Re: Jerry:

[Guest guest]

Because I tend toward denigrating myself at inoppurtune times and am

taken to litteraly.

Jerry,

Why do some think you are not taking care of your new liver?

Shireen

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>Subject: Re: [ ] Jerry:

>Date: Fri, 29 Sep 2000 18:00:20 -0400 (EDT)

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>Rhodette.... I`m not sure how I got off on the wrong foot with these

>people but I did, since then SOME have taken every thing I say, analyze

>it, tell me what`s wrong with me and put me down. They tell me that I

>haven`t a clue, that this group is about love and support but have shown

>me evidence of neither (at least toward me)

>all that aside (you can follow the last 3 weeks by scrolling back,

>keping an open mind and draw your own conclusions)

>I would be glad to help you , if I can.The primary reason I joined this

>group was to offer help and curiosity about AIH. I am a transplant

>receipient(Oct. 19, 1995) I needed it because I had " end stage "

>cirrhosis due to alcohol abuse. The procedure went extremely well, But

>since then I have been diagnosed bone marrow cancer which though slow

>moving is incurable and terminal... then 3 weeks ago I was diagnosed

>with autoimmune hepatitis whose only real cure is transplant. Given my

>circumstances, I know I`m not a candidate for another transplantation,

>but that doesn`t bother me. I came here to offer help and talk to people

>that have a common ground, I am seeking nothing in return (I`ve asked

>for no help and I expect no cure.) What I have to offer is my

>experiences with liver disease ... I been through every symptom

>presented by terminal cirrhosis (ascites,varices,

>edema,encephalopathy,jaundice etc, etc.)

>I`ve been litterally on a day to day basis with dying.I have had every

>procedure, offered, at least once----10 endoscopies,4 colonoscopies,

>sclerotherapy,4 biopsies,ultrasounds,MRI`s, 4 perisentises(?sp?)and a

>host of others i can`t even remember .. more blood tests than one could

>count and scores of different meds. I was in intensive care 3 times and

>hospitalized at least a dozen. `ve had more transfusions than I can

>remember .Been semicomatose from encephalopathy and almost bled to death

>when my esophageal varices hemmoraged ( my blood pressure dipped to

>67/40).I had an extremely successful transplant and a miraculous

>recovery.All this and more I bring to the table. this is not to say `m

>unique just that I have the experience to offer help. I also suffer the

>same symptoms the others with AIH have

>and am now on prednisone, so I can relate. What I offer is my sense of

>humor and positive outlook I`ve been through all this by faith in the

>God of my understanding and the knowledge that everything is as it`s

>supposed to be at that moment. Acceptance is my key.I`m never really

>depressed, nor, no matter what some think, am I angry.

>I also bring the fact that I`m a recovering

>alcoholic (6 1/2 yrs. sober) whose primary purpose is to help another.

>Add to this the fact that I sat by bed of my wife as she died,in 1989 at

>age 39,--of cirrhosis. She left 4 daugters for me to raise.I am

>struggling some at guilt over allowing life support to be removed--but

>thats another issue and while not an excuse in any way increased greatly

>my use of alcohol.

>I have a life outside liver disease and don`t spend my day obssessing

>over my future. I don`t research all the things some of the others do ,

>so intensely and I don`t go around patting my self or others on the back

>because i`m so brave at facing this thing that I have little control

>over....thats life.Everyone who faces life on lifes terms is courageous

>I guess. I. trust my doctors and do what I`m asked, I trust God and try

>to do as he asks. If I can help in any way that is God`s will for me,

>and I try not to judge others actions.

>

>love and serenity jerry.

>

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