Re: Jerry:

[Guest guest]

Dear Jerry,

Have you & your doctor discussed getting some help in the sleep department.

When I was on Pred. my doctor perscribed Ambien. I couldn't sleep without

it. I took it every night for five months. By the time I was weened to 5

mg. a day, I didn't need Ambien, and I was able to just stop taking it.

Some people didn't get results from this drug, but many in this group have.

You might check it out.

[Guest guest]

jenny.....

thanks a lot. I went to an A.A. meeting and ran into a friend who is on

prednisone

she said the vey same thing that you did and that it was working well.I

don`t know if it`s th same drug but she assured me it wasn`t a narcotic,

which always worries me. Is this so? I have a real time taking any kind

of drugs any more (I try to be macho) preferring to rely on meditation

and positive thinking to relieve me of pain and stress and the like

,this doesnt always work as well , I suppose, as if I just listened to

my doctors advice, or yours for that matter. I am not the best patient

in te world when it comes to taking my meds.

In fact when the blood test that showed my liver functions elevated it

was though that I was showing signs of rejection of my transplnt,

because I have a history of forgetting to take my prograf regularly.The

Cleveland Clinic was very upset with me but the biopsy revealed AIH

instead. I don`t knw which is better AIH or rejection...I suspiscion AIH

because they can control it better...oh welll.

I had my weekly blood test today and the pred. seems to be working, my

functions are down significantly fom 2 weeks ago.

I see my gastro this Fri. my oncologist next week, and the hep.

doctor and transplant team at the clinic in 3 weeks...

This means to me that I`m going to live for at least 3 weeks. I`ve

settled into a patten now I been able to level off my moods to my usual

upbeat self my sleeping is getting better and the best thing is the pred

ha greatly reduced my joint and back pain .... look out girls... I`m

back on the prowl. I read all the posts and have learned a great deal,

thank you all , I don`t often respond to those regarding symptoms,

meds, and questions about this disease because I don`t feel qualified. I

have however had been in end stage cirrhosis and have personally

experienciedd every thing that entails and thier treatment. It is a

stage I hope none of you ever reaches . I pray for a cure for all of

you. A friend of mine, today

told me of some reading he did on the internet involving stem cell

harvesting that has shown great promise in autoimmune disease treatment

, here is hoping ....

take good care of YOURSELF

love and serenity ......jerry

[Guest guest]

I suppose, as if I just listened to

my doctors advice, or yours for that matter. I am not the best patient

in te world when it comes to taking my meds.

In fact when the blood test that showed my liver functions elevated it

was though that I was showing signs of rejection of my transplnt,

because I have a history of forgetting to take my prograf regularly.The

Cleveland Clinic was very upset with me but the biopsy revealed AIH

instead. I don`t knw which is better AIH or rejection...I suspiscion AIH

because they can control it better...oh welll.

Ok Jerry, now you have my ire up and I will most probably upset some on the

list with my following comments. To those, I apologize in advance...

TO Jerry: I read with great concern and sorrow the nonchalant way you take

your meds and then have the audacity to complain about how you feel. Life is

tough enough without having to include the regime of meds that a transplant

entails. When you received that gift of life, you made a commitment to

protect it and try to live life the best way you could given the second

opportunity you were afforded. To gamble away this opportunity you received

(not taking your meds on schedule or worse forgetting) while so many are

dying while waiting for an organ is irony. It is this attitude by people

like you that makes trying to increase donations difficult.

I know from experience how thorough and complete Cleveland Clinic screens and

counsels their patients. The transplant team there is top notch and go far

beyond their jobs to assist their patients. To be non compliant is just

ludicrous to me. Just read in this group how many are waiting who would

welcome the opportunity to have a transplant to help them go forward with

their lives. The analogy I see here is like the people who have kids and

then just ignore or abuse them while there is a list a mile long of people

waiting to adopt and love a child.

I hope you step back and reevaluate the gift you were given and take the

appropriate measures to insure you do all you can to make sure you keep it

healthy. If you need assistance with depression, Dr. Locala, Carol ,

and any of the doctors or transplant coordinators are there to help you.

All you have to do is ask-- they arent judgmental, they are there to help.

Playing " Russian roulette " with your meds sounds almost like a cry for help

from you. I hope you seek the treatment you need.

If you went to the Cleveland Clinic, I would assume you are near me. I would

love to meet you personally and see what the heck is going on.

I didn't go through days of evaluation and then 12 hours of surgery so Randy

could play cat and mouse with his life. He takes his meds as scheduled and

perhaps that is why we are doing so well. His recovery is ahead of schedule

and continues to improve. I was his living liver donor and have never

regretted my decision to donate. However, if you had been my recipient, I

would be wondering about now, was it worth it.

Cheryl Blechl McCullough

[Guest guest]

Hi Cheryl and Randy,

Glad about your new job, and that everything is going so great...give Randy a

big hug from all of us..

