Stages

November 19, 1999

,

Sounds right to me. My biopsy report shows cirrhosis stage IV on a scale

of I to IV, but I wonder if stage V means total liver failure? I don't

know for sure, but obviously, I didn't have total liver failure because I'm

still here. Still, from the medical attention I got at the time, I don't

think they thought I could make it. I read something somewhere that said

that we can survive up to 80% loss of liver function but after that, it's

either a transplant or that's all she wrote. That seems to tie in with the

stage V concept.

Take care,

Geri

February 9, 2003

thanks terry, love and healing from anita

>

> From: " autohep <dohr@...> " <dohr@...>

> Date: Sun 09/Feb/2003 21:49 GMT

>

> Subject: [ ] Stages

>

> Hi! Need help in understanding the stages. I know there are 3

> types of hep. but how do you get to the different stages. Is it the

> higher your alt goes, and does anyone know where the lines are drawn.

>

> Jerry - thank you from recommending the book by Worman, I've just

> gotten it and it's very informative.

>

> Anita - I couldn't take Imuran because it made me very sick to my

> stomach and vomitted. Your " friends " don't understand autoimmune

> they just hear hep. I've had the same problems and try to explain to

> them I only hurt myself. Then I tell them that I'm unique and not to

> worry I won't share even if I could.

>

> Tony - Have a good rest and may your pain lesson. God Bless.

>

> Thanks everyone for being here, your in my prayers. terri

>

February 9, 2003

thanks terry, love and healing from anita

>

> From: " autohep <dohr@...> " <dohr@...>

> Date: Sun 09/Feb/2003 21:49 GMT

>

> Subject: [ ] Stages

>

> Hi! Need help in understanding the stages. I know there are 3

> types of hep. but how do you get to the different stages. Is it the

> higher your alt goes, and does anyone know where the lines are drawn.

>

> Jerry - thank you from recommending the book by Worman, I've just

> gotten it and it's very informative.

>

> Anita - I couldn't take Imuran because it made me very sick to my

> stomach and vomitted. Your " friends " don't understand autoimmune

> they just hear hep. I've had the same problems and try to explain to

> them I only hurt myself. Then I tell them that I'm unique and not to

> worry I won't share even if I could.

>

> Tony - Have a good rest and may your pain lesson. God Bless.

>

> Thanks everyone for being here, your in my prayers. terri

>

February 9, 2003

thanks terry, love and healing from anita

>

> From: " autohep <dohr@...> " <dohr@...>

> Date: Sun 09/Feb/2003 21:49 GMT

>

> Subject: [ ] Stages

>

> Hi! Need help in understanding the stages. I know there are 3

> types of hep. but how do you get to the different stages. Is it the

> higher your alt goes, and does anyone know where the lines are drawn.

>

> Jerry - thank you from recommending the book by Worman, I've just

> gotten it and it's very informative.

>

> Anita - I couldn't take Imuran because it made me very sick to my

> stomach and vomitted. Your " friends " don't understand autoimmune

> they just hear hep. I've had the same problems and try to explain to

> them I only hurt myself. Then I tell them that I'm unique and not to

> worry I won't share even if I could.

>

> Tony - Have a good rest and may your pain lesson. God Bless.

>

> Thanks everyone for being here, your in my prayers. terri

>

February 8, 2006

,

I was diagnosed in Dec 05 with AIH and I'm still in the learning

process. I've seen several people discuss stages. What do stages

refer to and what does each level mean? Any insight you could pass

along is very appreciated. Thanks.

>

> Hello and welcome.

> My name is and I was diagnosed in 1996 with AIH. I have just

been told

> I am in stage 3-4. Do you know what stage you are in yet. Were you

diagnosed

> by biopsy? I have had 3 of these. They aren't to bad. I was started

on

> Prednisone, Imuran and Actigal but am now just on Imuran.

> Ask any questions you have and we will be glad to answer them.

> I am in WV, 43 and have 2 sons. Been married 25yrs.

> Look forward to hearing from you soon

> the WV hillbilly

>

March 10, 2006

Hi I am Diagnosed in December 2004. I am a Stage 2 Level 2. I

read everything I could get my hands on when I found out I had AIH. I was first

diagnosed with Stage 4 level 3 but after one year on imuran and prednisone and a

2nd biopsy I became a stage 2 level 2. Yes stage 4 is the worst level. Just

hang in there and ask questions, its your right to know.

[ ] Stages

I was diagnosed in Dec. 05. My Dr. hasn't been very forthcoming with

information, I have to pry things out of him and even then he is

reluctant to say very much. Through my own research I found there are

3 types of AIH. My Dr. hasn't mentioned this to me so I called and

asked his nurse who in turn asked him. He said they didn't " type " my

AIH when they did a biopsy but that I'm Grade 2-3, Stage 3.

