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Hi Jerry, how are you today? I kept Colton for Jodi this afternoon and they

just left. She seemed to be feeling better today. Yes, someone has to die

for another to get a transplant but the way I look at it they are going to

die anyway and there is nothing we can do about that. My body will not need

the organs in the ground so I don't understand people who do not want to

donate. I felt this way long before I knew Jodi would need a liver someday.

Cheryl was telling me last night about her living donation to her husband

Randy, very interesting. She gave me a number to call to talk to someone

about it and I intend to talk to Dr. Reidy in Miami also. She says Randy is

doing very well. Better check the rest of the mail. Talk to you later.

Take care and God bless. Genny

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Thanks for the info on the Bactrim I forgot that you have had a transplant.

I just get

very discouraged with doctors when they don't realize what they are giving us

and

that it is hurting our liver. Thanks again Jerry,

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It's just that before some people were offended by discussing bowel movements

and colors of stools, they didn't think it was appropiate. We all do it

everyday and color is important apparently they don't have those kinds of

problems. Hugs,

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Excersise and Weight Loss did you say Jerry lol I do good for awhile and get

very irritated when I see a 300lb healthy person sitting down and eating a

hot fudge sundae, when I am hungry I don't care how many diets they put you

on you are still starving. Hug's,

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Jerry,

thanks for the info on red meat and salt. Someone on the list told me to

watch it, so I just wanted to know. I didn't realize that it was more

important when you have cirrhosis.... I am cutting down on salt because of

the water retention with the steroids...don't mind that. Just watching

extra table salt. The red meat would be hard, so I'm not going to do so

until I HAVE to!

thanks, Beth

Re: [ ] Beth to Genny

> Beth...... I really don`t think you have to worry too much right now

> about salt or red meat unless you`re in advancing stages of cirrhosis.

> i.e. you have ascites or edema and/or exhibiting signs of

> encephalopathy. It would be healthier though to cut back some on your

> salt intake and watch your protien consumption, but as long as your

> liver is functioning well enough I wouldn`t worry too much right now.

>

> Jerry

>

>

>

>

>

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  • 3 weeks later...

Hi Jerry, I agree with you all the way. If a liver becomes available before

Jodi gets into to much trouble we would take it. The transplant team has

already contacted Jodi. Dr. Reddy told us it would be four to six weeks.

They were asking her a lot of questions in detail about a living will. I

just found out last night Jodi doesn't want me to be a living donor. She

said if anything happened to me she wouldn't be able to live with herself.

She was telling her Dad this when I wasn't around. Lot of thinking and

praying to do. Hope your having a great Thanksgiving. God bless, Genny

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Genny.... I know Miami is great center. A friend`s brother was

transplanted there 2 yrs, ago and he`s doing great.The clinics

gasto/hep center in Ft. audedale doesn`t do transplants there but rather

refers its patient`s to the main hospital in Cleve, where I had my

transplant, it`s also where Cheryl & Randy had thier living donor Tx.

The first year success rate at the Clinic is now over 90%. I understand

Miami may be the same. What I`m saying is transplant is not the big

fearful thing it sounds like but rather a solution to one`s liver

disease. God will provide.

Jerry

Hi Jerry, I agree with you all the way. If a liver becomes available before

Jodi gets into to much trouble we would take it. The transplant team has

already contacted Jodi. Dr. Reddy told us it would be four to six weeks.

They were asking her a lot of questions in detail about a living will. I

just found out last night Jodi doesn't want me to be a living donor. She

said if anything happened to me she wouldn't be able to live with herself.

She was telling her Dad this when I wasn't around. Lot of thinking and

praying to do. Hope your having a great Thanksgiving. God bless, Genny

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Yes Jerry, I don't think Jodi's worry is the transplant itself but how long

until the AIH attacks the new liver. I told her just think positive, no one

knows for sure. She may be one of the lucky ones that God smiles on and

never has another problem. Wouldn't that be great, wish that for everyone in

this group. Genny

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Dear Jerry.

You seem to have a lot of information about the FL contacts I may want to

try to reach. My diagnosed AIH have progressed to severe cirrhosis and I

really don't find anyone here able to talk about transplants..I'm 45 with 2

kids and their dad just died from celebellar malignant tumors last year.

Please try to contact me:

dagelo@...

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I had liver tx 3~11~97 I will be glad to answer any questions!! Lori C.

Re: [ ] Jerry

>Dear Jerry.

>

>You seem to have a lot of information about the FL contacts I may want to

>try to reach. My diagnosed AIH have progressed to severe cirrhosis and I

>really don't find anyone here able to talk about transplants..I'm 45 with 2

>kids and their dad just died from celebellar malignant tumors last year.

>

>Please try to contact me:

>dagelo@...

>

>

>

>

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...... I really don`t know too much about Fla. as I live in Akron,

Ohio. There are many people here from Fla. who go to U of Miami, which I

understand is an excellent transplant center. I was transplanted in

Cleveland at the Cleveland Clinic Foundation. CCF is recognized as one

of the top five hospitals all around in the U.S. Depending on who`s

doing the rating it is #1 or#2 in gastroenterology/hepatology and they

performed thier 1st liver transplant in 1984. They are reknowned as one

the leaders in AIH research and were one of the 1st to recogonize this

autoimmune disease. They also are one of the top transplant centers in

the world and are pioneers in living donor transplants (see cheryl and

randy`s story) My surgeon Dr. has won many honors and awards

in the field of liver transplantation and is revered almost God- llke by

his fellows and staff. I am extremely blessed to be a patient of

thiers. They have a hospital branch in Ft. Lauderdale which although it

doesn`t perform transplants refers its listed patients to the main hosp.

in Cleveland. It may be worth checking out. They have a homepage on the

web which I believe is www.clevelandclinic.org

but I found them in search by typing in Cleveland Clinic and I`ve saved

it under favorites (bookmarked) I have a wonderful gastro/hep here in

Akron who refered me to them and U. of Pittsburgh when it became evident

it was Tx or die. My medicaid forced me to CCF and I`ll never be sorry.