I agree with you completely what you said about transplants., I can no longer

be approved for a liver transplant should I need one...Medicare will not pay

for transplants..so I have to take extra special care now. Which I am doing.

It is a shame our government considers retired people are no worth the

expense of a transplant. But I still love my country, will continue to vote

in each election and still stand proud when my flag goes by.

Any one watching the olympics besides me, I have every day, and am so proud

of all the athletes that are there. I don't like watching sports but do

enjoy the Olympics..

Love ya'll, have a great day, remember to laugh all day. Laughter is music to

the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy,

especially love a lot, the more love you give the more you get in return.....

Joan, Florida

AIH, 1 Gall Stone, HBP

Fox

<A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's Den</A>

<A HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A>

Foxy's Health

<A HREF= " http://www.foxdianasden.com/health.com " >Foxy's Health</A>

<A HREF= " http://www.foxdianasden.com/health.com " >

http://www.foxdianasden.com/health.htm</A>

Liver Support

<A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver Support</A>

<A HREF= " http://www.foxdianasden.com/liver support.htm " >

http://www.foxdianasden.com/liver support.htm</A>

[Guest guest]

Joan, I am sorry to hear that you won't be eligible for a transplant. Is

this something new with Medicare?

During my last doctor visit, my Gastro and I spoke about transplants and how

they are no longer doing them here in NM. I have insurance and will go to

Cedars when the time comes. I asked him what happens to people who don't

have insurnace and he said " they die " . I was shocked because just a year ago

indigents were able to get transplants here at University Hospital. He said

that Tucson was also due to lose their program as well.

The whole issue is just alarming to me.

Jen

On Wed, 27 Sep 2000 12:14:01 EDT, egroups wrote:

> Hi Cheryl and Randy,

>

> Glad about your new job, and that everything is going so great...give

Randy a

> big hug from all of us..

>

> I agree with you completely what you said about transplants., I can no

longer

> be approved for a liver transplant should I need one...Medicare will not

pay

> for transplants..so I have to take extra special care now. Which I am

doing.

> It is a shame our government considers retired people are no worth the

> expense of a transplant. But I still love my country, will continue to

vote

> in each election and still stand proud when my flag goes by.

>

> Any one watching the olympics besides me, I have every day, and am so

proud

> of all the athletes that are there. I don't like watching sports but do

> enjoy the Olympics..

>

> Love ya'll, have a great day, remember to laugh all day. Laughter is

music to

> the heart and very healing. Soooooo, laugh a lot, love a lot, and be

healthy,

> especially love a lot, the more love you give the more you get in

return.....

>

>

> Joan, Florida

> AIH, 1 Gall Stone, HBP

>

> Fox

> <A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's Den</A>

> <A HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A>

>

> Foxy's Health

> <A HREF= " http://www.foxdianasden.com/health.com " >Foxy's Health</A>

> <A HREF= " http://www.foxdianasden.com/health.com " >

> http://www.foxdianasden.com/health.htm</A>

>

> Liver Support

> <A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver Support</A>

> <A HREF= " http://www.foxdianasden.com/liver support.htm " >

> http://www.foxdianasden.com/liver support.htm</A>

>

_______________________________________________________

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[Guest guest]

cheryl...

I didn`t mean to sound so nonchalant about my gift. I am more grateful

than you w ould imagine. I have dedicated my last 5 yrs. serving the

God of my understanding for extending my stay on earth. Unlike most of

you, my transplantation was due solely to my lifelong abuse of alcohol.

In other words, it could have been avoided. I know alcoholism is a

disease, but I offer no excuses, I was totally to blame for my

condition. I can`t relive the past, but I can do what I am able, with

God`s help, to help a still sufferingalcoholic ... so that he or she

doesn`t have to suffer as much as I did. (and I did suffer greatly ...

each day that I woke up when I was terminal with cirrhosis was a gift

and a struggle...I had every thing end stage presents...horrible

ascites, edema,jaundice,continual bleeding,constant diarhea,continuos

ex-

haustion, encephalophy,.... I was in ICU at least 3 times near death, My

esophageal varices ruptured so badly that it took 20 units of blood

before it came under control. ... was hospitalized i3 times in a year

and a half period, had over 10 edoscopies with scleratherapy. and 2

colonoscopies. I had 3 liver biopsies and my ascites was drained 4

times... they were preparing me for a shunt when my transplant came up.