Can someone please be straight with me? Don't they recommend a

transplant at Stage 4 or am I over reacting? What ever the answer is I

can take it, I hate being kept in the dark.

Can anyone offer some guidance? Please?

July 1, 2007

Notan:

Glad you're back!

And thanks so much for the information and links re: stages...

Lee in NJSee what's free at AOL.com.

December 8, 2007

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November 20, 2011

Not perfect, but pretty good. I think they can't number us well, 'cause

we're all such *individuals* ~~ For instance, I haven't had spasms

since I began spitting up. But I had them for 25 years *before*. . . .

My esophagus didn't look very stretched at all on the swallow -- but I

'spect this is because I'm spitting up SO much (about 80% right now)--

nothing is staying down long enough to *stretch* the esophagus! And

the progression is kind of uneven, too: it hurts, then the body finds a

way to compensate so it doesn't hurt, then the compensation fails, and

it hurts again. (I know friends with back problems that it works like

that for, also).

This is a real good try, lol!

(in WV)

http://findarticles.com/p/articles/mi_7453/is_200704/ai_n32226898/

> >

> > Hi all:

> >

> > Is there a link to a site that describes the 'stages' of achalasia

> and,

> > (perhaps) their symptoms?

> >

> > I so appreciate the education and support in this discussion group.

> I

> > have what my specialist calls an 'achalasia variant', and am doing

> well

> > after many years of manageable swallowing problems helped by a

> botox

> > injection last summer. I notice folks describing being

> in 'endstage'

> > achalasia (which I assume means no peristalsis, a non-working LES

> and a

> > badly stretched esophagus), and it makes me wonder if the stages of

> > achalasia are delineated in writing anywhere.

> >

> > Thanks in advance...

> >

> > Lee in NJ

> >

>

November 23, 2011

Hi ,

I am new to the ACHALASIA community and I am still trying to figure it all out.

Does anyone know exactly how the Esophagus gets stretched? I had 2 dilations

this year and the last one went well. Before the first dilation I just couldn't

get food down real easy, after wards though I regurgitated a good 90 % or better

of what I ate and drank. I am terrified to go through that again and wonder what

we can do if anything to prevent that. I am stage 2 already.

Kim in Keno

> > >

> > > Hi all:

> > >

> > > Is there a link to a site that describes the 'stages' of achalasia

> > and,

> > > (perhaps) their symptoms?

> > >

> > > I so appreciate the education and support in this discussion group.

> > I

> > > have what my specialist calls an 'achalasia variant', and am doing

> > well

> > > after many years of manageable swallowing problems helped by a

> > botox

> > > injection last summer. I notice folks describing being

> > in 'endstage'

> > > achalasia (which I assume means no peristalsis, a non-working LES

> > and a

> > > badly stretched esophagus), and it makes me wonder if the stages of

> > > achalasia are delineated in writing anywhere.

> > >

> > > Thanks in advance...

> > >

> > > Lee in NJ

> > >

> >

>

November 23, 2011

Hi Kim!

I think the stretching comes on like this: The LES is mostly closed. Not much

is getting through to the stomach -- therefore, we are still hungry. Therefore,

we continue to eat, and *force* more food into the esophagus. Which finally

gives, and makes more room. We're stuck, because if we *don't* force it, we

starve. If we *do*, more gets through, but the esophagus gets stretched. After

the HM or dilations, it seems to shrink a good bit again.

I think all we can do is watch and be aware -- if problems start up again, after

treatment, get back to your provider, stat! I read somewhere that achalasia

patients are optimists. We shouldn't be, lol! We should be *pests*!! In my

case, it has helped to get my son involved. They simply listen better to 47

year old males than to 71 year old females. . . . Pity, that. . . .

Good luck!

> > > >

> > > > Hi all:

> > > >

> > > > Is there a link to a site that describes the 'stages' of achalasia

> > > and,

> > > > (perhaps) their symptoms?

> > > >

> > > > I so appreciate the education and support in this discussion group.

> > > I

> > > > have what my specialist calls an 'achalasia variant', and am doing

> > > well

> > > > after many years of manageable swallowing problems helped by a

> > > botox

> > > > injection last summer. I notice folks describing being

> > > in 'endstage'

> > > > achalasia (which I assume means no peristalsis, a non-working LES

> > > and a

> > > > badly stretched esophagus), and it makes me wonder if the stages of

> > > > achalasia are delineated in writing anywhere.

> > > >

> > > > Thanks in advance...

