Hello, I'm New Here

[Guest guest]

Hi Kerry & Welcome, I hope that you only have the antibodies and no active

virus. I " had " hep b and developed antibodies to fight it off, the hep c

however has caught up with me. I too am 41 yrs old. I've never been yellow or

had elevated liver enzymes until I went to the dermatologist due to

breakouts. They checked my liver enzymes and for the first time they were

elevated a bit. I was referred out to a " specialist " and he ran all sorts of

tests and found out that I was indeed positive for Hep C.

I ignored it for 2 years and got to the point where I was tired all of the

time and KNEW that it was time to check it out again. This time I did go on

combo (Interferon/Ribivirin) treatment.

I would have a PCR test done just to be sure, in the mean time take care of

yourself and keep us posted on your progress. I wish you well Janet Ps.

As far as I can figure I came in contact with the virus about 20 yrs ago.

[Guest guest]

Kerry, you sound like me. I haven't had a drink in over 8 yrs either. I used

street drugs 20 yrs ago, had 2 c-sections (emergency) and received blood. Who

knows. Anything could've happened. Neither of my children test positive for

the virus or antibodies and have of course been vaccinated for A & B.

My current husband (5yrs) and my ex both test negative. If you want to email

me directly feel free to do so. What part of the world do you live in? I'm in

Texas, the Dallas area. Janet jlyjan@...

[Guest guest]

<< Hi Kerry

It's good you're paying attention to the net, so much info is updated daily

that not even the good doctors can keep up! Most patients I talk with have

submitted info to their doctors one time or another about various subjects

relating to Hepatitis.

I wanted to relay a message to you and others on the list...

During a recent seminar on Hepatitis C, in Tucson, there were many

discussions on the topic of " normal enzymes " and patient disease progression.

You can have perfect ALT levels, and your liver functions can be within

normal range and still be sick with stage 3 and 4 cirrhosis. In fact a

leading transplant surgeon stated that it isn't totally unusual to have

patients on the transplant list, or actual patients receiving pre-transplant

Meds to have good and acceptable liver function numbers.

The liver is such a fascinating organ, that it can reroute blood vessels and

bypass sections and work at putting out the correct enzymes.

In their expert opinion (and they have been treating Hepatitis patients for

dozens of years) they tell EVERY Hepatitis C patient to have the following...

A viral load count

A genotyping of the HCV

A liver biopsy

Only using all three of these tools are they able to accurately get an idea

of the patients liver damage and working condition.

By the way, if any doctor tells you not to worry.... that's the time to

worry! Your " gall bladder attacks " are a symptom of Hepatitis C.

In a recent study done of over 3000 Hepatitis C patients, 68% had gall

bladder pains. Now it was found that not all gall bladder pains were a

result of gall stones (which is the main reason for pain in that region) or

even gall bladder disease.

42% of these patients had undergone gall bladder removal surgery.

The pain is sometimes mistaken for the gall bladder because of it's proximity

to the liver. Many patients complain of this pain, upper right quadrant, yet

it is undoubtedly a symptom of Hepatitis.

The study gave no specific pain origin, other than to say it was unusual for

the large number of patients to have this problem. The general population

numbers on gall bladder removal is much lower that the Hepatitis C patients.

6% compared to the 68%. So it doesn't take a brick wall to fall before we

get the correlation.

So where are you in the world? Glad to have you here!

Sharon Nicholson

Hepatitis Education & Patient Coalition (H. E. P. C.)

Executive Director

<A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B,

C's - editor Suite101.com</A>

http://www.suite101.com/welcome.cfm/hepatitis_abc

Join our e-group mailing list online!

<A HREF= " /group/ArizonaHepatitis C " >eGroups :

ArizonaHepatitis C</A>

/group/ArizonaHepatitis C

[Guest guest]

Thanks Sharon!!!!!!!!!!!! Janet

[Guest guest]

Ps. Sharon, I have had all of the test that you mentioned and I should've

mentioned them all to Kerry. The genotype and biopsy came much later after my

diagnosis. Good info! Janet

[Guest guest]

Welcome Kerry, the Doctor you went to was he a specialist? Medical Doctor's

don't know as much as the specialist's. My Children also had the hep-b shots.

