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Debbie

You are also a beautiful women.

Seeing everyones picture kind of breaks my heart. I

guess its different when you just see a note and name

of someone, but when you see the picture of the real

person who is suffering its heartbreaking

Thanks for sending it to us!

Elena

--- Debbie <debbie1m@...> wrote:

> Hi All:

>

> Lori your picture came through perfectly : )

> Beautiful woman you are. I am attaching mine which

> was taken in March of this year.

>

> Debbie

> AIH

> Michigan

>

>

> ATTACHMENT part 2 image/gif name=Deb & Steve.gif

<HR>

<html>

>

=====

Elena AIH

San Diego, CA

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Thanks , got the pic, it's a nice one!! Have a Good Day! Lori C.

[ ] PICS

>Hey everyone,

>

>Here is my pic at the Pride festival in Cleveland this summer. The dog is

my

>five year old Chow, named Bob. He is my baby and he is spoiled rotten!!!

>

>Peace and Love

>

>

>

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Hi Geri:

I wish I felt as good as I looked LOL. I do get compliments tho and yes

people can't believe I have a chronic illness. I missed being listed for

transplant by one point on the 7 point system. The only thing that is

holding them back at this point from listing me is the fact that my LFT's

are not abnormally high. My GI and the transplant team advised me that it

would only take a slight move upward in my LFT's for them to list me. I

have not been feeling so great lately and I am sure that I am having a hep

flare up. I see my GI next Wednesday.

Anyway, I guess we all get better looking with age don't we. : ) I am

thankful that I've made it to 38 and look forward to many, many more years.

I guess it is my positive attitude that keeps me going. I cheated death

once when I had my massive variceal bleed in 1994 and I don't plan on going

anywhere just yet. I fought too hard to make it to where I am now.

Thank you for your kind words : )

Debbie

AIH

Michigan

Re: [ ] Pics

>From: Geri Spang <spangs@...>

>

>Debbie,

>Does everyone tell you how great you look for someone with a chronic

>disease? Nice photo. Hope you are doing as well as you look.

>Take care,

>Geri

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

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Debbie,

You're lucky that you continue to look so good even though you probably

have to deal with people who have a hard time believing you aren't in

raging good health. At least you can retain your self esteem. How did you

avoid the Prednisone Puff?

My LFTs are also very good, comparatively speaking. They were high enough

for the first months after biopsy and diagnosis, but when they dropped I

earned the " remission " designation. I would be so happy to be where I am

now if I didn't have to keep battling the medication side

effects. Hopefully they won't amount to anything worth worrying about

(though osteoporosis worries me a lot). I can deal with discomfort and

pain as long as nothing major is going wrong. In fact, you can get used to

pain so you hardly notice it. I have a friend who has multiple

myeloma. They've replaced many bones and joints in his body (he lives in

Italy and Italian medicine can be different than it is here) and he calls

himself the " bionic man " because he sets off airport alarms every time he

passes through a security checkpoint. He realizes that his prognosis is

very poor (maybe 1 to 3 more years) and every day for him is incredibly

painful. But, he has a family to support and he travels half of every

year, all over the world, to some of the most remote 3rd.world countries

because that's what he must do. He says that pain is the least of his

concerns. Boy, do I admire him! My own problems seem so trivial by

comparison.

I'm sorry for not paying better attention, but when were you first

diagnosed? Is this your first flareup or have you had multiple? Are you

taking Prednisone and Imuran? Living with fear of a relapse is like living

under a roof that's about to collapse. I'd like to believe that my liver

has done what it's going to do and that there will never be a flareup in my

future. My docs seem to believe that as long as I continue on the drugs,

it won't happen to me. I think it's because of my exceptionally good

response to treatment. I hope they're right.

The fact that you look so good and so young is nature's way of

compensating. Almost like handing out little treats for being such good

sports. I've noticed that many if not all of the liver disease people are

more vital by nature and good looking people in general. Most of us battle

Prednisone induced weight but that's just a superficial irritation even if

it does bring us so much grief.