I spent the same time on the operating table as you and even had to be

sent back and reopened to repair a vessel that hadn`t closed. During 6

ms of this ordeal I was an inhouse client at a rehab center, where the

other clients and conselors wre afraid to be too close

because they thought I was going to die at any time. I have hoped the

grotesqueness of my appearance has frigtened at least one person into

sobriety. During this time I developed a close relationship with God and

have put a faith in Him that no matter what happens, everything will be

alright and just the way its supposed to be. To that end I`ve refused to

take MYSELF seriously and tend to see irony in many things. This is not

to say I don`t take all other of God`s childern seriously. If one would

talk to my friends (of whom there are many) I`m sure I would be

described as warm, caring,funny, understanding and generous to a

fault,with love for all God`s creations. I`ve dedicated my life to

service in A.A. a I believe this is God`s will for me

and as payment for a prolonged life. I believe and my doctors and nurses

have told me that my sense of humor and always positive outlook was the

main reason for my miraculous survival. My trust and faith in the God of

my understanding has kept me strong . I am never down nor depressed,

Whatever happens ,happens for a reason. I`m truly sorry you were put off

by my seeming cavilier attitude but I tend toward self deprecation and

mean no offense nor harm to others. I actualy am not the bad patient I

would lead you to believe but was attempting some badly conceived humor

directed at myself. Not that need to explain but during the time I was

off my meds. I was spending 10 hr. days in volunteer work . When my

script ran out I kept telling myself I would pick it up the next day but

I always seemed so exhausted I figured one more day wouldn`t hurt. As it

turned out the absence of 6-7 days of my immunodepressant (prograf) may

have unmasked my AIH. (I am also suffering from terminal cancer.... so

I`m not much of a candidate for another transplant nor do I think I

deserve it)

hich brings us to another subject, if we are to keep analyzing

me....then perhaps I shpould tell you I do harbor some deepseated

guilt... one for being allowed to get a transplant, when I`m not sure I

deserved it over others and two an unshakable feeling that I killed my

wife when I agreed to allow them to disconnect life support and put her

on morphine drip....these are real feelings that won`t go away. I would

humbly ask (each of) you) to perhaps show me some of the compassion you

freely give to the others in this group before you attack every stupid

thing I say.

I live in Akron Ohio and will gladly give you my phone number and

address if you so desire . I think if you met me you`d find me not at

all the person you so readily accuse me of being , thru your preceptions

of what you think you`re hearing when you read my messages.

I like this quote: " There is a principle which is a bar against all

information, which is proof against all arguments

and which cannot fail to keep a man in everlasting ignorance---- that

principle is contempt prior to investigation. "

I have tried mightily to not get preconceived pictures of any of you

from what you write... but sometimes it`s hard when your own group rules

are bent.

Again I`m sorry to have ired you , my intent is to harm no one. I guess

I`ve gotten of onthe wrong foot from day one from which there seems no

recovery . It`s a little hard to write my own feelings when each is

taken to task as being alien to that of the consensus. I was hoping only

to share not be judged.

sincerly.....jerry

I suppose, as if I just listened to

my doctors advice, or yours for that matter. I am not the best patient

in te world when it comes to taking my meds.

In fact when the blood test that showed my liver functions elevated it

was though that I was showing signs of rejection of my transplnt,

because I have a history of forgetting to take my prograf regularly.The

Cleveland Clinic was very upset with me but the biopsy revealed AIH

instead. I don`t knw which is better AIH or rejection...I suspiscion AIH

because they can control it better...oh welll.

Ok Jerry, now you have my ire up and I will most probably upset some on the

list with my following comments. To those, I apologize in advance...

TO Jerry: I read with great concern and sorrow the nonchalant way you take

your meds and then have the audacity to complain about how you feel. Life is

tough enough without having to include the regime of meds that a transplant

entails. When you received that gift of life, you made a commitment to

protect it and try to live life the best way you could given the second

opportunity you were afforded. To gamble away this opportunity you received

(not taking your meds on schedule or worse forgetting) while so many are

dying while waiting for an organ is irony. It is this attitude by people

like you that makes trying to increase donations difficult.

I know from experience how thorough and complete Cleveland Clinic screens and

counsels their patients. The transplant team there is top notch and go far

beyond their jobs to assist their patients. To be non compliant is just

ludicrous to me. Just read in this group how many are waiting who would

welcome the opportunity to have a transplant to help them go forward with

their lives. The analogy I see here is like the people who have kids and

then just ignore or abuse them while there is a list a mile long of people

waiting to adopt and love a child.

I hope you step back and reevaluate the gift you were given and take the

appropriate measures to insure you do all you can to make sure you keep it

healthy. If you need assistance with depression, Dr. Locala, Carol ,

and any of the doctors or transplant coordinators are there to help you.

All you have to do is ask-- they arent judgmental, they are there to help.

Playing " Russian roulette " with your meds sounds almost like a cry for help

from you. I hope you seek the treatment you need.

If you went to the Cleveland Clinic, I would assume you are near me. I would

love to meet you personally and see what the heck is going on.

I didn't go through days of evaluation and then 12 hours of surgery so Randy

could play cat and mouse with his life. He takes his meds as scheduled and

perhaps that is why we are doing so well. His recovery is ahead of schedule

and continues to improve. I was his living liver donor and have never

regretted my decision to donate. However, if you had been my recipient, I

would be wondering about now, was it worth it.

Cheryl Blechl McCullough

[Guest guest]

Am I hearing this correctly?. Thats obscence. I cant beleive!. I

guess that means medicaid also. God help us!!

