Debi

[Guest guest]

I certainly hope that " real " doc you found does you well. If not

remember to try to help him along by offering to bring him

information. Some are offended by that but most dr's appreciate it

alot!

Please don't thank me. I do this because it is actually good therapy

for me and makes ME feel good doing it! And it keeps me off the

streets! hehehe

LeighAnn

[Guest guest]

In a message dated 8/6/2003 10:22:20 AM Pacific Daylight Time,

clownfire_ak@... writes:

> 8/2/03 203

WHOOOOHOOOO, girlie. You just have a little hop to be in the 100s!

Hugs and blessings, Ann

[Guest guest]

In a message dated 10/30/2003 3:56:35 PM Pacific Standard Time,

clownfire_ak@... writes:

> I have been feeling guilty that I have not updated in a

> while.

Aha! Gotcha...I'm so glad you came out of your quiet corner and updated us

with your wonderful news. You're going to be in the Century Club in the blink

of an eye! (Your shopping craze made me laugh...I have very little

discretionary funds -- as usual, so I have to rely on hand-me-downs, but, if I

had the

money, I would go nuts, too! I just keep reminding myself that our financial

situation has to look up sometime, and that time WILL be in February or March,

after my hernia repair and tummy tuck -- and then I will be a shopping fiend!)

Ahhh, the increased energy -- isn't that just one of the best " perks " that go

along with this? I'm so glad you family is supportive of you and so proud!

You are so skinny, already! What is your ultimate goal (and how tall are

you)? LOL

Thanks for responding to my update plea, Debi!

Hugs and blessings, Ann

[Guest guest]

Correction = Debi's surgery was post- poned.

Bobbe - <102 pounds> If you can dream it... you can do it! God,

give me the dream that you planned for my life. (Don't postpone joy.)

[Guest guest]

Correction = Debi's surgery was post- poned.

Bobbe - <102 pounds> If you can dream it... you can do it! God,

give me the dream that you planned for my life. (Don't postpone joy.)

[Guest guest]

>

> Debi, What is the doctor's name you were telling me about where the

> fill was $200 without flouro? I am wondering where he is located,

> phone number, etc. Does anyone else know this info?

> Who is the dr in TN, ?

>

> Thanks,

> Maggie

Hey Maggie,

The doctor I am seeing is in North Carolina. I have later found out

that unless he has done your surgery he requires you have flouro.

But, he is still rather cheap on his prices. His office charges

$200.00 and the hospital if you pay cash charges $195.00. Still a

deal compared to what I heard alot of you are paying.

His name is Dr. Bouman and phone is 704-786-5700 ( Carolina Weight

Loss Surgery Clinic)

He's a real nice doctor... but not as nice as our Dr. Aceves !! AHAH

[Guest guest]

I'm sorry Maggie this is the doctor in woodstock. I went to see him

this morning. Everything went ok but he had trouble getting into the

port. I saw Karyn. Got to talk to her for a couple of minutes.

Dr. Finley

> 2001 Professional Way (Canton Hwy & 92, back behind KFC)

> Suite 110

> Woodstock, GA 30188

>

> (404) 688-1934 TUESDAYS ONLY

>

> Debi, What is the doctor's name you were telling me about where

the

> fill was $200 without flouro? I am wondering where he is located,

> phone number, etc. Does anyone else know this info?

> Who is the dr in TN, ?

>

> Thanks,

> Maggie

[Guest guest]

In a message dated 6/13/2006 6:35:10 P.M. Central Standard Time, sibemshr2@... writes:

Debi - hang in there, don't quit now. Its easy to get disgusted, but just put your chin up and tell that joint that YOU will win. That being said, with my first knee replacement it took years for me to get a good ROM. I had NO range prior to surgery, and hadn't for years - thus it took soo long for me. Not only that, but muscles, tendons and lord knows what else in there had all basically given up and shrunk or went to lunch from not being used all those years. Now, well, I'm down on hands/knees bending twisting and doing much more than I should be. I was in my early 20's when my knee was replaced. And btw, a recliner is a great knee exerciser.

Wow, early 20's, they just laughed at me when I was 30. Mine started when I was 26 and I finally got some sympathy when I was 44. They had said basically, no way until you are 50. I kept thinking I would sure like to know what it feels like to have good knees while I'm still young enough to enjoy them! I'm so glad that I had it done.

[Guest guest]

Debi - hang in there, don't quit now. Its easy to get disgusted, but just put your chin up and tell that joint that YOU will win. That being said, with my first knee replacement it took years for me to get a good ROM. I had NO range prior to surgery, and hadn't for years - thus it took soo long for me. Not only that, but muscles, tendons and lord knows what else in there had all basically given up and shrunk or went to lunch from not being used all those years. Now, well, I'm down on hands/knees bending twisting and doing much more than I should be. I was in my early 20's when my knee was replaced. And btw, a recliner is a great knee exerciser.

[Guest guest]

It

is very overwhelming at first. Being able to walk away when you need to is

important.

