Re: Jerry

[Guest guest]

It does happen! Barbara who was on this list for awhile is like 6 years post transplant and she has reoccurance, and at my biopsy in March 2000, said I had some infiltrates and they told me at Mayo in 1997 when I had my transplant, that out of all the liver transplants they had done due to autoimmune hepatitis, they only had 1 reoccurance and that was to one man. So it does happen, but the odds are very low!!

Lori C.

Liver TX 3~11~97

Re: [ ] JerryIn a message dated 2/1/01 7:44:46 AM Pacific Standard Time, aab1@... writes:

I don't think that they know enough about autoimmune diseases to say that my immune system would attack a new liver, what's your thoughts on that? Any more questions just ask. God Bless, Audrey from Pa.I can't remember the statistics I've read on how often AIH reoccurs (or sometimes occurs for the first time) following a transplant, but it does happen. Back in September, I found one medically sponsored website that said AIH recurrence after a transplant had never been known to occur, and the next, equally reputable, website I opened was about frequency of occurence! That was when I began to realize I cannot " trust " any doctor to be right; there is so much conflicting information that even a well trained, well intentioned doctor might be mistaken. I need to learn all I can myself and compare it with my doctor's statements, looking for discrepancies. Harper

[Guest guest]

All..... I had transplant in 1995 for alcoholic cirrhosis. Last Sept. my

monthly blood work showed elevated LFTs . Fearing rejection my Tx team

had me come up to the (Cleveland)clinic for a biopsy and some other

tests . My biopsy confirmed AIH. As I am not in a risk group for

that....male, no history of autoimmune disease in my family... the Hep.

opined it may have come from blood received from the many transfusions I

had in `93,94 `95 due to variceal blood loss. or it may have come with

the donor`s liver itself and my body triggered it., they don`t know. My

research has told me that reoccurance of AIH post transplant is not only

possible but perhaps even probable for those with AIH.

We must remember that transplantation is but a means to prolong life

and getting one doesn`t guarantee another 10-20 yrs. or even 5. They are

getting better and better at it though.

Jerry

It does happen! Barbara who was on this list for awhile is like 6 years post transplant and she has reoccurance, and at my biopsy in March 2000, said I had some infiltrates and they told me at Mayo in 1997 when I had my transplant, that out of all the liver transplants they had done due to autoimmune hepatitis, they only had 1 reoccurance and that was to one man. So it does happen, but the odds are very low!!

Lori C.

Liver TX 3~11~97

Re: [ ] JerryIn a message dated 2/1/01 7:44:46 AM Pacific Standard Time, aab1@... writes:

I don't think that they know enough about autoimmune diseases to say that my immune system would attack a new liver, what's your thoughts on that? Any more questions just ask. God Bless, Audrey from Pa.I can't remember the statistics I've read on how often AIH reoccurs (or sometimes occurs for the first time) following a transplant, but it does happen. Back in September, I found one medically sponsored website that said AIH recurrence after a transplant had never been known to occur, and the next, equally reputable, website I opened was about frequency of occurence! That was when I began to realize I cannot " trust " any doctor to be right; there is so much conflicting information that even a well trained, well intentioned doctor might be mistaken. I need to learn all I can myself and compare it with my doctor's statements, looking for discrepancies. Harper

[Guest guest]

Audrey... I think you threw me when you said " autoimmune cirrhosis " As

Cheryl noted " cirrhosis " is the end stage so to speak of many liver

diseases such as autoimmune hepatitis....the hepatitis resulted in

cirrhosis.You still have autoimmune hepatitis.

I am very familiar with the complications of cirrhosis..Ive had every

one ...from ascites, varices and encephalopathy to spider veins, palmar

erythema,testicular atrophy and gynomastia (sp?) i.e. breast development

to loss of body hair and the wasting away of my musculature. If it is a

complication of cirrhosis I`ve had it. I`ve taken aldactone

(spironolactone) and lasix lactulose (duphalac),blood pressure meds,

neomicin and various other antibiotics,vit. K,and other vitamins, and

probably some I`ve forgotten . I`ve been endoscoped and sclerosized

12-20 times. I was hospitalized at least a dozen times or more, I had

maybe 15 different transfusions, I had paracentesis 4 times.