Andi

>

> > Hi Cheryl and Randy,

> >

> > Glad about your new job, and that everything is going so

great...give

> Randy a

> > big hug from all of us..

> >

> > I agree with you completely what you said about transplants., I

can no

> longer

> > be approved for a liver transplant should I need one...Medicare

will not

> pay

> > for transplants..so I have to take extra special care now.

Which I am

> doing.

> > It is a shame our government considers retired people are no

worth the

> > expense of a transplant. But I still love my country, will

continue to

> vote

> > in each election and still stand proud when my flag goes by.

> >

> > Any one watching the olympics besides me, I have every day, and

am so

> proud

> > of all the athletes that are there. I don't like watching

sports but do

> > enjoy the Olympics..

> >

> > Love ya'll, have a great day, remember to laugh all day.

Laughter is

> music to

> > the heart and very healing. Soooooo, laugh a lot, love a lot,

and be

> healthy,

> > especially love a lot, the more love you give the more you get in

> return.....

> >

> >

> > Joan, Florida

> > AIH, 1 Gall Stone, HBP

> >

> > Fox

> > <A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's

Den</A>

> > <A

HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A>

> >

> > Foxy's Health

> > <A HREF= " http://www.foxdianasden.com/health.com " >Foxy's

Health</A>

> > <A HREF= " http://www.foxdianasden.com/health.com " >

> > http://www.foxdianasden.com/health.htm</A>

> >

> > Liver Support

> > <A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver

Support</A>

> > <A HREF= " http://www.foxdianasden.com/liver support.htm " >

> > http://www.foxdianasden.com/liver support.htm</A>

> >

>

>

>

>

>

> _______________________________________________________

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[Guest guest]

Jerry,

We will be in Cleveland tomorrow, Friday, Sept. 29. Please forward your

phone number to us and we will call you. You can send it to my email address

so as not to broadcast it across the net.

CHERYL722@...

Cheryl & Randy

[Guest guest]

Jerry, I don't think we have ever talked but I have read many of your e-mails

and the ones sent to you. If I may put my two cents worth in I think what

most of us are concerned with is you not taking care of yourself. Not

wanting to step on any toes but yes you were given a second chance and their

are a lot of people out there waiting for a liver. So please take care of

yourself and take your meds as directed. We don't want to lose you and we

don't want that transplant to be in vain. I hope you take this in the manner

in which it was intended. God bless and have a good night. Genny/Jodi's

Mom/AIH

Florida

[Guest guest]

Jerry,

For Gods sake you keep missing the point of this group. You have separated

your self from everyone here. No matter what anyone comes back with to talk

to you you have some kind of rebuttal. We are trying to reach out to you it

is you who keeps pushing us away. Why do you think we need your long

explanations? No one is passing judgment here. This group is here to love and

support each other, and compare how this damn illness works. I will tell you

one thing I heard tonight. A lady at City Council where I shoot her husband

had a lung transplant 2 months after I had my liver. She told me that stats

are reflecting that if a person accepts what happened to them and to invite

treat the organ as if it were its own and to baby it. That person will heal

better and be stronger than a person who separates themselves. Think about it.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

Genny...

No matter what I say on line, I seem to say the wrong thing. This

group`s 2nd rule doesn`t seem to apply in my case.

If I hadn`t been taking my meds. as directed how does one thinkI have

surrvived 5 yrs. post transplant. The clinic a told me that I have had

one of the more successful recoveries in thier history as far as the

liver transplant goes . If it hadn`t been for drainage tubes I might

have been rleased in 5-6 days, as it was I left on the 10th day post

transplant. I required a very small amount of daily drugs and within a

short period of time was on prograf only, and this at a minimum - 2mgs

bid .they are looking into cutting that down to 1mg as i`m now taking

prednisone for my AIH. I used no pain killes after release and have

taken only those meds. prescribed for me as they thought were needed. No

matter what anyone preceives me to be, I`m far from being ungrateful for

my prolonged life. When I went in for transplant I had reached a point

of peace with my God,

and was fully prepared to die. I already was an inspiration to many who

knew me as an example of what alcohol abuse can do to you. Any who saw

my ravaged body,from endstage cirrhosis, found it hard to believe I was

actualy alive, and my transformation through the transplant is truly a

miracle.This is God`s will.I am fuly cognizant of the gift God has given

me. My faith in Him --- to allow things to be as exactly as they are

supposed to be---has prompted me to follow his will for me. I believe my

main purpose, in return for what I see as living on borrowed time, is

to help a least one still suffering alcoholic. If I accomplish that goal

then my " borrowed time " will not have been wasted.To that end I work

daily. The DAY that I was releasd from the hospital , I came home and,

without unpacking,went to an A.A. meeting,this is God`s will for me.In

the last 61/2 yrs. I have attended nearly 2200 A.A. meetings, and have

talked to thousands of drunks telling my story, I have held various

" offices " and served on various committees and talked at detox centers,

rehabs and jails,telling my story. I am VERY serious about this, as I

feel it`s God`s calling. What I don`t take seriuos is MYSELF and find

humor in many of my life`s experiences. i can`t seem to get that across

to this group.

