Barbara

[Guest guest]

Barbara Ann,

Since you live in Arlington, I would love to do lunch one day and get some

tips from an old pro.

Also, who are your doctors. I have been going to Dr. Tarnaskey, but

have an appointment on the 15th with a Dr. Malet at UTSW. I haven't been

quite sure about how to pick a doctor.

Audra

AIH

[Guest guest]

Hi Audra,

I'd love to meet you, lunch sounds great. I like

everything and anything, so the choice of food is up

to you. In five years, I've only met one other person

(face to face) with AIH, so this is very exciting to

me.

Not having been sick until five years ago, I used to

think all doctors were created equal. Not so.

In my area, the only liver doctors I trust implicitly

are at Baylor University Medical Center. I found out

the hard way that when there is a serious problem, you

need to see the people who have the most experience,

and who are up on the latest treatments and

developments in that particular disease (in this case

liver). I almost died under the care of a local

gastroenterologist. I don't want to bore everyone

with the details, so I'll tell you my experience when

I see you. The doctor at Baylor who diagnosed my

condition, and who I credit with saving my life is

Jeff Crippin, I love him to pieces. I've heard raves

about the other hepatologists on staff as well, I

don't think there's a lemon in the bunch.

I am convinced beyond a doubt that if I had gone to

Baylor from the start I would have received a proper

diagnosis and treatment before my liver suffered any

damage. I waited too long, and my only option to stay

alive was a liver transplant.

I'm not trying to imply that your doctor isn't fully

competent. I'm sure there are doctors not associated

with medical centers who have a great deal of

knowledge and success treating AIH, I just can't seem

to find them.

Let me know when you're available for lunch, maybe

Anita (Mansfield) can join us too.

Talk to you soon,

Barbara Ann

AIH Transplant Recipient

[Guest guest]

Dear Barbara,

I also live close to/in Toronto Canada. I see Dr. Heathcote at Toronto

Western Hospital. I live half in Caledon with my parents (one hour north

west of Toronto) and the other half in Toronto with my boyfriend at

Harbourfront. Nice to meet you!!! This is so crazy!!! is another

member of this group who visits Dr. Heathcote. She's from borough but

I haven't seen her post in awhile. I'm 23...oops, I'm 24 turning 25 in a

month (whoa) and I've had AIH for almost two years. What's your story?

(Sorry, I rarely have a chance to read the posts lately since I'm all over

the map and my boyfriend doesn't have a computer!).

>From: " Barbara Derbyshire " <bderbyshire@...>

>Reply- egroups

> egroups

>Subject: [ ] Re: Barbara

>Date: Mon, 06 Nov 2000 16:21:57 -0000

>

>Hi there Carolyn

>

>As always, you offer great advice.

>

>I live in Toronto, Ontario, Canada & would love to hear from anyone

>living with AIH in Southern Ontario.

>

>And....I'm smiling right now!

>

>Barbara

>

>

> > BlankBarbara,

> > What state or country are you a resident of? Some of the

>people here may be in your area. Keep smiling!...Carolyn

>

_________________________________________________________________________

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

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Hi Barbara, good luck with your biopsy. Genny/Jodi's Mom/Florida

[Guest guest]

Hi Barbara, I think most of us try to be nice. Where in Florida does your

Mom live? I'm in Central Fl about 45 min. from Disney World. Unlike most

people I was born here and all of my family live near by so it's home. Take

care, Genny/Jodi's Mom

[Guest guest]

How thoughtful! Thank you Genny.

(I'm in Canada, but my Mom is in Florida. She says the people are

terrific to her.)

Barbara

> Hi Barbara, good luck with your biopsy. Genny/Jodi's Mom/Florida

[Guest guest]

Naples is a lovely area, we vacationed there about four years ago. I hung a

snook, which is a salt water fish that weighted about 25 pounds off a dock.