All these were treaments for my complications not the cirrhosis... the

treatment for that was cessation of my drinking. The point being I stil

don`t understand the use of aciphex. If you were to develop varices the

aciphex won`t help them they are caused by the pressure built up by the

backup of blood that can`t pass through your liver due to scarring

(cirrhosis). Aciphex is an antiacid used for ulcers and GERD

Is your doctor using the water pills, lactulose and blood presure pills

as prophlaxses or do you have ascites and varices? Many times rectal

bleeding is caused by hemorrhoids another complication I was fortunate

to have.

The prednisone and imuran are treatment for the hepatitis not the

cirrhosis. It is an effort to alleviate the cause of the cirrhosis and

slow it`s progression.

Of course your immune system will attack your new liver....it is a

foreign body. You would be on anti-rejection meds. daily for the rest of

your life. I take prograf twice a day. Some take other meds as well.

However if you really mean will autoimmune hepatitis reoccur...I don`t

know . I`ve researched it and I`ve seen some that say it is not only

possible but probable.

love and serenity

jerry

Hi Jerry,

Thanks for your concern. I was diagnosed 10-99 after routine blood

work. I had been fatigued for months. I was sent to a local gastro and

I had a C-Scan and Endoscope and blood work done twice a week for a

month. The diagnosis was Autoimmune Cirrhosis. I never drank or

smoked. I was in bad shape by then, I could hardly sit up, let alone

walk and I was confused and could not concentrate. He sent me to

Pittsburgh to Dr. Shakil at the Liver Center. I had an Ultra-sound and

a liver biopsy, which confirmed Autoimmune Cirrhosis. He said that I

had had Autoimmune Hepatitus for years and it never showed up in blood

work, I had plenty of blood work done over the years because I worked in

a hospital. I guess that is the mystery of Autoimmune diseases. The

only symptom that I had over the years was fatigue, but with working and

raising kids no one thinks anything about it. Therefore I started on

all of my meds. I guess that my endo showed that the vessels were O.K.

at the time, that is the reason for the aciphex. The Spironolactone is

a water med. I started at 60 prednisone and now I'm down to l2.5 and

l00 immuran. The lactulose is helping with the memory loss and

confusion, but I still am very forgetful. The only bleed that I have

had was rectal about l month ago, it was a lot. I called my Dr. and he

said go to the local E.R. immediately, which I did and they got it under

control. As far as a transplant, he said it will be down the road, but

he won't say when. I don't think that they know enough about autoimmune

diseases to say that my immune system would attack a new liver, what's

your thoughts on that? Any more questions just ask.

God Bless,

Audrey from Pa.

[Guest guest]

In a message dated 2/9/01 8:20:27 AM Pacific Standard Time, mclaffey@... writes:

I told my husband yesterday he can call me his little cockaroach.

Just like him you can't get rid of me!!!!!!!!!!!!!!!!!!!!!!!

Thank you ALL for your wonderful words.

Joan Claffey

NJ

We're very happy for you. Isn't it great to be looking ahead without so many reservations?

Harper

[Guest guest]

Joan... I guess he was premature in taking out that extra life insurance

policy.

Again.. great news.... I hope it`s catching.

jerry

I told my husband yesterday he can call me his little cockaroach.

Just like him you can't get rid of me!!!!!!!!!!!!!!!!!!!!!!!

Thank you ALL for your wonderful words.

Joan Claffey

NJ

[Guest guest]

Jerry

Thanks..I will try that..

Tys RA is acting up...having trouble walking with out alot of pain....This kid just can't get a break....also his mouth is full of sores...he usually gets a couple but this time he is a mess...has them on the tip of his tongue and underneath and on his cheeks...Right now the only good place is the roof of his mouth..The stuff he usually uses is just not working this time...Just don't know what to use...

He goes to GI next fri....but that is a long wait when your mouth feels like this...I am calling the hosp today to see if they have any other suggestions...

Thanks again Jerry.

Luanne Ty's mom

[Guest guest]

Sorry Ty is having such a hard time.

Harper

[Guest guest]

Debbie.... I`m praying for 70 painfree years for Tommy.... I`ve lived

most of my life but I`d like another 20 if its God`s will. Take care of

Tommy..

Jerry

Jerry,

You are one of a kind. Here's for hoping for a non painful 20 years! Keep

smiling and thanks for all your support.

Debbie (Tommy's Mom)

--- Have a fun day!

--- debbiehenry@...

---

[Guest guest]

congratulations jerry!!!!! very happy for u.....u deserved it cos u are such

a good person!!

take care

karishma.