I REALLY don`t sweat the small stuff,as people say , I am not

depressed nor am I angry as so many analyzers seem to want me to be. I

know how fragile life is, perhaps better than some, which is why I

choose to LIVE it one day at a time. To worry about future events to the

point of daily obssession is useless.I know my life is worthwhile as I`m

doing exactly as God wishes me .He will take me when I`m done. And, just

as reminder that that`s true ,I`ve already told you that i have an

incurable cancer (which in itself will preclude me from further

transplant--- so don`t worry I won`t get someone elses liver-) and whenI

coincidently missed my meds.(for whatever reaons) and my monthly blood

tests showed elevated lfts

it was thought that I was rejecting , but my biopsy actually detected

AIH instead.

I think the abscence of my immuno served to unmask the AIH. So now I`m

on 2 immunos and thats all the meds. I take (save pepcid which I take as

needed to relieve me of distress in the esophagus and stomach that I

ruined) If I don`t die 1st of cancer, i will die of AIH or maybe of an

infection because of my lowered immune system. Any way, I am at ease

because I`m doing as God asks of me.

I do nothing for which I`m ashamed and little for which to apologize.

The welfare of my brothers and sisters are far more important to me than

my own ,and for this reason I tend toward selfdeprecation---

which seems to be misinterpreted.

I was told this group was compassionate

and understanding but you couldn`t prove it by me,as I have been shown

little. In the main I`m ignored on line, talked about off line and when

one wants to tell me what an asshole they think I am they have to go

back on line so all can see, instead of privately.Again I direct you to

your own group rules. I am who I am and just because it doesn`t seem to

fit that image of a noble, suffering patient I find my self trying to

explain myself. Why should I be put in that position, I have at least 2

thingss in common here I have AIH and I`m a human being. And I venture

to guess I have more love, tolerance, and compassion than many here

profess. Practice what you preach.Lest any read into this message

imagined anger , depression or whatever I will repeat theres not-----

it`s starting to border more on sorrow and sadness. I said before I have

very thick skin and can take whatever misconceptions one has, for what

ever reasons, but I hope this will be the last time I try to explain

myself . If I stick around I hope I`m treated as the others here,no

matter what you personally think. I `ve tried to offer experience,hope,

humor,and a sympathetic ear and if you`re REALLY reading my posts you

know this is true. y irreverant (to you ) ramblings hurt no one but me.

True to my God and myself,

Jerry

AIH

MM patient

trans. 95

Jerry, I don't think we have ever talked but I have read many of your e-mails

and the ones sent to you. If I may put my two cents worth in I think what

most of us are concerned with is you not taking care of yourself. Not

wanting to step on any toes but yes you were given a second chance and their

are a lot of people out there waiting for a liver. So please take care of

yourself and take your meds as directed. We don't want to lose you and we

don't want that transplant to be in vain. I hope you take this in the manner

in which it was intended. God bless and have a good night. Genny/Jodi's

Mom/AIH

Florida

[Guest guest]

you`re right , I`m wrong. I `ve already bowed once to your obvious

superior insight and intellect. I`m not fighting any one, I`ve only

tried to explain me. I again ask only acceptance for who I am...... no I

don`t . IT`s you that should examine yourself . you profess one thing

and do another . You don`t even know what love is, your

narrowmindness,bigotry, and self importance gets in the way. The disease

you suffer does not give you any special knowledge or courage over that

of 6 billion other people that face life each day . that they don`t look

at it with your unique advantage is too bad, This place is starting to

drain my serenity perhaps it`s because my expectations were to high .

(pg 452 in the big book) I read daily of the pain and suffering you all

go through

does it occur that my symptoms are the same , my problems may be the

same., I choose to live differently , It seems illegal that I may be

content with the way life is at this moment Because that just the way it

is. I don`t whine about all the things that are happening ... I may not

like them and I can complain but I accept them. I don`t have the hope

of looking for another lifesaving transplant , I accept it . I too gayle

have had a transplant I thank God EVERY DAY It`s His grace . Being

transplanted doesn`t give me any special license to go around acting

the kindly old sage dispensing wisdom to this poor soul or that, that it

seems to give you. Youre the one I was talking about when I said some

need to get over themselves. I`m more than willing to bet that I

suffered more physically waiting for transplant than you ever did ,not

that that means anything, ON the other hand I didn`t even expect the

mirracle to really happen and didn`t spend even thos days obssessing

over it`s arrival but rather worked even then on what I saw as God`s

will for me,. I WAS A POWERFUL Visual example to the damage alcohol can

do to you. Post transplant... the TRUTH is I don`t need any special will

power, dedication sacrifice whatever .... as you put it " gladly force

down all those meds if it means living. The TRUTH is I hardly have to

take any meds. for it at all. 2@mg bid every day (or less maybe) albeit

for the rest of my life. Its not that hard .I have to piss more than

that each day and that takes longer. I know people who Have to inject

themselves several times a day in order to stay alive that are no more

courageus or wizened or in sightful than I. They just do it. The TRUTH

is I`m not bitter nor angry,nor depressed , nor stupid, nor adolescent

nor sociopathic nor am I self pitying,self agrandizing,self important.