> > > >

> > > > Lee in NJ

> > > >

> > >

> >

November 26, 2011

Hi ,

I figured as much. I starved long enough and probably eat things I shouldn't at

times. I am trying real hard not to eat heavy solid food for fear of causing

more damage. My GI only told me to stay away from pepper and spicy foods and

also steak. I don't miss that too much really.

How long have you had Achalasia?

> > > > >

> > > > > Hi all:

> > > > >

> > > > > Is there a link to a site that describes the 'stages' of achalasia

> > > > and,

> > > > > (perhaps) their symptoms?

> > > > >

> > > > > I so appreciate the education and support in this discussion group.

> > > > I

> > > > > have what my specialist calls an 'achalasia variant', and am doing

> > > > well

> > > > > after many years of manageable swallowing problems helped by a

> > > > botox

> > > > > injection last summer. I notice folks describing being

> > > > in 'endstage'

> > > > > achalasia (which I assume means no peristalsis, a non-working LES

> > > > and a

> > > > > badly stretched esophagus), and it makes me wonder if the stages of

> > > > > achalasia are delineated in writing anywhere.

> > > > >

> > > > > Thanks in advance...

> > > > >

> > > > > Lee in NJ

> > > > >

> > > >

> > >

November 26, 2011

Kim, my guess is a long time, lol! I started spitting up on my pillow about 6

years ago, but for several years before that, every now and again, if I ate in

public, while talking, I'd get these spasms, and have to go to the bathroom, and

spit it all out. Ironically, I knew then that it *wasn't* vomiting, but it

didn't register that this was a whole different kind of thing. About four years

ago, I'd wake an find parts of dinner from *two* days before in my mouth.

Talked to my doc then, she didn't know, but said when it really bothered me, let

her know and she'd set something up with a GI guy. I'd have some bad weeks when

it felt like someone was grabbing my throat when I tried to swallow, and almost

let her. Then it'd go away, and I didn't. This year, no more pain on

swallowing, no more spasms, but a huge increase in spitting up. I wasn't

relating *any* of this to the weight I was losing. Then this summer it kind of

speeded up. But my GP had a baby, and I was trying to wait till she got off of

maternity leave. I almost made it, lol! I ended up in ER three days before the

appointment. . . . Before admission, at the barium swallow, I recognized the

bird's beak, and me and the radiologist did the diagnosis together. It's taken

two months to get the GI guys to admit the same. Nothing in their world seems

to be an emergency, eh?

They suggested Ensure and/or Boost. Gag -- rant for another place. I've pretty

much been blenderizing everything. Some is not half bad. Even learned to do a

passable salad. But I'm still losing most of what I eat. I weigh twice a day

now, and if I lose a pound, I start adding tons of butter to my soups, lol!

It's working.

My GI guys are kicking me up to the UVA hospital, where I'm hoping we can get

some sense of urgency. . . .

(in WV)

> > > > > >

> > > > > > Hi all:

> > > > > >

> > > > > > Is there a link to a site that describes the 'stages' of achalasia

> > > > > and,

> > > > > > (perhaps) their symptoms?

> > > > > >

> > > > > > I so appreciate the education and support in this discussion group.

> > > > > I

> > > > > > have what my specialist calls an 'achalasia variant', and am doing

> > > > > well

> > > > > > after many years of manageable swallowing problems helped by a

> > > > > botox

> > > > > > injection last summer. I notice folks describing being

> > > > > in 'endstage'

> > > > > > achalasia (which I assume means no peristalsis, a non-working LES

> > > > > and a

> > > > > > badly stretched esophagus), and it makes me wonder if the stages of

> > > > > > achalasia are delineated in writing anywhere.

> > > > > >

> > > > > > Thanks in advance...

> > > > > >

> > > > > > Lee in NJ

> > > > > >

> > > > >

> > > >

November 26, 2011

Wow - you have had this a long time. Have you been dilated yet? The first one

they did was before any other tests were performed and it did not go well at

all. My food kept getting stuck and it was real hard to get it down. After the

1st dilation, as soon as I woke up I started vomiting and then from there on out

I regurgitated everything I tried to eat or drink. Little if any would stay

down. The I did the esophagram and I seen the bird's beak too, but the hospital

I had been going to for the past 12 years couldn't treat me so they referred me

to Froedert Hospital, which is a great hospital. But they only treat 2-3

patients there a year with Achalasia.

One of the nurses at Froedert did tell me something kind of scary though. She

said that if you get food stuck in your Esophagus for anywhere between 6-24

hours, necropsis sets in and then the tissue where the food is stuck dies. And

once it is dead you can't get it back. If this is true I am sure we all have

that problem and don't even know it.

I sure hope you get some relief soon.

Kim in kenosha

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Saturday, November 26, 2011 11:27 AM

Subject: Re: Stages

Â