De

Re: Fw:

INFO: Scoring and Staging Hepatitis C and Cirrhosis

This is such good

information.. thank you. I have to read.. walk

away.. come back and try to take it all in.

thank you...so much.

[Guest guest]

Maybe this letter will help. I didn't write it but it captures what I think we all feel.

A Letter To People Without Hepatitis!

Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time; in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That’s all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.

Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, "You just need to push yourself more, exercise harder". Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in

recovery time in days or weeks or months from a single activity.

Also, Hepatitis may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with hepatitis then we'd know about it. This is not a drug-company conspiracy; there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try

it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need your help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me at home and/or whenever I'm hospitalized, then I might not get to see you...and as much as it's possible,

I need you to understand me...

By Bek Oberin

[Guest guest]

I

understand your dilemma. I think you really need to work on her father to get

him to understand the seriousness of her disease. Maybe then he will put more

effort into being available to her. Does she have any friends there that could

go with her to the doc?

De

Re: drug assistance - Hi Debi from Deb

I live over 200 miles

away and it's hard for me to take off. I went

when she had the biopsy and was told I'd have some time with the

doctor then but he left without talking to me. I asked her father to

go with her for the results but he couldn't get off work either. I'm

going to plan around her next visit and try to make it.It gets

complicated because I adopted her daughter and am a mom again. So

it's not only taking off from work but also from school.

I have autoimmune hepatitis, not anything like what this group is

dealing with but I have a clue as to what hepatitis feels like. I

know when I was first diagnoised I took my best friend with me. I

knew I wouldn't think of everything to ask or remember what I was

told. I also have done the copies of all lab and pathology reports

..

[Guest guest]

Daily

shots is probably Infergen which is still a Peg Interferon, just a slightly different

chemical makeup. They usually use that for people who have not responded to

the other treatments.

As

I just mentioned, only about half my hair came out, but only in patches &

not all at once, so it wasn’t real obvious. When it did come back, it is

stark white. Go to the photo group and look at some of my pics. The white

part of my hair is all that fell out. The dark part never did. I don’t

know if the daily shots will be harsher on the hair or not.

De

Re: JON!

I'm watching the comments

on tx and curious. My daughter just started

tx last week and I thought it was Peg but she has a shot a day and

some pills. First couple of days was fine but as of yesterday she was

very ill, couldn't even talk on the phone. Is this normal? And she was

told she could lose her hair and we thought that meant it would thin

out. (She has very, very thick curly hair) do they mean she could lose

it all? Just needing to clarify some of this for myself.

Thanks everyone,

debi (the newbie)

[Guest guest]

De, I just spoke to my ex and he states that she's doing weekly shots,

not daily. I was wrong. Does that make any difference or will the

treatment still be as harsh? She's very sick right now.

Debi

[Guest guest]

Hi debi,

The two kinds of weekly treatments I know about are Peg Interferon by Schering Plough company and Pegasys by Roche labs. See if you can find out which one she is on.

Pegasys is generally reported to be a little less harsh, but they are both a shot and daily pills of Ribavirin or Rebetol depending on which company they are made by.

I have treated with Pegasys and I had very long wavy hair and it did thin, but did not fall out. I did cut it short though. Every person responds a little different.

One thing is for sure. Make sure she is drinking a lot of water every day. It is important to flush out the system. There is a formula for how much one should drink. Maybe someone here knows it. I drank about a gallon a day.

Re: Debi

De, I just spoke to my ex and he states that she's doing weekly shots, not daily. I was wrong. Does that make any difference or will the treatment still be as harsh? She's very sick right now.Debi

[Guest guest]

Six large glasses of water a day should keep her flushed out so that treatment isn't as harsh on her.I remember one of our members went on a treatment that was a shot every day and pills.It was still in trials at the time .The girl got quite sick from it but it was supposed to be a 12 or 16 wk treatment.It was in this group.

Gail

Re: Debi

De, I just spoke to my ex and he states that she's doing weekly shots, not daily. I was wrong. Does that make any difference or will the treatment still be as harsh? She's very sick right now.Debi

[Guest guest]

I have heard of interferon used on daily basis but not as dual treatment with pills.Single shot every day is maintenance.

Gail

RE: Re: Debi

Daily shots is probably Infergen which is still a Peg Interferon, just a slightly different chemical makeup. They usually use that for people who have not responded to the other treatments.

As I just mentioned, only about half my hair came out, but only in patches & not all at once, so it wasn’t real obvious. When it did come back, it is stark white. Go to the photo group and look at some of my pics. The white part of my hair is all that fell out. The dark part never did. I don’t know if the daily shots will be harsher on the hair or not.

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of debi_inaustinSent: Saturday, October 14, 2006 9:30 AMHepatitis CSupportGroupForDummies Subject: Re: JON!

I'm watching the comments on tx and curious. My daughter just started tx last week and I thought it was Peg but she has a shot a day and some pills. First couple of days was fine but as of yesterday she was very ill, couldn't even talk on the phone. Is this normal? And she was told she could lose her hair and we thought that meant it would thin out. (She has very, very thick curly hair) do they mean she could lose it all? Just needing to clarify some of this for myself.Thanks everyone,debi (the newbie)

[Guest guest]

The formula is 1 ounce of water per pound of body weight.