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Wow, that was uncalled for

On Sun, 25 Feb 2001 19:06:42 -0400

, wrote:

> Jerry,

> This might be hard to do because you don't know what I look like. But

> just use your imagination and you can either picture me as a super model

> or any other beautiful woman. Now picture me with my hand over my ears

> and you telling me cirrhosis can't be reversed (back to me) I am

> repeating " I can't hear you " " I can't hear you " So now can cirrhosis

> be reversed. Yes, you say....that's a good boy. I know what I know and

> I want you to know what I know and then we will both know!

> Joan Claffy

> NJ

_______________________________________________________

Send a cool gift with your E-Card

http://www.bluemountain.com/giftcenter/

[Guest guest]

Joan......speak to the hand..... which of course you can`t because I`m

picturing you with your foot in your mouth.

Jerry

[Guest guest]

Hi Jerry: Yes, it has been a while since we've talked. I work full time now

and there just isn't enough hours in the day. Thanks for the well wishes and

if it's the Lord's will I also hope to one day say well its finally over and

Jodi and I are perfectly fine. I'm sorry I haven't been able to read how

everyone is but there are so many new names in the group now that I can't

read every post. Hope this finds you doing well. Take care and God bless.

Thanks for all the prayers. Genny/Jodi's Mom/Transplant List

[Guest guest]

Hi Jerry: How are you tonight? I'm doing pretty good, happy about having

tomorrow off. Can't believe we got a little rain earlier but not enough to

do much good. It is so very dry in Florida and the fires are killing us with

the smoke.

Just wanted to say hello and take care. Genny

[Guest guest]

Cheryl.... The 12 steps of AA can be used (and are) by anyone. They give

an outline on how to live. Substitute anything for the word alcohol and

the rest of the steps can do nothing but increase ones grasp on life.

Lack of humility that is my dilemma but I`m working on it. I know that

you know that you can`t help your daughter and you must never blame

yourself....she`ll blame everyone and everything for her

problems...that`s what addicted people do and as you said until she sees

and admits her own powerlessness all you can do is not enable her. You

can`t change people,places or things only your actions or reactions to

them.... accept the things i can`t, change those i can and ability to

know the difference.

My girls are 24, 27, 28, and 30... jeesh!!!

I`m geting old before I`m ready..... 58 TODAY.

love

jerry

[Guest guest]

Cheryl .. she thinking she can drink is pure bullshit.... if nothing

else she`ll be back to drugs soon and then she`l have 2 problems...

she`s lying to herself and can`t do anything until she gets honest... I

really feel for you and especially your granddaughter.... addicts are

too selfish to know the real wreckage they cause it`s only about

themselves... have you thought of gaining custody? A bum for a husband

or father is absotutely no excuse for her to be the way she is..i hope

she comes to before it`s too late.

jerry

[Guest guest]

As far as the LFT levels I don`t know. They definitely are high, but I`m

not a doctor, Do you show any signs of worsening liver

disease....ascites. varices, edema? That would probably be more

significant, I think?

Jerry,

What do you think about the levels of my ALT 122, AST 118, and ALK PHOS

451. They have been unchanged for about two months now. They were at one

time (in order) about 500, 450, and 1500. I'm not sure how bad those

highs are. They came down quite significantly at first but then just

hover. My bilirubin has stayed within normal, which is good. Anyway, I

just want to know what you think. Obviously, my doctor is concerned

since he's doing the ERCP. Thanks for the latest postings--quite

informative as usual. I'll tell you, it's really hard to watch my

daughter destroy her health as I'm trying so hard to be healthy. She

spent the day at her friend's house with a hangover. She says she can

drink since she was addicted to drugs not alcohol. Yet, she can't

tolerate alcohol; she's got an ulcer. She is supposedly quitting

smoking, yet she hangs around smokers constantly. She took her daughter

around her heavily smoking friends for several hours Friday. Now Jasie's

cold is worse; she's developed a cough. My daughter says if Jasie gets

so sick she has to go to the hospital, then she will quit taking her

around cigarette smoke. As she says, she has lots of friends who expose

there kids to smoke and they are all OK. She drives me crazy. I am

learning to accept that I can't do anything about her addiction (thanks

to 12-step), but I can't let go of the mess she makes of Jasie's life. I

have cared for her like she is my own daughter. I've bonded with her and

she with me. somehow failed to bond as a mother should (probably

a combination of the father abandoning her and her subsequent

addiction). Well, thanks for listening. LOL, Cheryl ID

[Guest guest]

Happy birthday, Jerry!