I hope you aren't having a flareup. Keep us posted about what's going

on. Are you still working?

Take care,

Geri

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Hi Geri:

First off, no I am not working. I was forced into retirement after my bleed

in 1994. I am collecting SSD. Secondly, I was diagnosed in 1985 .. but I

remember having symptoms of AIH as far back as 1980. Believe me, I have had

my share of the prednisone puff LOL. I try to maintain my weight by walking

as much as possible (when I am not sleeping that is). I started out by

taking prednisone only in 1985 along with lasix and a potassium supplement.

I was weaned down to 5 mg. I had my bleed in 1994 due to the fact that I

was pregnant and unfortunately lost my daughter at 9 mos when I went in to

deliver. Anyway, that was in October of 1994. In January of 1995 my LFT's

started to skyrocket. I was evaluted for transplant at that time. The

doctors then decided to try me on a regimen of prednisone along with imuran.

That seemed to do the trick. I now take 10 mg of prednisone, 50 mg of

imuran, 40 mg of lasix, lactulose and fosamax (which is calcium due to the

fact that I now have severe bone loss from so many years of being on the

prednisone). I have had multiple flare ups throughout the years. I know my

body better than any of my doctors and know exactly when one is occurring.

I guess having AIH for so many years will do that to a person. I am at the

point now where the only thing that is keeping me alive are my meds,

however, due to the strict rules and regs of the government and the

hospital, they cannot list me until I meet all of the criteria. Right now I

am extremely exhausted (a major sign of a flare up) and have increased

ascites, nauseousness, diarreah, blah blah blah .. and the list goes on LOL.

I guess it's just become a part of my life now .. a way of life for me. I

really don't know anything other than AIH. I remember how good I felt as a

teen though. But living with AIH for almost 20 years out of 38 makes you

feel sometimes that enough is enough. Sure sometimes it is very hard to

" keep my chin up " . But I never have been a quitter .. I have too much to

live for. I know it will only be a matter of time before I am listed .. and

if I know me .. I bet I will get listed next week. I'm keeping my fingers

crossed.

Debbie

AIH

Michigan

Re: [ ] Pics

>From: Geri Spang <spangs@...>

>

>Debbie,

>You're lucky that you continue to look so good even though you probably

>have to deal with people who have a hard time believing you aren't in

>raging good health. At least you can retain your self esteem. How did you

>avoid the Prednisone Puff?

>

>My LFTs are also very good, comparatively speaking. They were high enough

>for the first months after biopsy and diagnosis, but when they dropped I

>earned the " remission " designation. I would be so happy to be where I am

>now if I didn't have to keep battling the medication side

>effects. Hopefully they won't amount to anything worth worrying about

>(though osteoporosis worries me a lot). I can deal with discomfort and

>pain as long as nothing major is going wrong. In fact, you can get used to

>pain so you hardly notice it. I have a friend who has multiple

>myeloma. They've replaced many bones and joints in his body (he lives in

>Italy and Italian medicine can be different than it is here) and he calls

>himself the " bionic man " because he sets off airport alarms every time he

>passes through a security checkpoint. He realizes that his prognosis is

>very poor (maybe 1 to 3 more years) and every day for him is incredibly

>painful. But, he has a family to support and he travels half of every

>year, all over the world, to some of the most remote 3rd.world countries

>because that's what he must do. He says that pain is the least of his

>concerns. Boy, do I admire him! My own problems seem so trivial by

>comparison.

>

>I'm sorry for not paying better attention, but when were you first

>diagnosed? Is this your first flareup or have you had multiple? Are you

>taking Prednisone and Imuran? Living with fear of a relapse is like living

>under a roof that's about to collapse. I'd like to believe that my liver

>has done what it's going to do and that there will never be a flareup in my

>future. My docs seem to believe that as long as I continue on the drugs,

>it won't happen to me. I think it's because of my exceptionally good

>response to treatment. I hope they're right.