I didn't get him in though, he got under the dock and cut my line. It was

thrilling while it lasted, he put up a good fight. My husband would move

tomorrow if I would go, he hates the heat and frankly it is getting very

crowded here in the winter. He would like to move to the Carolina's but I

too would freeze to death. I would like to visit Canada someday, I hear it

is very pretty. It's getting late, will talk to you later. Take care,

Genny/Jodi's Mom

[Guest guest]

Hi Genny

My Mom is a Canadian snowbird. She lives in Toronto May-Oct, Naples

Oct-May. She has lovely friends and thoroughly enjoys her life in the

USA. I doubt she could tolerate a Canadian winter after 23 years

wintering in the sunny south.

Barbara

[Guest guest]

Dear Carolyn

Once again, I am utterly floored by the thoughtfullness I have

encountered in this group.

Thank you so much.

Barbara

> Barbara,

> I just wanted to wish you all the luck with the biopsy, I think

it's this week when it's coming up. I just wanted you to know my

prayers are with you. I may be busy this week and I wanted you to

know I was thinking about you. God be with you...Carolyn...keep

smiling!

[Guest guest]

Thanks !! That test was pure pain....I am also amazed with the modern

medicines, that I couldn't be given something to reduce the stress. I'll

write more later on the results....have a headache from hell. Take care!

Love, Barb

Re: Hello

It has been proven that, in most cases, it is more

harmful to the body to submit it to painful

procedures, than it is to take pain medications. I

believe in eliminating or decreasing the pain in

procedures, as much as humanly possible.

Lee

Barbara wrote:

Hello All! Well I had my endometrial biopsy

today.........felt like I was giving birth all over

again. OUCH!!!! Big time hurt!!! Anyways, I should

have results by Thursday! I will keep you all

informed. Take care!

__________________________________________________

[Guest guest]

Oh but we are only hysterical women! Anything with a womb is nuerotic

remember. (you can thank Frued for that!)

You just think it hurts (if that is the case how come childbirth

hurts, or is that our imagination also!!!!)

>

>

> Hello All! Well I had my endometrial biopsy

> today.........felt like I was giving birth all over

> again. OUCH!!!! Big time hurt!!! Anyways, I should

> have results by Thursday! I will keep you all

> informed. Take care!

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Barbara,

I am still pretty new to this group, but have read some of your posts regarding organ donation. I am still unsure about a few things??? Even though I am diagnosed with AIH, I can still be a donor? I also have other medical problems such has hypothyroidism, would this effect anything? I would appreciate it if you could give me more info.

I am already registered on my drivers license to be an organ donor, but was never really sure of the specifics. Let me know!

Sincerely,

Pam In CT

[Guest guest]

Jerry,

Thank you for your input re: organ donation. I am getting such an education from everyone here. It is amazing!

Sincerely,

Pam

[Guest guest]

Pam.... I don`t know as much as much as Barbara but it seems to me we

have many parts we can donate. Corneas come to mind... hearts,

kidneys,bones, skin etc. As Harper said volunteering is important...

I`m sure when and if the time comes a doctor can decide what parts you

or I have that can be used to help someone else. Let them make the

decision on what`s viable and set an example for others. Just because

one or two things don`t work so well doesn`t mean we`re hopeless cases.

: )

Praying all is well with you...

Jerry

Hi Barbara,

I am still pretty new to this group, but have read some of your posts regarding organ donation. I am still unsure about a few things??? Even though I am diagnosed with AIH, I can still be a donor? I also have other medical problems such has hypothyroidism, would this effect anything? I would appreciate it if you could give me more info.

I am already registered on my drivers license to be an organ donor, but was never really sure of the specifics. Let me know!

Sincerely,

Pam In CT

[Guest guest]

> Barbara, Hello it's Patty. It has been a long tome how are you

doing!!!

Hi Patty,

I'm so sorry to learn about your stroke!!! I had no idea. Going to

the hospital every month for a procedure has to be a major drag.

Just curious, would a new liver help, is it a consideration? Your

description of it as an 'ordeal' is an understatement to say the

least. I can only imagine what your hubby is going through. The

family is totally helpless. All they can do is worry and wonder.

I've always thought they have it worse than we do.

Things have been pretty exciting for me. I was informed by the head

of our OPO that my donor family would like to hear from me to know

how I'm doing. At the time of my transplant 6 1/2 years ago, I was

told they wanted absolutely no contact. I should have written a

letter for the OPO to keep in their file, regardless, but I didn't.