Until this very moment I have never in the last 7 yrs. judged any one

else or told them how to live or how to die. It`s not up to me to say

what is right and what is wrong I`m not God and NEITHER are you. I

could take you to an A. A. meeting

and show you more love in an hour than you`ve shown me in these last 3

wks. What a hypocrite. Your trying to help me, I didn`t even ask for

help, I came on line

to find out what I could about something I had never heard of before, I

wasn`t scared, desparate,depressed or looking for a cure... just curious

..The 1st thing I get is SOMEONE lecturing another on the evils of

smoking and in such a manner as that someone was the end all Guru of

man. This other person, who I sinced learned was an old and respected

member. QUIT because of the manner in which she was being berated. That

should have given me a clue, Because I was new and came off heavy handed

in her defense I immediately came under scrutiny and was put down

,attacked,analyzed, even called names on line in direct conflict with

your own rules and have not been allowed up from the canvas since .Now

I`m told that all youre trying to do is help me because poor little,

sorrowful,angry resentful ,depressed me is clueless... What a bunch of

bullshit.

You better look up love, compassion kindness,altruism,understanding and

group in the dictionary. Mean and spiteful

fits you far better than it does me. Keep weeding out your flock, Gayle

soon youll have only followers . who`ll know you as the great OZ.

Dorthy, here, is granting you your wish, clicking her heels ,REMOVING

herself from irritation,and returning to the serenity of Kansas .. mean

Ohio...GO BUCKS

I can`t help having a certain pity

JERRY

[Guest guest]

jerry,

hi. my name is rhodette and i just joined the group. iam not sure whats

going on with you and the group, but it seems to me that your a nice person.

i have so many questions that i have no answers to. maybe you can help me.

thanks

[Guest guest]

I agree with Cheryl. Being 3 1/2 years post transplant I value every day so

much and if it were not for those precious immunosuppressants, I would not

be here now, and for you to miss meds or to take them off schedule , it just

makes me sick to see the jepordy you are putting your precious gift of life

in. Sit back and re~evaluate what this gift means to you and if you want to

keep it, seek help and take your meds as scheduled.

I have a friend who has been waiting for 2 1/2 years for a liver, she has

PBC and has 2 young kids, and she would give anything for a chance at a new

life with a new liver! Please take care of your gift Jerry!

I am praying for you! Lori C.

Re: [ ] Jerry:

>I suppose, as if I just listened to

>my doctors advice, or yours for that matter. I am not the best patient

>in te world when it comes to taking my meds.

>In fact when the blood test that showed my liver functions elevated it

>was though that I was showing signs of rejection of my transplnt,

>because I have a history of forgetting to take my prograf regularly.The

>Cleveland Clinic was very upset with me but the biopsy revealed AIH

>instead. I don`t knw which is better AIH or rejection...I suspiscion AIH

>because they can control it better...oh welll.

>

>

>Ok Jerry, now you have my ire up and I will most probably upset some on

the

>list with my following comments. To those, I apologize in advance...

>

>TO Jerry: I read with great concern and sorrow the nonchalant way you

take

>your meds and then have the audacity to complain about how you feel. Life

is

>tough enough without having to include the regime of meds that a

transplant

>entails. When you received that gift of life, you made a commitment to

>protect it and try to live life the best way you could given the second

>opportunity you were afforded. To gamble away this opportunity you

received

>(not taking your meds on schedule or worse forgetting) while so many are

>dying while waiting for an organ is irony. It is this attitude by people

>like you that makes trying to increase donations difficult.

>

>I know from experience how thorough and complete Cleveland Clinic screens

and

>counsels their patients. The transplant team there is top notch and go far

>beyond their jobs to assist their patients. To be non compliant is just

>ludicrous to me. Just read in this group how many are waiting who would

>welcome the opportunity to have a transplant to help them go forward with

>their lives. The analogy I see here is like the people who have kids and

>then just ignore or abuse them while there is a list a mile long of people

>waiting to adopt and love a child.

>

>I hope you step back and reevaluate the gift you were given and take the

>appropriate measures to insure you do all you can to make sure you keep it

>healthy. If you need assistance with depression, Dr. Locala, Carol ,

>and any of the doctors or transplant coordinators are there to help you.

>All you have to do is ask-- they arent judgmental, they are there to help.

>

>Playing " Russian roulette " with your meds sounds almost like a cry for help

>from you. I hope you seek the treatment you need.