Re: Debi

De, I just spoke to my ex and he states that she's doing weekly shots, not daily. I was wrong. Does that make any difference or will the treatment still be as harsh? She's very sick right now.Debi

[Guest guest]

CORRECTION

It's 1 ounce per pound of HALF your body weight.

DUH

Re: Debi

De, I just spoke to my ex and he states that she's doing weekly shots, not daily. I was wrong. Does that make any difference or will the treatment still be as harsh? She's very sick right now.Debi

[Guest guest]

Last question for the night, what is the normal time span for the

first round of treatment? weeks.. months..?? I called and told her to

drink the formual of water to weight. WOW.. for me that would be lots

of water!!

Thanks everyone,

Debi in Austin

[Guest guest]

Gail,

you are wrong on the dual treatment,, my hubby is a relapsing responder and

was put on infergon shots once a day with the pills 6 of them once a day too

,

I have heard of interferon used on daily basis but not as dual treatment with pills.Single shot every day is maintenance.

Gail

RE: Re: Debi

Daily shots is probably Infergen which is still a Peg Interferon, just a slightly different chemical makeup. They usually use that for people who have not responded to the other treatments.

As I just mentioned, only about half my hair came out, but only in patches & not all at once, so it wasn’t real obvious. When it did come back, it is stark white. Go to the photo group and look at some of my pics. The white part of my hair is all that fell out. The dark part never did. I don’t know if the daily shots will be harsher on the hair or not.

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of debi_inaustinSent: Saturday, October 14, 2006 9:30 AMHepatitis CSupportGroupForDummies Subject: Re: JON!

I'm watching the comments on tx and curious. My daughter just started tx last week and I thought it was Peg but she has a shot a day and some pills. First couple of days was fine but as of yesterday she was very ill, couldn't even talk on the phone. Is this normal? And she was told she could lose her hair and we thought that meant it would thin out. (She has very, very thick curly hair) do they mean she could lose it all? Just needing to clarify some of this for myself.Thanks everyone,debi (the newbie)

[Guest guest]

Debi

it depends on what treatment you are on, the first time around for my husband

was 1 shot a week with 6 pills once a day for 48 weeks

the second time around ( he is a responding relapser) is one shot a day, instead of 1 a week, with

6 pills once a day, but you go for 48 weeks after you are 0 on your viral

load,, that is he doesn't start to count the 48 weeks till he is at zero on his

viral load which he finely got to after 10 weeks which means he will be on the

treatment for 58 weeks, just over a year

Bonnie

Last question for the night, what is the normal time span for the first round of treatment? weeks.. months..?? I called and told her to drink the formual of water to weight. WOW.. for me that would be lots of water!! Thanks everyone,Debi in Austin

[Guest guest]

>

> 48 weeks for some and 52 for others...

I had no idea it was that long.

Thanks everyone.

deb

[Guest guest]

Thank you for the information,that is the first time I have heard of that.Have a great night.

Gail

RE: Re: Debi

Daily shots is probably Infergen which is still a Peg Interferon, just a slightly different chemical makeup. They usually use that for people who have not responded to the other treatments.

As I just mentioned, only about half my hair came out, but only in patches & not all at once, so it wasn’t real obvious. When it did come back, it is stark white. Go to the photo group and look at some of my pics. The white part of my hair is all that fell out. The dark part never did. I don’t know if the daily shots will be harsher on the hair or not.

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of debi_inaustinSent: Saturday, October 14, 2006 9:30 AMHepatitis CSupportGroupForDummies Subject: Re: JON!

I'm watching the comments on tx and curious. My daughter just started tx last week and I thought it was Peg but she has a shot a day and some pills. First couple of days was fine but as of yesterday she was very ill, couldn't even talk on the phone. Is this normal? And she was told she could lose her hair and we thought that meant it would thin out. (She has very, very thick curly hair) do they mean she could lose it all? Just needing to clarify some of this for myself.Thanks everyone,debi (the newbie)

[Guest guest]

Do they reduce the strength of the shot with it being done everyday and it is new that they don't count the 48wks until you have no viral load.I think this is better because treatment has a better chance of killing the virus.I am learning lots tonight.

Gail

Re: Re: Debi

Debi

it depends on what treatment you are on, the first time around for my husband

was 1 shot a week with 6 pills once a day for 48 weeks

the second time around ( he is a responding relapser) is one shot a day, instead of 1 a week, with

6 pills once a day, but you go for 48 weeks after you are 0 on your viral

load,, that is he doesn't start to count the 48 weeks till he is at zero on his

viral load which he finely got to after 10 weeks which means he will be on the

treatment for 58 weeks, just over a year

Bonnie

Last question for the night, what is the normal time span for the first round of treatment? weeks.. months..?? I called and told her to drink the formual of water to weight. WOW.. for me that would be lots of water!! Thanks everyone,Debi in Austin