I wrote my letter Friday and the OPO mailed last Monday. I wouldn't

mind if they write back to me, we'll have to wait and see. Of

course, no names or location are given. It made me feel so good to

know they were interested in me. I'll keep you posted on the

continuing saga.

Germany - Sounds like a great trip, will you be gone long? I haven't

made it Germany yet. I could almost be a little jealous, especially

when I think about the food! )

I don't know if you've traveled to other countries since your

transplant? I've been going to Great Britain every year since my

transplant. The first trip,I was apprehensive about being so far

away.

I was concerned about finding myself in need of medical care in a

foreign country. I didn't want to spend even one moment worrying so

I made a " Just In Case " plan. I bring a letter from my doctor with a

brief description of my situation, as well as phone numbers for my

transplant team. I make a note of the names and location of centers

which perform liver transplants. I wouldn't go anywhere else.

Anyhoo, every single trip has been uneventful. I'm probably preaching

to the choir but thought I'd mention it anyway.

It would be great to know how Genny and Jodi are doing, but don't

knock yourself out. It makes me think about the time right after my

own transplant. I was going back and forth to the bathroom by myself

just 18 hours after the surgery. For the rest of the time,I wanted

lay around in bed listen to music, watch TV, and EAT. But, NO!!!!!!

First they wake you up during the night, then your room is full of

people all day long. I had get up and walk all around the hospital

from day one, take showers, etc. I was exhausted. As I learned much

later, don't expect to get any rest in a hospital.....

Sorry to go on and on, I've missed you.

My thoughts and prayers are with you,

Barbara Ann

AIH TX 12/94

BE AN ORGAN DONOR - OVER 76,000 WAITING!

[Guest guest]

Barbara, What meds do they have you on since your

transplant? Are there a lot of follow-up procedures?

How often do you see your hepatologists? I know I'm

asking a lot of questions but one day I may need a

liver transplant and I have so many questions. I feel

like you and the other post transplant pts. are the

ones that know all about it. I was one of the people

asking about ammonia levels because mine is elevated

and I was started on lactulose, but I know I did not

get an arterial blood drawn so now I'm wondering about

the accuracy of it. I will be asking my Dr. though. I

am so ahppy for all of you that are doing so great. It

gives anyone that is facing this a much needed

comfort. Congradulations on your anniversary!!!!

Judy Pensacola,Fl.

--- barbara99ann@... wrote:

>

> <<I, also, have occasion to celebrate. Tomorrow,

> May 21, is the 6th

> anniversary of my liver transplant at UPMC. I am

> just so thankful to

> be alive!!

> Bonnie P.>>

>

> HAPPY ANNIVERSARY TOOOO YUUUU!

> HAPPY ANNIVERSARY TOOOO YUUUU!

> HAPPY ANNIVERSARY DEAR BONNIE!

> HAPPY ANNIVERSARY T0000 YUUUU!

>

> AND MANY, MANY MORE!!!

>

> Barbara Ann

> AIH TX 12/94

> BE AN ORGAN DONOR - OVER 76,000 WAITING!

> LIVER - 17,500 WAITING!

>

>

__________________________________________________

[Guest guest]

Hi Barbara,It's sooo great to receive your post!!!It's like fresh water that makes me get energy to deal with the pain!!I'm a little poetic, I hope you don't mind...It's still hard to deal with this kind of pain, but still fighting againstit of course.So Barbara, I hope you're doing well today....Have a WONDERFUL week, this week...HUGS,Xiomi

[Guest guest]

ok i understand all to will.

[Guest guest]

Thanks Barbara...I will be writing later tonight...I'm hurting real bad right now...judy

-----Original Message-----From: ohbodiddle@... [mailto:ohbodiddle@...]Sent: Monday, December 31, 2001 2:23 PMHepatitis C Subject: Re: New personjudy please feel free to e-mail me at redrosepetal@.... i'll chat with you anytime you need to talk. i was a nurses aide. before the illness hit me. now i'm home and taking it one second at a time. and i've found a new outlet of writing poems. strange how things have worked out so far. please hang in there. a follow friend with hep c. my name is barbara. hope to hear from you.

