cirrhosis (severe), they decided

to

> do the cocktail. They insisted upon doing it in the hospital - at

least

> at the beginning of tx. So, the G.I. tells me that I still have a

50/50

> chance of eradicating the Hep. C., and the hope was that my lliver

would

> regenerate. (It was only later that I learned from my current doc.

at

> Mass General in Boston that once you have developed cirrhosis, the

> treatments has only a 5% chance of having any effect whatsoever.

On the

> Hep. C. But it sure did have an effect on my. I immediately shot

to a

> body temp. of 106, stopped eatng, couldn't sleep, attempted to

murder my

> father, attempted suicide and more. After four weeks of the most

> hellish experience of my life, one morning I woke up and thought " I

> can't do this for a year. Just can't. Something bad WILL

happen. " The

> day I made that decision I had the most violent and longest seizure

my

> dad has ever seen. (He's seen his share in healthcare.) I

eventually

> came out of it and that's when I switched G.I.s who informed me

that he

> will NEVER give me that treatment again.

>

> That's the story thus far. Now the questions:

>

> 1) Since my body cannot tolerate " the cocktail " (and by the way, it

> infuriates me that there's only one option here, considering that

> cirrhosis is the 7th leading cause of death in the U.S.)

Personally, I

> think there's a bias, since some cirrhostic patients got that way

from

> ingesting too much alcohol (another under-treated disease) with a

BIG

> ol' stigma attached. For those of you wondering, I haven't had a

dring

> since college and I'm 48 y.o. But I digress... Since I cannot

take the

> only treatment for Hep. C., if I am lucky enough to get a liver or

> portion of a liver transplant, what will stop the Hep. C which still

> rages throughout my body from kiling that liver. But more

importantly,

>

> 2) Tranplantees have to take medication for the rest of their

lives.

> Guess what medication is used for anti-rejection of the liver?

> Interferon and Ribaveron. I went to a seminar on drugs for Hep. C.

and

> learned that there are none that will be available for at least

eight

> years. But that's only the time it takes to get through the FDA.

I've

> tried geting into Hep.C. trials, but because I am cirrrhotic, I am

not a

> candidate for EVERY ONE I've pursued. It just happened so fast, I

> didn't even consider trials -- thinking I'd not be the one of five

and

> that I had decades before cirrhosis would devlop. Anyway, again

there

> is only ONE anti-rejection drug for liver transplantation, as is the

> case with Hep. C. - and, gee, IT'S THE SAME DRUG!

>

> I'm confused, frustrated, and feel doomed. I live about two hours

from

> my G.I. and he doesn't want to see me for a year...I suppose because

> there's nothing he can do. As a proactive person, I asked him what

I

> could do. He shrugged and said " well, there's really no 'liver

diet',

> but certainly avoid salt.' He is a genius - don't misunderstand

me - he

> is a truly wonderful doctor and I feel like I'm in good hands,

however

> useful they may be in my case.

>

> Any questions for me? I'd really like to hear from as many of you

as

> possible. My depression is, naturally, compounded by this along

with

> the fact that I have Seasonal Affective Disorder. I wish those damn

> lamps weren't so expensive. Anybody know of a place that sells

them for

> less that half of my disability check??? Does anyone else

experience

> confusion and forgetfulness. What about fatigue? I " hit the wall "

at

> noon and can sleep until the next morning. Please share your

advice,

> quesitions, experiences, and hope.

>

> I maintain an open heart and an open mind, still have a great sense

of

> humor (although it's a little warped - but in this country how

could it

> not be???) and, most of all, I have a very rich inner life. My

> spirituality has literally saved my life throughout this journey and

> continues to - moment by moment. In closing, I'll share this with

you

> and really hope some of you will find it in yourselves to respond.

>

> Submission to God's will is the softest pillow on which to

> rest.--Unknown

> I send my wishes for well-being to all of you in this group. We

are

> faced with a challenge. Do you know what the Chinese character for

the

> word " crisis " is? Danger and opportunity. My degree is in Rehab.

> Psychology (ironic? Ya think?). And I'm willing to help any of

you who

> reach out to me. It's important for me to be in contact with this

group

> and make that promise. Hope to hear from some of you soon.

>

> Peace and well-being,

>

> jamie0916@...

>

>

>

>

>

> =====================

>

>

> Posted through Grouply, the better way

>

>

> to access your like this one.

>

>

> http://www.grouply.com/?code=post

>

>

>

> type_D

>

>

>