Harper

[Guest guest]

Happy Birthday Jerry! You have brought great knowledge to our lives.

Debbie (Tommy's Mom)

> [Original Message]

> From: <gefox@...>

> < >

> Date: 3/4/01 4:04:15 AM

> Subject: Re: [ ] Jerry

>

> Cheryl.... The 12 steps of AA can be used (and are) by anyone. They

> give

> an outline on how to live. Substitute anything for the word alcohol

> and

> the rest of the steps can do nothing but increase ones grasp on

> life.

> Lack of humility that is my dilemma but I`m working on it. I know

> that

> you know that you can`t help your daughter and you must never blame

> yourself....she`ll blame everyone and everything for her

> problems...that`s what addicted people do and as you said until she

> sees

> and admits her own powerlessness all you can do is not enable her.

> You

> can`t change people,places or things only your actions or reactions

> to

> them.... accept the things i can`t, change those i can and ability

> to

> know the difference.

> My girls are 24, 27, 28, and 30... jeesh!!!

> I`m geting old before I`m ready..... 58 TODAY.

> love

> jerry

>

>

>

[Guest guest]

Jerry,

Happy birthday, and many more to you!!!

nne

> Cheryl.... The 12 steps of AA can be used (and are) by anyone. They give

> an outline on how to live. Substitute anything for the word alcohol and

> the rest of the steps can do nothing but increase ones grasp on life.

> Lack of humility that is my dilemma but I`m working on it. I know that

> you know that you can`t help your daughter and you must never blame

> yourself....she`ll blame everyone and everything for her

> problems...that`s what addicted people do and as you said until she sees

> and admits her own powerlessness all you can do is not enable her. You

> can`t change people,places or things only your actions or reactions to

> them.... accept the things i can`t, change those i can and ability to

> know the difference.

> My girls are 24, 27, 28, and 30... jeesh!!!

> I`m geting old before I`m ready..... 58 TODAY.

> love

> jerry

[Guest guest]

Hi Jerry...

Heres some good news...Ty is feeling better everyday...and hoping to get back to school and catch up with alot of work....alot....

Thanks for your prayers....

He is a great kid if I don't say so myself....

More good news to following in the next couple of weeks....How is that for POSITIVE THINKING....

Be well...

Luanne Ty's mom

[Guest guest]

That`s what we like to hear! He`s probably a terrific kid `cause he`s

got a terrific mom. I think about you and Ty every day. I just know

everything will turn out o.k.

May God bless you always...

Jerry

Hi Jerry...

Heres some good news...Ty is feeling better everyday...and hoping to get back to school and catch up with alot of work....alot....

Thanks for your prayers....

He is a great kid if I don't say so myself....

More good news to following in the next couple of weeks....How is that for POSITIVE THINKING....

Be well...

Luanne Ty's mom

[Guest guest]

Hi Jerry,

I will be doing mucho praying for your Mom. You are such a help to all. Know that you are appreciated.

Rosemary

[Guest guest]

Jerry: Thanks a lot for the kind words. I am calling Miami again in the

morning since I didn't hear from them today. The transplant coordinator said

the surgeon doesn't think the cyst will pose a problem if the liver is large

enough.

Jodi had to go to the doctor again yesterday with pain in her side. He

said it was fluid build up and told her to take an extra diuretic. I sure

hope that's all it is but she said the pain had stopped so maybe it was.

How are you feeling this week Jerry? Hope things are looking up for you

too. Better check the rest of the mail. Take care and God bless.

Genny/Jodi's Mom

[Guest guest]

I hope your mom is on the way to recovery.

Prayers for your family, April

Re: [ ] (unknown)

> Jerry,

>

> my prayers are with you and your mom,

> keep us updated,

>

> (Sierra's Mom)

>

>

>

>

> --- gefox@... wrote:

> > dear friends... i`m asking that you offer prayers

> > for my mother... i

> > took her to the hospital today...she has pulmonary

> > edema from either a

> > heart attack or heart failure and she is in coronary

> > care. I know that

> > prayers do work and I know that this group will help

> > mom.. thanks

> > everyone...

> > love and serenity

> > jerry

> >

> > btw... i got back my second good report in row

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

How's your Mom Jerry? I a keeping her in my prayers.

Rosemary