My husband has hep-c was told in August of 99. He isn't a candidate for the

treatments though. I want to wish you luck, I have never heard of hep-c

disappearing without treatments???? Take Care, Irish

[Guest guest]

Hi Kerry and welcome! Hope all continues to go well for you and your

daughter. I also feel pretty good and that tends to make me " forget " for a

while that I have a really devastating disease. Don't let it go.... (I

should talk!!) Take care!

[Guest guest]

Kerry, the way this disease comes to us is still questionable. But they say

shared needles, drugs,drinking,tatoos,multiple sex partners,transfusions,even

shared razors. That's to name a few. My husband shared a needle over 40 years

ago, had tattoos and drank, but he also worked as an EMT where there was lots

of open sores and, etc., so who's to say for sure. I hope you get the pcr

test done, it is important. Take Care,Irish

[Guest guest]

Thanks for all the info Sharon

[Guest guest]

Kerry, I want to wish you luck. Just to give you some background, MY husband

went to the ER last July for prostrate trouble and they took blood for tests

and that's how he found out he had Hep-C. He had all the symptoms for a few

years but we kept saying it was his work load, his getting

older,arthritis,etc... This disease is really baffling to many even Doc's.

That's why it is so important to tell the DR.'S all that you feel. Then to

ask for the tests too. If you have coverage you are lucky many of us don't

including my Husband. So I am fighting for that now. I don't say this to

scare you but only to help you so please take it as I mean it OK?? This is a

good group with lots of info and caring. Take Care, Irish

[Guest guest]

Kerry, I am glad you found us too. Keep looking for answers and asking

questions. Go with your instincts, especially since you have a nursing

background. First things first, the blood work all the proper blood work. Go

to the sites Sharon sent, and check them out there is good info there. Take

Care and God Bless you and your family. Irish

[Guest guest]

Hi Janet

Thanks for writing so fast. I will ask my doctor about a PCR test when I go

in next month. Funny how you mention tired...I am tired all the time. But

then again, 2 jobs and a 6 year old, it might be normal.

I'm not sure where I got Hepatitis. I worked as an RN in Tucson for 5 years,

and worked with a lot of sick people from Mexico. I am also recovering

alcoholic and addict. I haven't used street drugs since the late 70's. I

have not had a drink for it will be 8 years this coming August. Guess I

could have gotten it anywhere. I'm so relieved my daughter doesn't have it.

Again, thanks for writing, I have learned something new already.

Kerry

[Guest guest]

What part of the world do you live in? I'm in

Texas, the Dallas area. Janet jlyjan@...

I'm in Minnesota, Apple Valley, suburb of St.. Thanks for the offer of

writing in private. I have your email address, and will do just that, after

I get this house settled here for the night.

Thanks,

Kerry

[Guest guest]

Hi Sharon

Wow, you sure sound educated on this topic. Thanks for the info, I am

printing it to show my doctor. I just got new insurance, so will be going to

a new internist next month for a physical.

I really haven't worried much about this diagnosis until recently when I did

start to search the net. More for the message board I'm moderating than for

me. Because the doctor I had previously said I didn't have to worry. Even

though he said that, I have made a point to be very kind to my liver. For

example, no tylenol or drinking, as well as checking out other things for

how liver friendly they are before taking them, meds etc.

I am anxious to have the tests you list run, to make sure that I am okay. Is

that possible? To be okay? Sheesh, now I have a ton more questions.

I live in Minnesota now, but did live in Tucson for 5 years from 88-the end

of 92.

Thanks again for the info. I'm glad I joined this list.

Kerry

[Guest guest]

Thanks Irish....gosh, I need to get this straightened out now. No, the

doctor who told me I was fine was a family practice doc. I am going to look

into this more for sure.

Thanks

Kerry

[Guest guest]

Irish, and everyone;

I'm a bit overwhelmed at all of your kindness to a new person to your list.

I've been taking notes, and plan to ask my doctor about all of this. I am

thinking I will ask for a referral to a hepatologist (right term?) as well,

just to be safe. Someone on another one of my lists (not hepatitis related)

said once that if you do not have symptoms, don't have the biopsy. They felt

it would stir things up, and make you sicker. Now, my nursing background

tells me that is not accurate info, but it is a scary thought. There is so

little information out there, or rather, it seems that the doctors I've seen

so far weren't really well versed on this disease. I'm very glad I found you

all.