>

>If you went to the Cleveland Clinic, I would assume you are near me. I

would

>love to meet you personally and see what the heck is going on.

>

>I didn't go through days of evaluation and then 12 hours of surgery so

Randy

>could play cat and mouse with his life. He takes his meds as scheduled and

>perhaps that is why we are doing so well. His recovery is ahead of

schedule

>and continues to improve. I was his living liver donor and have never

>regretted my decision to donate. However, if you had been my recipient, I

>would be wondering about now, was it worth it.

>

>Cheryl Blechl McCullough

>

>

>

[Guest guest]

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.

[Guest guest]

Jerry, I think you misunderstood my e-mail. I was telling you I am worried

about you missing your meds. Your life is as important as anyone else's and

I am very glad God is using you for his glory. I am not worried about you

getting another liver, as a matter of fact if you need another one I pray you

get it. It most be very hard not to drink but you have day by day over come

that. I do not judge you and hope you don't judge me because we just don't

know one another. I was just trying to let you know I am concerned. That is

why this is called a support group. I want to be friends with everyone in

this group. I am not the one who has AIH but I see what it is doing to my

daughter and would not wish it on anyone. Hope this starts us on a clean

slate. God bless, Genny

[Guest guest]

Good Morning Everyone,

I am asking the following from everyone. Jerry has been having causing quite

a stir with his post. We have lost some great members because of this, So I

am asking everyone to ignore his rebutal statements. We all know what a

wonderful supportive group we are. And we all need each other, and none of

us need any added stress of negativity.

We have had some great post lately, lots of love shown for everyone, but

that should surprise no one...that is what we do best on this support group,

LOVE EACH OTHER. The information has been fantastic. I am adding the

information to my Health page. And I am still praying for everyone. I will

become more active when I finish my classes...Becoming a WebDesigner is both

exciting and time consuming. I should be an expert when I am done. LOL...I

have 3 classes but whose counting.

Keep up the good work everyone, stay postitive and most of all....Belly

Laugh, it is healing.

Love ya'll, have a great day, remember to laugh all day. Laughter is music to

the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy,

especially love a lot, the more love you give the more you get in return.....

Joan, List Moderator

Florida

AIH, 1 Gall Stone, HBP

Fox

<A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's Den</A>

<A HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A>

Foxy's Health

<A HREF= " http://www.foxdianasden.com/health.com " >Foxy's Health</A>

<A HREF= " http://www.foxdianasden.com/health.com " >

http://www.foxdianasden.com/health.htm</A>

Liver Support

<A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver Support</A>

<A HREF= " http://www.foxdianasden.com/liver support.htm " >

http://www.foxdianasden.com/liver support.htm</A>

[Guest guest]

gayle . . . . . .. .. ... ... .... ...... ......... ..........

...... ..... .. .... ... ........ .............. .... sighhhhh h

h h

. . .. . . . . . . .

[Guest guest]

Genny I`ve understood everyones post.

I know you and some others are genuinely concerned, thank you. Some

people`s pomposity and sanctimoniousness are getting under my skin , a

character flaw I`m trying to eliminate. I apologize to you personally

for any discomfort I`ve caused.

I assure you I have taken good care of and put to good use " my gift " .

jerry

[Guest guest]

Jerry,

It seems to me you have it together. I really see no problem. Thank you for

sharing with me. I drank all me life and no its catching up with me. I was

told I had hep c 3 years ago and did nothing about it. I didn " t no how

serious it would become. They dont no how I got it scince I didn " t do the

common things that causes it. Then on top of that I drank, which made things

worse. One day it all came tumbling down. They say my liver is working

between 10 and 20 percent. I don " t have much thats good, I guess. I haven " t

drank scence April when all this started. People ask how did you do it, I

just tell them I want to live. I have 3 kids and a husband. I not ready to

go yet. Like you, I don " t get depressed or mad. I did this to my self. You

just do what you can and move on. God too has help me along the way. Power

is in prayer. If you could tell me a little about the biopsy, It would help

alot. Thanks for listening. Rhodette

[Guest guest]

Jerry,

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

Shireen

>From: gefox@...

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>Subject: Re: [ ] Jerry:

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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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[Guest guest]

Thanks so much Rhodette....

I have many friends and aquaintances in A.A. who suffer from Hep C. It

seems to go with the territory Most are scared and bewildered as some

have many years of sobriety and have just been diagnosed...it seems Hep

C can lay dormant for periods of time and then comes to light.It can

lead to all kinds of liver diseases from cancer to cirrhosis . I`m

actually fairly ignorant of it, but there has been some good info on

this site .Ginger in Fla. has posted all kinds of terrific information

that must have taken hours and hours of research and we all owe her huge

thanks.Thank You.

