RE: Barb

[Guest guest]

HI Barb,

When I first joined the list 10 years ago, I found it so

depressing, so I went no mail for many years. Last year, as I was being

re-evaluated, and listed for transplant, I went back on, and one of the first things

I heard about was Ken and Jonathon’s transplants. There was so much hope

and faith and support, and your strength shone through in the fight for Ken’s

survival.

I can well understand the feeling of dread you feel, I’m

still not sure I want to be on that dreaded list, although I know it is my only

hope seeing my kids graduate, get married etc etc etc. All I can say is that

things will work out as they will, and we all admire what you have done for

both Ken, and for all of us.

My hat goes off to you,

Penny T (Australia)

Ps I just been “delisted” for 6 weeks whilst I have

another tooth removed…..everyone be careful, Questran has killed my

teeth. It is supposed to be lining my insides, but it was sticking to my gums

and teeth and wrecked them. Hopefully now I know I can stop the rot, and go

back onto the active list ASAP

He wants to go ahead and get the next transplant as soon as he

can, to get on with his life. I want him to wait as long as

possible. I have such an overbearing feeling of doom, I don’t know

what to do with it. I haven’t vocalize that to anyone except

TJ. So much has gone wrong and makes the next transplant sound so very

complicated and dangerous. I wonder too, how many livers they will give

him before saying enough.

Sorry I dropped all this on you, maybe that’s why your Life

is good even when it is not stuck such a cord in me.

[Guest guest]

Barb,

My thoughts echo those that Penny has written so

beautifully. I too admire everything that you continue to do for Ken and

for all of us. My heart goes out to Ken and you. Please know that you

have hundreds of us online thinking positive thoughts and sending them your

way. Wishing you the best.

Ricky

From:

[mailto: ] On Behalf

Of Penny

Sent: Sunday, February 10, 2008 11:24 PM

To:

Subject: RE: Barb

HI Barb,

I can well understand the feeling of dread you feel, I’m

still not sure I want to be on that dreaded list, although I know it is my only

hope seeing my kids graduate, get married etc etc etc. All I can say is that

things will work out as they will, and we all admire what you have done for

both Ken, and for all of us.

My hat goes off to you,

Penny T (Australia)

[Guest guest]

-----Original

Message-----

I can well understand the feeling of dread you feel, I’m

still not sure I want to be on that dreaded list,

I sure hope I haven’t

scared anyone, I sure didn’t mean to. I was just feeling down that day and my

fingers got the best of me and out it spilled.

I want to be perfectly

clear – Ken’s transplant was a total success, his new liver loves it’s

new home. The things that happened

to Ken really are rare. Even

now with all the stuff going on in his body, his liver is still happy. So please don’t worry, get listed -

if and when it’s time, have surgery and go on with your life. That’s what Ken is going to do ASAP.

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

[Guest guest]

Barb-

I echo everyone's sentiments hear re: you and Ken. What total fortitude,

determination, perseverance and yes - stubbornness - you exhibit -

(stubbornness is needful) to FIGHT with every ounce of your being to do

" whatever it takes. " And I'd be feeling fearful too, if I were you.

Anyone would under the circumstances.But I'm confused - if the liver is

happy, did things totally unrelated to the liver cause all of these

issues? Forgive me if I'm being a dunce and you've already covered this.

[Guest guest]

Barb, Do not worry about your honest feelings. What good is a

support group if we are not able to support our fellow members during

their good and the bad times. We cannot just sugar coat things,

because that is what we think everyone want to hear. This disease is

bittersweet, full of ups and downs. You and your family are in our

thoughts and prayers.

PSC 5/07 Listed

>

> -----Original Message-----

> I can well understand the feeling of dread you feel, I'm still not

sure

> I want to be on that dreaded list,

> I sure hope I haven't scared anyone, I sure didn't mean to. I was

just

> feeling down that day and my fingers got the best of me and out it

> spilled.

>

> I want to be perfectly clear - Ken's transplant was a total

success, his

> new liver loves it's new home. The things that happened to Ken

really

> are rare. Even now with all the stuff going on in his body, his

liver

> is still happy. So please don't worry, get listed - if and when

it's

> time, have surgery and go on with your life. That's what Ken is

going

> to do ASAP.

>

> Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>

[Guest guest]

Just to add to what others have already said and to send

prayers to Barb and especially Ken.

I was transplanted nearly 8 years ago, it saved my life, I

have no doubt about that, but wouldn’t rush in to be re-done if the need

arose.

It is major and very traumatic surgery, and if time gives

Ken a better chance then I hope this is what he gets, in order to be stronger.

Barb you are an inspiration to us all, well done, keep your

chin up!

Debbie Eady

AIH 1979, U.C 2005 and ?PSC.

England

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