Kerry

[Guest guest]

Merrill, Have a safe trip, Janet

[Guest guest]

Good Luck Merril

[Guest guest]

Kerry...

Hi...and welcome...(dubious distinction, I fear..)

I have been follwoingyour posts for a couple of days, but been getting

ready for a trip to Cleveland for a mitochondrial disorder conference,

so I have little time atthe moment, tho I'd like to get to know you

better when I return!!

In the meantime, be careful and don't let any doc talk you into anything

until you do have time to evaluate from all angles. I have just decided

to refuse the biopsy and treatment, but there are many factors to

condifer with my medical history. Would be glad to share my reasoning

with you after June 5. So, if you can hold off till then, I think I can

add some pieces to your knowledge.

Hope you feel well at this point. This a great group that can offer

many diverse ideas based on personal experience. Whether or not any two

people agree, it is so very helpful to have real life stories to use as

a basis for any decision.

So, thanks to all for offering their experiences, I will be on digest

until the 5th, but will try to catch up as soon as possible after that.

If there is something that you want me to read FIRST when I get back,

please send off-list since I am sure I will leave the digests till after

I catch up on the personal posts!!!

Take care all.....

Merril

[Guest guest]

In a message dated 5/28/00 11:02:24 PM Eastern Daylight Time,

irishladi26@... writes:

Kerry, the way this disease comes to us is still questionable. But they say

shared needles, drugs,drinking,tatoos,multiple sex

partners,transfusions,even

shared razors. That's to name a few. My husband shared a needle over 40

years

ago, had tattoos and drank, but he also worked as an EMT where there was

lots

of open sores and, etc., so who's to say for sure.

******

I`m not on disability, although I wish I were..but I have a lot of friends

who are, and from what I understand, the government has cut out, any

disability claims, from people who have drug/alcohol problems, or a disease

which was caused from drugs/alcohol. So, I don`t think I would mention the

part about the drugs to anyone. After all, HOW we got the disease isn`t

really important today..the only thing, is how we can live with it. We are

ALL innocent victims of a horrible dragon.

Well Wishes,

debmc

[Guest guest]

Sorry to say but I have material here at my home from the Medical Assistance

program that states drug/alcohol abuse is a qualified emergency for help with

money and rehab and shelters...This is not why I wrote it. I wrote it because

if they can receive help why shouldn't others??? I am not concerned on how

anyone got this disease and don't mean to say it matters after all if you

have it you have it, where it came from doesn't matter unless you can get

union help for coverage depending on the job you have. Case in point if you

worked in the Medical profession and contacted it from that and can prove it

then they are responsible for the damages... Proven fact. But trying to prove

this is very hard. Not everyone who has this disease has contacted it from

drugs/alcohol. My point on this is WE ALL NEED HELP AND SHOULD NOT BE

DISCARDED. There aren't enough people in the right places to help us for they

don't know about this. The more that know the better chance We have in

getting the help we need right?? I don't mean to offend anyone and sure hope

I didn't. Irish:)

[Guest guest]

I agree with everything you said Irish.

I only hope that the word is getting around about how to get help. I guess

it starts with everyone doing their part to help their neighbor, friend etc.

Good news travels fast.

Bob Simons

Sr. Commander

Royal Rangers

Tucson, Az.

bsimons@...

http://abbacomputers.homepage.com/bob.htm

For I know the plans I have for you, " declares the LORD, " plans to prosper

you and not to harm you, plans to give you hope and a future. Jer 29:11

(NIV)

Re: Hello, I'm new here

> Sorry to say but I have material here at my home from the Medical

Assistance

> program that states drug/alcohol abuse is a qualified emergency for help

with

> money and rehab and shelters...This is not why I wrote it. I wrote it

because

> if they can receive help why shouldn't others??? I am not concerned on how

> anyone got this disease and don't mean to say it matters after all if you

> have it you have it, where it came from doesn't matter unless you can get

> union help for coverage depending on the job you have. Case in point if

you

> worked in the Medical profession and contacted it from that and can prove

it

> then they are responsible for the damages... Proven fact. But trying to

prove

> this is very hard. Not everyone who has this disease has contacted it from

> drugs/alcohol. My point on this is WE ALL NEED HELP AND SHOULD NOT BE

> DISCARDED. There aren't enough people in the right places to help us for

they

> don't know about this. The more that know the better chance We have in

> getting the help we need right?? I don't mean to offend anyone and sure

hope

> I didn't. Irish:)