I got my doc. here in Akron by referal from the ALF. and I recommend it

as a way to hook uo with a liver specialist.

I see him 4 times a year now and I have monthly blood tests that are

sent to him and the clinic . My transplant team meets every Weds. to

review all patients and they always review my bloodtests and call me

when something is not right. When my

Sept. LFTs were elevated both thet and my local doctor contacted me

immediately and I was at the clinic for biopsy within 4 days. Hence the

AIH Dx. I was put on prednisone 30 gms. and am now on 10mgs indefinetly.

I get bloodwork weekly and a transplant coordinator calls me weekly. I

get blood drawn tomorrow and am looking anxiously to the results as I`m

in the midst of my 2nd cold in a month and 3 people have told me I look

jaundiced.....hmmmm. As far as Miami goes the peope here from Fla. can

tell you what you need to know. As I said a friends brother was tx`d

ther and talks very highly of it. Sorry for the length but that`s one of

my character defects.

Love and serenity

Jerry

Tx `95

AIH 00

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Jerry,

Thank you so very much for your info...in fact, I will be going to Miami to

visit with the team in Feb. Stay in touch with me. Your heart is so full

of help and love,

denise

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Hi Jerry, as you may have already read my post to Rosemary Jodi heard from

the team today. Dr. Reddy had already given Jodi a list with the tests she

needed to have done prior to getting on the list. A dental exam was one of

them and we all laughed since Jodi and I both work at a dental office. Since

we are considering a living donor transplant they are moving things right

along. Will be spending two days in Miami the week before Christmas to take

some kind of classes. Guess I will know a lot more when we get back. Take

care and have a good week end. Genny/Jodi's Mom

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Thanks for the well wishes Jerry. I knew blood type matters but size most

matter too because Jodi said I would have to have a scan to see how big my

liver is. It seems to me the bigger my liver the more of it they would be

able to give to Jodi. Does that sound dumb? Well, we will know a lot more

soon. Take care and hope you are feeling good. God bless, Genny

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Genny.... I could only speak from my experience and that is what I was

told about receiving a whole liver from a donor...... but I`m glad to

see Cheryl`s post explaining live donations. It makes more sense that it

may be more complicated that way . Thanks Cheryl if you`re reading this!

jerry

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Cheryl.. I have MSN instant messenger service. I can`t exchange

messages with AOL users, but AOL users can get on MSN by conacting

http://messenger.msn.com and downloading it for free

which enables me to exchange messages. Webtv isn`t very compatible with

AOL. In fact AOL seems to be pretty finicky. When I send some forwards

to friends with AOL they sometimes can`t open them and vice-versa.

Jerry

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Jerry, I don't look at it that way. The person that donated the liver was

going to die and there is nothing you could do about that. We all have our

time and only God knows that time. The donor was a good, giving person who

knew they would not need their organs after death. I decided to be a donor

years ago and don't understand why all people wouldn't want to be one. Genny

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In a message dated 12/10/00 3:23:14 PM Pacific Standard Time,

Babycolt98102690@... writes:

<< Jerry, I don't look at it that way. The person that donated the liver was

going to die and there is nothing you could do about that. We all have our

time and only God knows that time. The donor was a good, giving person who

knew they would not need their organs after death. I decided to be a donor

years ago and don't understand why all people wouldn't want to be one.

Genny >>

This reminds me that one of the things I need to find out is whether AIH

precludes me from donating organs.

Harper

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Harper that depends... you got any good parts?

In a message dated 12/10/00 3:23:14 PM Pacific Standard Time,

Babycolt98102690@... writes:

<< Jerry, I don't look at it that way. The person that donated the liver was

going to die and there is nothing you could do about that. We all have our

time and only God knows that time. The donor was a good, giving person who

knew they would not need their organs after death. I decided to be a donor

years ago and don't understand why all people wouldn't want to be one.

Genny >>

This reminds me that one of the things I need to find out is whether AIH

precludes me from donating organs.

Harper

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In a message dated 12/10/00 8:36:35 PM Pacific Standard Time, gefox@...

writes:

<< Harper that depends... you got any good parts? >>

I could answer your question more to your point if I could see the previous

correspondence, see what you were responding to. On its own, to the question

" You got any good parts " -- my parts were a lot better before May. I spent

the weekend before I learned I was ill staking out a brushey construction

site and making plans to learn to kayak. Nowdays, a walk down to the

neighborhood coffee shop is a fairly large event. However, I'm very

fortunate and expect to make a good recovery. I think Prednisone is what's

slowing me down physically (and mentally), as opposed to AIH itself. But

thank God for Prednisone.

Harper

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In a message dated 12/11/00 9:50:35 AM Pacific Standard Time, gefox@...

writes:

<< you asked me about my wife 2 days after I sent you mail telling about

her..... oh well... I`m new to cyberspace and get confused just by natural

causes.

Jerry >>

Yes, the timing does seem strange. Your message about your wife was not in

my e-mail last night but appeared this morning.

Harper

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Harper....it was an (weak albeit) attempt at humor in reponse to your

querie as to AIH patients being eligible for organ donor.

Sometimes I wonder if all my posts are read..... I sent quite a few

pointed in your direction and frankly some of the responses seem to

jump....it may dpend on how we open our mail..... i.e. ... you asked me

about my wife 2 days after I sent you mail telling about her..... oh

well... I`m new to cyberspace and get confused just by natural causes.

Jerry

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