AS far as biopsy ... I can only tell you my experiences.... I`ve had

4... the 1st two were in `93 and `94 when I was in ICU

and I don`t remember any thing about them except the latter confirmed

end stage cirrhosis... and I was given 6mos-to a year. My 3rd was

post-transplant while I was still in the hospital . The whole thing was

slow moving I laid on a gurney for what seemed like hours, they did it

from the front with an ultrasound assist , they moved with extreme

caution and slowness as I had just been transplanted.

I watched the whole thing. They had to go in twice `cause they didn`t

get enough the first time. I remember it a being uncomfortable

(especially because of the length of time they took) it had an eerie

indscribable feeling (again because of how slowly they moved) But I

don`t recall any pain.I was injected wih lidocaine or something like

that and IV`d with some light sedative like valium or something.I never

was asleep but as I said I watched

the procedure. The last biopsy was 3-4 wks ago and confirmed AIH... it

wa a piece of cake ... It was done at the Cleveland Clinic and the

actual procedure

took less than 15-20 mins. A couple hits of numbing med. a light dose of

relaxer

A quick check with sonar ,the path of insertion was mapped and zip...

snap..

voila a small chunk of live was extracte.

actually it was voila... voila... voila.. they had to stick me 3 times

to get enough sample. It seems because of my transplant my liver floats

free in my body and the biopsy needle just knd of bounced off the 1st

two times . they kept me lying down 3 hrs. then released me I wasnt` to

drive that day and told take it easy for a couple more. I felt no

pain.except a little like a bruise around the puncture site for short

while.It was easy. I go in for another in Nov. but Nov. is along way off

and I don`t dwell on nor rarely think about those things that have yet

to happen.

As far as your drinking... You go girl .... that`s wonderful to go that

long without picking up...keep up the good work ... Alcohol is

absolutely death to those with liver disease...peolpe love you and need

you stick around for awhile. The power of prayer is one the most potent

of medicines and many times may do what doctors can`t.... even they

themselves will tell you that. Hold faith in your God and know that

eveything is exactly how it`s supposed to be at this moment and that no

matter what everthing will be o.k.and it will be. I shall pray for

nothing but love and serenity for you and your loved ones.

jerry

[Guest guest]

Thank you Jerry for all your insight. I will also pray for you. Things do

happen for a reason. So we all have to roll with the punches. Talk with you

soon. Rhodette

[Guest guest]

THANKS JERRY, Genny

[Guest guest]

Thanks so much Rhodette....

I have many friends and aquaintances in A.A. who suffer from Hep C. It

seems to go with the territory Most are scared and bewildered as some

have many years of sobriety and have just been diagnosed...it seems Hep

C can lay dormant for periods of time and then comes to light.It can

lead to all kinds of liver diseases from cancer to cirrhosis . I`m

actually fairly ignorant of it, but there has been some good info on

this site .Ginger in Fla. has posted all kinds of terrific information

that must have taken hours and hours of research and we all owe her huge

thanks.Thank You.

AS far as biopsy ... I can only tell you my experiences.... I`ve had

4... the 1st two were in `93 and `94 when I was in ICU

and I don`t remember any thing about them except the latter confirmed

end stage cirrhosis... and I was given 6mos-to a year. My 3rd was

post-transplant while I was still in the hospital . The whole thing was

slow moving I laid on a gurney for what seemed like hours, they did it

from the front with an ultrasound assist , they moved with extreme

caution and slowness as I had just been transplanted.

I watched the whole thing. They had to go in twice `cause they didn`t

get enough the first time. I remember it a being uncomfortable

(especially because of the length of time they took) it had an eerie

indscribable feeling (again because of how slowly they moved) But I

don`t recall any pain.I was injected wih lidocaine or something like

that and IV`d with some light sedative like valium or something.I never

was asleep but as I said I watched

the procedure. The last biopsy was 3-4 wks ago and confirmed AIH... it

wa a piece of cake ... It was done at the Cleveland Clinic and the

actual procedure

took less than 15-20 mins. A couple hits of numbing med. a light dose of

relaxer

A quick check with sonar ,the path of insertion was mapped and zip...

snap..

voila a small chunk of live was extracte.

actually it was voila... voila... voila.. they had to stick me 3 times

to get enough sample. It seems because of my transplant my liver floats

free in my body and the biopsy needle just knd of bounced off the 1st

two times . they kept me lying down 3 hrs. then released me I wasnt` to

drive that day and told take it easy for a couple more. I felt no

pain.except a little like a bruise around the puncture site for short

while.It was easy. I go in for another in Nov. but Nov. is along way off

and I don`t dwell on nor rarely think about those things that have yet

to happen.

As far as your drinking... You go girl .... that`s wonderful to go that

long without picking up...keep up the good work ... Alcohol is

absolutely death to those with liver disease...peolpe love you and need

you stick around for awhile. The power of prayer is one the most potent

of medicines and many times may do what doctors can`t.... even they

themselves will tell you that. Hold faith in your God and know that

eveything is exactly how it`s supposed to be at this moment and that no

matter what everthing will be o.k.and it will be. I shall pray for

nothing but love and serenity for you and your loved ones.

jerry