Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 http://abcnews.go.com/Video/playerIndex?id=3617088 I don't know why but I think this link is more accurate. If you had problems try this one. If that doesn't work just scroll down thru the videos on nightline's website. thanks clint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 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@... Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 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. _________________________________________________________________ It’s the Windows Live™ Hotmail® you love — on your phone! http://www.microsoft.com/windowsmobile/mobilehotmail/default.mspx?WT.mc_ID=Mobil\ eHMTagline2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 ; 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 arman this link should allow you to watch the program http://abcnews.go.com/Video/playerIndex?id=3617088 clint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 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 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 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%. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 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%. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 clint, thanks, but this link only gives about the first 8 minutes. Is the rest available? Ian (51) PSC 89 armanthis link should allow you to watch the programhttp://abcnews.go.com/Video/playerIndex?id=3617088 clint -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 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. > > Quote Link to comment Share on other sites More sharing options...
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