>

> ------------------------------------------------------------------------

> Best friends, most artistic, class clown Find 'em here:

> 1/4054/10/_/96144/_/959705185/

> ------------------------------------------------------------------------

>

>

>

[Guest guest]

In a message dated 5/30/00 12:48:41 PM Eastern Daylight Time,

irishladi26@... writes:

<<

Sorry to say but I have material here at my home from the Medical Assistance

program that states drug/alcohol abuse is a qualified emergency for help

with

money and rehab and shelters. >>

************

This is very true.....but not true for disability and/or SSI. I`ll do some

research and get it to you.

Love, and well wishes,

debmc

[Guest guest]

THANKS FOR THE REPLY TO MY POST. I CONSIDER MYSELF MOST FORTUNATE THAT I HAVE NOT HAD ANY TYPE OF SPINAL SURGERY YET.I AM FACING A FUSION IN MY NECK AS I SAID IN MY LAST POST. I AM NOT TOO THRILLED AT THAT AT ALL.

IT IS SO GOOD TO HEAR FROM SOMEONE WHO IS ABLE MANAGE THEIR PAIN WITH MOTRIN AND EXCEDRIN .{EVEN IF IT IS ONLY 50 PERCENT OF THE TIME} I HAVE HAD TO TAKE THE HEAVY PAIN KILLERS FOR SO LONG THAT I HAVE FORGOTTEN WHAT IT'S LIKE NOT TO HAVE TO DO SO.

OH,BY THE WAY,WELCOME TO THE GROUP.

TAKE CARE,AND GOOD LUCK WITH YOUR REHAB FROM THE SURGERY.

LARRY

Diane & Dallas <ftrotter@...> wrote:

Larry,

I know you were not making light of my post. And, yes the 50% of the time the Motrin and Excedrin help, but I still consider myself fortunate. No back surgery is pleasant, and there are big hurdles for mostly everyone who have it.

Hope your pain improves, only someone who has been there can understand where you are.

Diane

Re: Hello, I'm new here

HELLO

WELL,I DON'T MEAN TO MAKE LIGHT OF YOUR POST ,BUT IF I COULD GET BY WITH JUST HAVING TO TAKE 800MG OF MOTRIN AND SOMETIMES EXCEDRIN FOR PAIN I THINK THAT I WOULD BE IN HOG HEAVEN.{BUT THAT'S JUST ME} FROM WHAT YOU SAID IT SOUNDS TO ME LIKE YOU ARE IN GOOD SHAPE ,PAIN MANAGEMENT WISE.

SORRY I CAN'T HELP YOU MORE THAN THAT, MAYBE SOMEONE ELSE CAN.

LARRYDiane & Dallas <ftrotter@...> wrote:

Hi,

I am new to the group, and have been looking for a group or chat where I could find out more about back surgery and how to strengthen my back afterward.

I had a fusion last March, the whole lumbar, and the one just above the lumbar. Six in all. I was in a cast for 4 months and had just begun physical therepy, when I had a ruptured colon, and had to have emergency for that. Things have never gotten back to where I was before the second surgery. The back surgeon told me not to do any more exercise, the surgeon that operated on my colon told me that I could exercise. Of course I was really confused by the two of them. So I listened to the back surgeon and quit my exercising. Well, from there (since September) I stopped doing mostly everything, especially if my back hurt in any way. I believe that I was being overly cautious. Consequently, I ended up in a deep depression, which developed into panic attacks, I was a real mess. I am a very active person and the frustration was unblievable. Whenever I had a problem I would call one of the surgeons, and which ever

one I called, he would tell me that it was probably something that I should talk to the other one about. Talk about being confused.

I finally went to my general practioner, and he said that I was on overload, to say the least. He put me on medication and things are getting better emotionally.

