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I am new to this group as of today. It is my son-in-law Steve that has

PSC. He was diagnosed at the age of 17 and he is now 33. His desease

has progressed to the point of needing a transplant thought, and he is

very depressed about this. I was wondering if there is anyone out

there with any success stories concerning a transplant with PSC. He is

a wonderful young man, and he and my daughter Susie have two beautiful

children, Dylan 8 and 6. I was hoping to show him that there

are successful stories out there, that he could go through this, and be

healthy and happy again some day. Could any one help me?

Polly

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Has

your SIL Steve, ever heard of Klug?

Here is a link to his

page on his liver transplant. http://www.chrisklug.com/transplant.html

8 weeks after his transplant he was

back on the slopes snow boarding! I

won’t share any more of Chris’s story with you, it’s a whole

lot more fun thinking about what you’ll be saying after reading it –

things like WOW and WOOOOWWW!!!

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

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

_,___

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Polly,

I DON'T have a liver transplant, but know several people who have received liver transplants. I met them through the American Liver Foundation support group which meets about every 2 weeks in Reseda, CA. There are ALF support groups all over the country, so you might want to check their web site at http://www.liverfoundation.org/

Anyway, there are 3 people who show up regularly who have liver transplants and are doing very very well, and living full lives. It is one of the main reasons I go to the meetings when I can - because it is very hopeful to hear them speak, even though the thought of going through a liver transplant seems scary. Interestingly, everyone I've talked to who has a new liver considers themselves very lucky. It's usually one of the first things they say. I guess because it's hard to get a new liver.

-Marie

I am new to this group as of today. It is my son-in-law Steve that has PSC. He was diagnosed at the age of 17 and he is now 33. His desease has progressed to the point of needing a transplant thought, and he is very depressed about this. I was wondering if there is anyone out there with any success stories concerning a transplant with PSC. He is a wonderful young man, and he and my daughter Susie have two beautiful children, Dylan 8 and 6. I was hoping to show him that there are successful stories out there, that he could go through this, and be healthy and happy again some day. Could any one help me?Polly

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PollyOur son was very ill with his PSC from 11-19. 2 years ago he got his transplant and now is in college with As and feeling great. Tell Steve that this sucks without question but he can leave a pretty normal life with treatment.Martipollytorruiso wrote: I am new to this group as of today. It is my son-in-law Steve that has PSC. He was diagnosed at the age of 17 and he is now 33. His desease has progressed to the point of needing a transplant thought, and he is very depressed

about this. I was wondering if there is anyone out there with any success stories concerning a transplant with PSC. He is a wonderful young man, and he and my daughter Susie have two beautiful children, Dylan 8 and 6. I was hoping to show him that there are successful stories out there, that he could go through this, and be healthy and happy again some day. Could any one help me? Polly

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Dear Steve,

At the age of 22 my husband Darryll was diagoned with PSC and became

very symptomatic at the age of 32. Two and a half months ago he

recieved his liver transplant. By no means is he at 100% but each day

he gets stronger. It is too soon to ask him if he would do it again,

but if you asked me the answer would be yes. His doctors are very

pleased with the results of his transplant and I would recomend the

team at Starzel Transplant Clinic to anyone. They believe in

transplanting PSC as soon as they can. SO if you have the option of

going to UPMC Starzel Clinic GO!

Good luck and know there is hope.

Litsa

>

> I am new to this group as of today. It is my son-in-law Steve that

has

> PSC. He was diagnosed at the age of 17 and he is now 33. His

desease

> has progressed to the point of needing a transplant thought, and he

is

> very depressed about this. I was wondering if there is anyone out

> there with any success stories concerning a transplant with PSC.

He is

> a wonderful young man, and he and my daughter Susie have two

beautiful

> children, Dylan 8 and 6. I was hoping to show him that

there

> are successful stories out there, that he could go through this,

and be

> healthy and happy again some day. Could any one help me?

>

> Polly

>

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Polly, Tell Steve I feel his pain, but he has no choice. He must be positive and stay strong. His young family is depending on him. I was in the same situation as Steve. I lived with PSC for 11 years until April 2006. I was TX'ed and haven't looked back. I go to work everyday and can do what ever I want. I'm still building my strength back up. But there is no need to be depressed, It doesn't do any good. It may be tough on everyone for a while but its temporary!! Is he listed already. Where does he live? I had to move out of state for my TX.I waited almost 3yrs. in CA. before I got smart(actually my wife) and moved. Now im back in CA. and LIFE IS GOOD. If he needs someone to talk to I'm here for him. Mike PSC '95, TX, 06pollytorruiso wrote: I am new to

this group as of today. It is my son-in-law Steve that has PSC. He was diagnosed at the age of 17 and he is now 33. His desease has progressed to the point of needing a transplant thought, and he is very depressed about this. I was wondering if there is anyone out there with any success stories concerning a transplant with PSC. He is a wonderful young man, and he and my daughter Susie have two beautiful children, Dylan 8 and 6. I was hoping to show him that there are successful stories out there, that he could go through this, and be healthy and happy again some day. Could any one help me?Polly

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Polly,

In 1997 I had my first liver transplant. I was back to work in two

months. I was living a normal life until the PSC came back. I was

sick again for a couple of years until my second transplant in 2004.

I was out of the hospital one week after my transplant and back to

work full time in 3 months. I'm doing great and never regretted

getting either tranpslant. My doctors say I did so well because I

had a positive attitude, which I do. My sons were 6 and 3 when I had

my first transplant and they handled it just fine. Tell him to stay

positive. Good luck and I hope all goes well for him.

PSC 1988, TX1 1997, TX2 2004

>

I was wondering if there is anyone out

> there with any success stories concerning a transplant with PSC. >

Polly

>

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Polly, what a wonderful Mother in Law you are. You

can tell him that there are many success stories on

this site, and alot of patients, caregivers and other

family members who deal with this in their lives

daily...some of the struggles are a challenge...but

learning about PSC and hearing about others going

through the same situations seems to make you feel

less 'alone' and able to develop coping skills.

If he won't come on this site, you certainly can get

information and relay it to him.

Hugs to you...I sure wish my MIL had such kindness.

Cindy Baudoux-Northrup

________________________________________________________________________________\

____

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Polly,

I'm and 23 and I was blessed with at liver the 5th of Feb. I was

also diagnosed with PSC when I was 17 so I know Steve felt. It takes

that invincible feeling away from you that all high school kids have

away really fast. You asked your self why this happened when you did

nothing to spark it. You lose a part of your life it seems. I was

very down for a long time but then I realized that there is nothing

you can do about it and worrying was just going to make you worse.

It has been one month and nine days since I have received my new

liver. I have so much energy and I feel like a million bucks. I

feel like a 23yr old should. I was only in the hospital for 7 days

and all the pain from my surgery only lasted about two weeks. You

feel so much better the next day after you get it. Even though you

are in pain you kind of forget about it b/c you are feeling so good.

Now that I'm home and have nothing to do I think a lot about why

this happened to me. I would not change this because now I have

such a greater look on life. I really do live everyday as if it were

my last. After your transplant the grass seems greener, the sky

seems bigger and bluer. U really enjoy life so much more. I know me

writing this is not going to change things. I read a lot before I

had mine and it really did nothing for me. You have to experience

it for yourself to truly realize how great it is. Tell Steve to

hang in there because it is so worth it in the long run. Steve will

be in my prayers.

Ty

I am new to this group as of today. It is my son-in-law Steve

that has PSC. He was diagnosed at the age of 17 and he is now 33.

His desease has progressed to the point of needing a transplant

thought, and he is very depressed about this. I was wondering if

there is anyone out there with any success stories concerning a

transplant with PSC. He is a wonderful young man, and he and my

daughter Susie have two beautiful children, Dylan 8 and 6. I

was hoping to show him that there are successful stories out there,

that he could go through this, and be healthy and happy again some

day. Could any one help me?

Polly

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Here

are some famous people who have had liver transplants. Please note, some have retired, (because

of age) while others are still working!

Fabares 1944 - (Retired)

Actress " Coach " , Elvis movies

Liver transplant

Larry Hagmann 1931- (Still working)

Actor " I Dream of Genie " , " Dallas "

Liver transplant 1995

(Side note, from his web site: As one

who has personally been touched by the gift of life, I encourage you to work

with me to drive home the message that organ donation works and every American

should consider it. Last year, 11,684 Americans and

their families donated organs. This resulted in 20,593

life-saving transplants. Although these numbers are

promising, it is still not enough for the thousands more critically ill

individuals who could have been helped if more organs were available. There are now more than 82,000 people on the national

organ transplantation waiting list. Everyday, 16

people die waiting for an organ transplant to give them a second chance at life.

It is so important to get the word out … transplantation saves

lives. Experts suggest that each of us could save or

help as many as 50 people by being an organ donor. We recycle everything these days …

paper, cardboard, glass, plastic, tires …. why

not recycle ourselves? Please help by signing your donor card. Thank you for your efforts. Larry Hagman. (Larry also serves on the Board of Directors Advisory Committee of

Transplantation for the US. Dept. of Health and Human Services).