>

>The fact that you look so good and so young is nature's way of

>compensating. Almost like handing out little treats for being such good

>sports. I've noticed that many if not all of the liver disease people are

>more vital by nature and good looking people in general. Most of us battle

>Prednisone induced weight but that's just a superficial irritation even if

>it does bring us so much grief.

>

>I hope you aren't having a flareup. Keep us posted about what's going

>on. Are you still working?

>Take care,

>Geri

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

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Lord, Debbie, you have really been through it all. I'm sitting here with

tears in my eyes and I'm not a weepy person. It's so DAMNED unfair. I

know, things could be worse. I think about that, but I also think about

the fact that each of us live only our own lives, not the lives of people

who are worse or better off. We can only " feel " within our own

existence. I had an aunt who had " everything " . A husband who adored her,

a comfortable income, financial stability and comfort so she could have

anything she wanted, yet she was always deeply depressed. In a more

romantic era, it would have been called Meloncholy. Many had no patience

with her depression, but I understood that it didn't help her to know that

others didn't have the privileges she enjoyed. She only knew her own

private misery. We have no right to demean someone else's unhappiness

because they aren't suffering up to some unmeasured standard.

To go undiagnosed, untreated and to even lose a baby over the years because

of this insidious disease must have put a mark on you. I think that in

your case it made you stronger. But that's a helluva way to become strong!

I think that many of us have been sick for years but this is an elusive

condition. We look healthy. Many of us even look terrific. It makes me

angry to think about the failed diagnosis we've all experienced, the

patronization, the impatience from those who could have helped us but who

instead chose to believe that we were simply (irritatingly) neurotic. I

can't complain that no one ever tried to figure out what my problem was,

but it was scattershot medicine. Test for this, test for that, no

conclusions. When an insightful specialist finally figured out that

something was going seriously awry, it was during the only time I was on an

HMO and my primary decided that my symptoms didn't merit further

investigation. I don't know if he spared me a few years of anxiety or cost

me a few years of my life. Too late to do anything about it anyhow.

But you've been cheated out of your potential for a career, had a child

stolen from you and you now must wait for your body to cause the right

buttons to be pushed before you can perhaps be given the opportunity to go

on with your life. When I was your age I was at the peak of my career

(though I was already having early AIH symptoms and no one realized

it.) Those were some of the most vital years of my life. You are far too

young to be relegated to a status of " disabled. "

Don't let that bone density problem get out of control. I hear that

Fosomax is great, but does it restore bone density or just stop

depletion? I couldn't take it so I'm taking Evista instead. Evista was

recently approved for actual restoration of bone density and I'm counting

on it to keep me from becoming crippled. If it's not too late. If

Prednisone hasn't already done irreversible damage. I hope that Fosomax

does the same thing (restores density.)

I was actually on the list and taken off because of my labs, just like

you. As long as my labs are good, I'm going to remain in limbo. I've been

having nausea (mild) and bouts of diarrhea (not constant) recently, as well

as fatigue and a bit of dizziness. I've decided to blame the flu shot I

had last Monday.

When you're listed, do you have any idea how long the wait will be for

you? If you aren't " critical " , couldn't it be up to a couple of

years? And then, would you go back off the list like I did, once you're

labs stabilize and remain stable for awhile?

It's a rough system but it's all we have, and not so many years ago, they

couldn't even do liver transplants. There's one blessing and we need all

we can get.

Take care,

Geri

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  • 2 years later...
Guest guest

Good morning all. I hope you don't mind me being a proud Grandfather. But I just wanted to share athis picture of my grandkids.

Terry

Note: forwarded message attached.

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Guest guest

How sweet and adorable...... and still a reasonable age. LOL [ ] Fwd: pics Good morning all. I hope you don't mind me being a proud Grandfather. But I just wanted to share athis picture of my grandkids. Terry Note: forwarded message attached.