Now I have decided that excersice is the best thing I could be doing, so I have started walking again, also doing some floor exercises.

I'm wondering what others do to get the back strong again to get rid of some of the pain. The weakest part seems to be right in the small of my back. I hope to get at least somewhat pain free someday, but I'm also wondering just how long it takes. The only med's I am on right now for my back is Motrin (800mg), and occasionally Excedrin.

Any discussion or help someone could give me would be most welcome.

Diane

D and D AcresHome of " Star Struck"Son of "Cast Iron Camelot"

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

[Guest guest]

THANKS FOR THE REPLY TO MY POST. I CONSIDER MYSELF MOST FORTUNATE THAT I HAVE NOT HAD ANY TYPE OF SPINAL SURGERY YET.I AM FACING A FUSION IN MY NECK AS I SAID IN MY LAST POST. I AM NOT TOO THRILLED AT THAT AT ALL.

IT IS SO GOOD TO HEAR FROM SOMEONE WHO IS ABLE MANAGE THEIR PAIN WITH MOTRIN AND EXCEDRIN .{EVEN IF IT IS ONLY 50 PERCENT OF THE TIME} I HAVE HAD TO TAKE THE HEAVY PAIN KILLERS FOR SO LONG THAT I HAVE FORGOTTEN WHAT IT'S LIKE NOT TO HAVE TO DO SO.

OH,BY THE WAY,WELCOME TO THE GROUP.

TAKE CARE,AND GOOD LUCK WITH YOUR REHAB FROM THE SURGERY.

LARRY

Diane & Dallas <ftrotter@...> wrote:

Larry,

I know you were not making light of my post. And, yes the 50% of the time the Motrin and Excedrin help, but I still consider myself fortunate. No back surgery is pleasant, and there are big hurdles for mostly everyone who have it.

Hope your pain improves, only someone who has been there can understand where you are.

Diane

Re: Hello, I'm new here

HELLO

WELL,I DON'T MEAN TO MAKE LIGHT OF YOUR POST ,BUT IF I COULD GET BY WITH JUST HAVING TO TAKE 800MG OF MOTRIN AND SOMETIMES EXCEDRIN FOR PAIN I THINK THAT I WOULD BE IN HOG HEAVEN.{BUT THAT'S JUST ME} FROM WHAT YOU SAID IT SOUNDS TO ME LIKE YOU ARE IN GOOD SHAPE ,PAIN MANAGEMENT WISE.

SORRY I CAN'T HELP YOU MORE THAN THAT, MAYBE SOMEONE ELSE CAN.

LARRYDiane & Dallas <ftrotter@...> wrote:

Hi,

I am new to the group, and have been looking for a group or chat where I could find out more about back surgery and how to strengthen my back afterward.

I had a fusion last March, the whole lumbar, and the one just above the lumbar. Six in all. I was in a cast for 4 months and had just begun physical therepy, when I had a ruptured colon, and had to have emergency for that. Things have never gotten back to where I was before the second surgery. The back surgeon told me not to do any more exercise, the surgeon that operated on my colon told me that I could exercise. Of course I was really confused by the two of them. So I listened to the back surgeon and quit my exercising. Well, from there (since September) I stopped doing mostly everything, especially if my back hurt in any way. I believe that I was being overly cautious. Consequently, I ended up in a deep depression, which developed into panic attacks, I was a real mess. I am a very active person and the frustration was unblievable. Whenever I had a problem I would call one of the surgeons, and which ever

one I called, he would tell me that it was probably something that I should talk to the other one about. Talk about being confused.

I finally went to my general practioner, and he said that I was on overload, to say the least. He put me on medication and things are getting better emotionally.

Now I have decided that excersice is the best thing I could be doing, so I have started walking again, also doing some floor exercises.

I'm wondering what others do to get the back strong again to get rid of some of the pain. The weakest part seems to be right in the small of my back. I hope to get at least somewhat pain free someday, but I'm also wondering just how long it takes. The only med's I am on right now for my back is Motrin (800mg), and occasionally Excedrin.

Any discussion or help someone could give me would be most welcome.

Diane

D and D AcresHome of " Star Struck"Son of "Cast Iron Camelot"

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT