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Nightline and PSC

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Hi Clint,

Thank you for the link. I watched it because my son has PSC but it was

a surprise to see the second story, about a man with Lou Gehrig's

disease / ALS (not sure about the spelling). My father had that... and

it brought back memories. And there was another ALS story in the recent

Nightline stories. Although PSC is a battle, it is better than ALS.

Thanks,

Taru-Mari, mother of Eemeli (10), PSC July 2003

>

> http://abcnews.go.com/Video/playerIndex?id=3614279

> this is the video on nightline if anyone would care to watch it

>

> clint

> UC 1979 psc2006

>

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I missed the show on ABC... does anyone know if it's available? I was able to see the first 8 minutes but have not been able to find it.

Thanks.

Arman

arman_shirin@...

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Thanks to all who have replied that they will be willing to speak to a

potential donor. I have a feeling a few people may be lucky enough to take

advantage of this.

>

>Reply-To:

>To:

>Subject: Re: Re: Nightline and PSC

>Date: Sun, 23 Sep 2007 06:55:00 -0700 (PDT)

>

>I would be willing as well.

>Marti

>

> wrote: I was a

>live donor for my husband on 10/16/07. I would be more than

> happy to talk to others who are considering this.

>

> Marie Nilsson wrote:

>

> >,

> >

> >Would your donor be willing to talk to other potential donors?

> >

> >

> >

>

>

>

>

>

>

>---------------------------------

>Looking for a deal? Find great prices on flights and hotels with Yahoo!

>FareChase.

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I will be asking Carlo. He went away for the weekend. I should be

talking to him this week.

Dziemian in Worcester,MA PSC 92, UC 93, TX 07

>

> >,

> >

> >Would your donor be willing to talk to other potential donors?

> >

> >

> >

>

>

>

>

>

>

> ---------------------------------

> Looking for a deal? Find great prices on flights and hotels with

Yahoo! FareChase.

>

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;

I think this date is wrong. Oct 16th 2007 hasn't occurred yet.

I was a live donor for my husband on 10/16/07. I would be more than happy to talk to others who are considering this.Marie Nilsson wrote:>,>>Would your donor be willing to talk to other potential donors? >> > -- Ian Cribb P.Eng.

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Thanks for posting, I did watch and I would give part of my liver to my son in a heartbeat.I worry that the time will come and that I will be too old to do so. I'm 54 now and my son is 24.I really hope his disease is very slow giving us time to find better treatment.Leearmanthis link should allow you to watch the programhttp://abcnews.go.com/Video/playerIndex?id=3617088 clint

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I noted in the Nightline presentation that they refer to the "serious

risk" involved in donating part of your liver. I'm not looking for

exacts, but does someone have answers to whether the risk is serious

(i.e., could result in fatality) or whether it's "high risk"

(i.e., significant chance of fatality)? I know that there are donors

who have died as a result of their gift giving, but it seems to me that

it's not that common or we would hear more about it? I'm not referring

juts to giving part of your liver but also donating a kidney (and any

other donatable organs while a person is still living - and intends to

go on living). I'm asking because when I heard them refer to the

"serious risk" involved, I thought to myself, yes, it is possible that

one could die from complications, but is it a very high risk? It might

be nice to offset the claim of "serious risk" with a percent showing

that the likelihood is not that great. Then again, maybe I don't fully

understand the risk.

And thanks for sending the link, Clint. I wasn't able to catch it on

tv and was pleased to be able to view it online.

relaytech1960 wrote:

arman

this link should allow you to watch the program

http://abcnews.go.com/Video/playerIndex?id=3617088 clint

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your right--10/16/2006 was the day, almost a year which is so hard to

believe.

Ian Cribb wrote:

> ;

>

> I think this date is wrong. Oct 16th 2007 hasn't occurred yet.

>

>

> On 9/22/07, ** <lmaclean@...

> > wrote:

>

> I was a live donor for my husband on 10/16/07. I would be more than

> happy to talk to others who are considering this.

>

> Marie Nilsson wrote:

>

>>,

>>

>>Would your donor be willing to talk to other potential donors?

>>

>>

>>

>

>

>

>

> --

> Ian Cribb P.Eng.

>

>

>

> __________ NOD32 2547 (20070924) Information __________

>

> This message was checked by NOD32 antivirus system.

> http://www.eset.com

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The Dr.s at Lahey said that the opertive mortaility rate was about

a half a percent. Like any major surgery there are risks, but that

is why they access the donor so throughly. The donor is reviewed by a

seperate team of Dr.s. That way there isn't a conflict of intrest.

Any issue at all they deny the prospective donor. I didn't meet Dr.

Pomfret (the donor's surgeon) until after the surgery.

I think the " serious risk " was a little bit of dramatic TV. Thruout

the wole process I never heard the term " serious risk " .

D

> > arman

> > this link should allow you to watch the program

> > http://abcnews.go.com/Video/playerIndex?id=3617088

> > clint

> >

> >

> >

> >

>

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Living Donor death aprox .15 to .2% i.e. 1.5 to 2 deaths/1000

The most comprehensive article I've seen is below. It was sobering to

read the cause of death of each of the 13 donors identified in the

article.

Documented deaths of hepatic lobe donors for living donor liver

transplantation.

Liver Transpl. 2006; 12(10):1485-8 (ISSN: 1527-6465)

below is a copy of the first part of the article.

Trotter JF; Adam R; Lo CM; Kenison J

University of Colorado Health Sciences Center, Denver, CO 80262, USA.

james.trotter@...

The actual risk of death in hepatic lobe donors for living donor

liver transplantation (LDLT) is unknown because of the lack of a

comprehensive database. In the absence of a definitive estimate of

the risk of donor death, the medical literature has become replete

with anecdotal reports of donor deaths, many of which cannot be

substantiated. Because donor death is one of the most important

outcomes of LDLT, we performed a comprehensive survey of the medical

and lay literature to provide a referenced source of worldwide donor

deaths. We reviewed all published articles from the medical

literature on LDLT and searched the lay literature for donor deaths

from 1989 to February 2006. We classified each death

as " definitely, " " possibly, " or " unlikely " related to donor surgery.

We identified 19 donor deaths (and one additional donor in a chronic

vegetative state). Thirteen deaths and the vegetative donor

were " definitely, " 2 were " possibly, " and 4 were " unlikely " related

to donor surgery. The estimated rate of donor death " definitely "

related to donor surgery is 0.15%. The rate of donor death which

is " definitely " or " possibly " related to the donor surgery is 0.20%.

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Is there more to this article than what you posted here? I'd love to

know more about the 13 deaths definitely related to the LDLT - were

things overlooked or missed in the pre-tx eval? Did something go

wrong? Was post op infection the culprit?

You, Barb and Dave never cease to amaze me with your ability to find

info and articles moments after someone requests info! You give our

group interactive resourcing power that's hard to find elsewhere. It's

so cool!

jumputah wrote:

> Living Donor death aprox .15 to .2% i.e. 1.5 to 2 deaths/1000

>

>

> The most comprehensive article I've seen is below. It was sobering to

> read the cause of death of each of the 13 donors identified in the

> article.

> Documented deaths of hepatic lobe donors for living donor liver

> transplantation.

> Liver Transpl. 2006; 12(10):1485-8 (ISSN: 1527-6465)

> below is a copy of the first part of the article.

>

> Trotter JF; Adam R; Lo CM; Kenison J

> University of Colorado Health Sciences Center, Denver, CO 80262, USA.

> james.trotter@...

>

> The actual risk of death in hepatic lobe donors for living donor

> liver transplantation (LDLT) is unknown because of the lack of a

> comprehensive database. In the absence of a definitive estimate of

> the risk of donor death, the medical literature has become replete

> with anecdotal reports of donor deaths, many of which cannot be

> substantiated. Because donor death is one of the most important

> outcomes of LDLT, we performed a comprehensive survey of the medical

> and lay literature to provide a referenced source of worldwide donor

> deaths. We reviewed all published articles from the medical

> literature on LDLT and searched the lay literature for donor deaths

> from 1989 to February 2006. We classified each death

> as " definitely, " " possibly, " or " unlikely " related to donor surgery.

> We identified 19 donor deaths (and one additional donor in a chronic

> vegetative state). Thirteen deaths and the vegetative donor

> were " definitely, " 2 were " possibly, " and 4 were " unlikely " related

> to donor surgery. The estimated rate of donor death " definitely "

> related to donor surgery is 0.15%. The rate of donor death which

> is " definitely " or " possibly " related to the donor surgery is 0.20%.

>

>

>

>

>

>

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ABC's website is screwy!! I tried to find the whole thing but to no

avail... i'll keep looking

> thanks, but this link only gives about the first 8 minutes. Is the

rest

> available?

>

> Ian (51) PSC 89

>

>

>

> >

> > arman

> > this link should allow you to watch the program

> > http://abcnews.go.com/Video/playerIndex?id=3617088

> > clint

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

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