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Guest guest

Well I can't see my 3 grandkids and I too have along wait HOPEFULLY!!..My next one to make me a granny is my 14 yr. old and she better wait a while..A LONG WHILE..

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Guest guest

Be proud! I'm afraid I have a long wait to be a grandpa, my son's only 12. I have a 30 year old stepson though, and I'm hoping he'll make me a step-grandpa soon!! (he and his girlfriend got married a few months after my wife and I) -dz-

Terry Long <pawpawto3@...> wrote:

Good morning all. I hope you don't mind me being a proud Grandfather. But I just wanted to share athis picture of my grandkids. Terry Note: forwarded message attached.

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Guest guest

Thank you , I just wish they were a lot closer. 1400 miles make's it tough only talking on the phone & seeing them for a week once a year.

Terry

WILLIAM A WALTKE <kbwaltke@...> wrote:

How sweet and adorable...... and still a reasonable age. LOL

[ ] Fwd: pics

Good morning all. I hope you don't mind me being a proud Grandfather. But I just wanted to share athis picture of my grandkids. Terry Note: forwarded message attached.

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Guest guest

Susy & I joke that we should have skiped the kids & just had the grandkids. With the kids we worried over them growing up into well adjusted aduilts "we made that 1 out of 2" the daghter is still giving us head aches at 25. With the grandkids we just love & spoil them. Let Mom & Dad worry about them growing up into well adjusted aduilts

Terry

imaganeer <imaganeer@...> wrote:

Be proud! I'm afraid I have a long wait to be a grandpa, my son's only 12. I have a 30 year old stepson though, and I'm hoping he'll make me a step-grandpa soon!! (he and his girlfriend got married a few months after my wife and I) -dz- Terry Long <pawpawto3@...> wrote:

Good morning all. I hope you don't mind me being a proud Grandfather. But I just wanted to share athis picture of my grandkids. Terry Note: forwarded message attached.

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Guest guest

1400 miles away is close enough as they trun preteen. HA karen [ ] Fwd: pics Good morning all. I hope you don't mind me being a proud Grandfather. But I just wanted to share athis picture of my grandkids. Terry Note: forwarded message attached.

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Guest guest

Jan when our daughter was 17. we knew that she wouldn't wait. So we had norplant insertered in her arm. So she wouldn't make us grandparents to soon. When she turned 20 she had it taken out. When she had about a year latter. She only had him home less then one week & the state took him away from her. She wasn't feeding him durring the night. We had him with us for around 26 weeks & she still was unfit to care for him. Before she had we had taken on the job of caring for Susy's Mom & it was going to be to much caring for both of them.

At the same time some friends of Susy's sister was wanting to adopt a boy & was more then willing for Susy & I to have contact with him "but not ". They had a daughter Abby. So Susy & I made her our adopted granddaughter & love them both the same. Before we talked into signing her rights over we talked her into having her tube tighed. We knew with her mental problems she would never be able to care for a baby. If I have any more grandkids it will be up to . His wife was going to have one last year but misscaraged at 16 weeks.

Terry

Jannewilms43@... wrote: Well I can't see my 3 grandkids and I too have along wait HOPEFULLY!!..My next one to make me a granny is my 14 yr. old and she better wait a while..A LONG WHILE..

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There is merit in that plan Jan...... till they get to Pre teen then once again Choas ensues.... If I could just wire her mouth shut I lover her to death. Re: [ ] Fwd: pics Terry I think we should all just skip the kids and go straight to the grandkids too...LOL

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  • 6 years later...

Melinda,

Great photo album! I loved seeing the progression through the hospital.

The picture of you the first day after surgery says a thousand words!

I also love the pic of you and Alpine.

Its fun looking back 18 motnhs and realizing how far you have come. I

betyou will notice progress slows down...but honestly, every few

monthsyou will still find yourself saying " Hey! I can do such 'n such

now! "

Thanks for sharing.

Take Care, Cam

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  • 1 year later...
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