[Guest guest]

<<<<< How horrible that the kids injected themselves. Any adverse effects

from this? >>

you get kind of a panic attack, iwth heart palpitations and stuff like that.

it is not lethal, but it shouldn't happne either .

<<You are forever on my mind and in my prayers! Barbara >

thanks!

Purim is a Jewish holiday in which the kids all wear costumes and have lots

of fun, to explain shortly and relevantly...... ;-)

[Guest guest]

Barbara

That's terrible. I am so sorry to hear about your loss. I am sure your

friend is devastated.

Sending good thoughts and prayers your way.

Dawn

had to attend funeral services for a fourteen y/o who killed himself last night.

This is the grandson of a very close friend. My children also went to Sunday

school and did Tae Kwon Do with this child. Very Sad. Barbara

[Guest guest]

In a message dated 9/12/2003 9:09:21 PM Pacific Daylight Time,

ptforme2002@... writes:

> Thank you for responding to my note. Me being so new and not posting

> because I am not sure what to say. I have many questions of my own about the

> surgery. Do you go to the support group meetings in Delano? If so I will be

at

> the one in October and maybe we could meet each other.

>

> Barbara Mock

Hi Barbara!

I'm sorry I am not able to attend the support group in Delano. I only

attended once, shortly after my surgery. I live in northern California, so it

is

quite a trek for me. I do plan to go to Delano close to my one year appointment

(that is if I can get an appointment compatible with my schedule) which will

be in November. I would like to get together with some post-and/or pre-ops

then. I will post when it is closer (and I am able to get an appointment)! LOL

Feel free to ask any and all questions about your surgery and what you can

look forward to -- that's exactly why we are here together! Someone usually

responds quickly (well, less so recently, as everyone is so busy living their

new

lives)! But you really can expect to receive answers and support for your

questions.

You are always welcome to email me privately, as well!

Hugs and blessings, Ann

[Guest guest]

In a message dated 9/12/2003 9:09:21 PM Pacific Daylight Time,

ptforme2002@... writes:

> Thank you for responding to my note. Me being so new and not posting

> because I am not sure what to say. I have many questions of my own about the

> surgery. Do you go to the support group meetings in Delano? If so I will be

at

> the one in October and maybe we could meet each other.

>

> Barbara Mock

Hi Barbara!

I'm sorry I am not able to attend the support group in Delano. I only

attended once, shortly after my surgery. I live in northern California, so it

is

quite a trek for me. I do plan to go to Delano close to my one year appointment

(that is if I can get an appointment compatible with my schedule) which will

be in November. I would like to get together with some post-and/or pre-ops

then. I will post when it is closer (and I am able to get an appointment)! LOL

Feel free to ask any and all questions about your surgery and what you can

look forward to -- that's exactly why we are here together! Someone usually

responds quickly (well, less so recently, as everyone is so busy living their

new

lives)! But you really can expect to receive answers and support for your

questions.

You are always welcome to email me privately, as well!

Hugs and blessings, Ann

[Guest guest]

> Barbara...your doing great posting...just like an old pro. There's

> no time like the present to start asking question...so ask

> away....no question is considered dumb or embarrassing.

>

> Welcome to the beginning of an amazing journey.

>

> JO

~~~~~~~~~~~~~~~~~~~~~~

I agree with Jo.....Am I remembering right? Don't you live in

Visalia? Thats just a few minutes from me...We should carpool to the

meetings lol Of course at the moment my car is ill..And I'm afraid it

may be terminal...lol (why do cars brake down right after you fill up

the gas tank..and just got new tires..)anyway I.m real close barbara

if you ever need to chat or want to meet for lunch or something...

in Woodlake

[Guest guest]

> stitch your stomach or use staples after removing the portion they

> take?

Hi Barbara!

If you are talking about the actual stomach closing, the " gun " that cuts also

staples at the same time (this is on the organ itself). I hope this helps!

Hugs and blessings, Ann