Evel Knievel 1938- (He retired in 1981; in 1998 he

announced that he needed a liver transplant)

Motorcycle Daredevil

Liver transplant

(Side note: Knievel had

a liver transplant in 1999. Evel has been an avid

golfer most of his life and continues to play regularly. He

enjoys all sports and likes to watch and wager on football, basketball

and hockey games. He has been a

generous contributor to charities and currently is promoting the work of the

" Make a Wish Foundation, " an organization that arranges the

fulfillment of the dreams of children suffering from terminal illnesses.)

Jim Nabors 1933- (Still working)

Singer/Actor " Andy Griffith Show "

Liver transplant

(Side note: Since

his very successful liver transplant surgery in 1994, Jim has been back on the

personal appearance circuit and has had engagements with several symphonies

including the Dallas and St. Louis Symphonies. When he is not performing, one can find

Jim at his home in Honolulu or on a

tractor in Hana, Maui, on his

macadamia nut farm where he also grows tropical flowers.)

() Redford 1963- (Still working)

(Son of Redford)

Liver transplant

Producer of the movie about liver transplantation " The Kindness of

Strangers "

Broadcast on HBO

Pat Summerall (Still

working)

TV sportscaster

- having worked at CBS,

FOX,

and ESPN.

Liver Transplant

(Side note: Summerall had

his liver transplant in 2004 at the age of 74! He is

currently back working for ESPN.)

There are many more

famous people who have had liver transplants, they have returned to work and

play and lead fulfilling lives. Tell

your SIL, getting a liver transplant isn’t going to be a very good excuse,

he’ll still have to help your daughter with the laundry, grocery shopping

and taking out the garbage! HTH

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

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

,___

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Ty,

You are one amazingly mature and positive young man! Congratulations on

your successful transplant and thanks for sharing your wonderful life

philosophy with all of us. May your recovery continue to be smooth.

Ricky

PSC 2003

Re: Successful transplants

> Polly,

> I'm and 23 and I was blessed with at liver the 5th of Feb. >

> Ty

>

>

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Polly, I am sorry to hear that your son-in-law is getting worst and will be needing a transplant soon. Unfortunately this is the way this disease progresses. I was diagnosed with PSC in 2000. It was hard on me thinking that I was going to need a transplant at some point with my children still being so young (my daughter was 6 yrs. old and my son was only 6 mons. old when I was diagnosed). Unlike you I hadn't found this web site but I did find out about a book called "To the Edge and Back" by Klug that really made me feel better about the whole thing. Chis got a liver transplant in 2000 and in 2002 went on to win the bronze medal in the Olympics for snowbording. As for me I had my transplant on Sept. 28th 2005 and I'm doing great. All my symptoms went away so quickly after the surgery and I was able to be there for my kids again. That was the best part. Pat (CA) pollytorruiso wrote: I am new to this group as of today. It is my son-in-law Steve that has PSC. He was diagnosed at the age of 17 and he is now 33. His desease has progressed to the point of needing a transplant thought, and he is very depressed about this. I was wondering if there is anyone out there with any success stories concerning a transplant with PSC. He is a wonderful young man, and he and my daughter Susie have

two beautiful children, Dylan 8 and 6. I was hoping to show him that there are successful stories out there, that he could go through this, and be healthy and happy again some day. Could any one help me?Polly

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Polly, I am sorry to hear that your son-in-law is getting worst and will be needing a transplant soon. Unfortunately this is the way this disease progresses. I was diagnosed with PSC in 2000. It was hard on me thinking that I was going to need a transplant at some point with my children still being so young (my daughter was 6 yrs. old and my son was only 6 mons. old when I was diagnosed). Unlike you I hadn't found this web site but I did find out about a book called "To the Edge and Back" by Klug that really made me feel better about the whole thing. Chis got a liver transplant in 2000 and in 2002 went on to win the bronze medal in the Olympics for snowbording. As for me I had my transplant on Sept. 28th 2005 and I'm doing great. All my symptoms went away so quickly after the surgery and I was able to be there for my kids again. That was the best part. Pat (CA) pollytorruiso wrote: I am new to this group as of today. It is my son-in-law Steve that has PSC. He was diagnosed at the age of 17 and he is now 33. His desease has progressed to the point of needing a transplant thought, and he is very depressed about this. I was wondering if there is anyone out there with any success stories concerning a transplant with PSC. He is a wonderful young man, and he and my daughter Susie have

two beautiful children, Dylan 8 and 6. I was hoping to show him that there are successful stories out there, that he could go through this, and be healthy and happy again some day. Could any one help me?Polly

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