Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? For Ken, Baylor (and many other hospitals) doesn’t do living donor transplants. No transplant hospital will do a transplant until the risk of dying with the disease is greater than the risk of dying from the surgery. Hence the MELD 15 rule. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? For Ken, Baylor (and many other hospitals) doesn’t do living donor transplants. No transplant hospital will do a transplant until the risk of dying with the disease is greater than the risk of dying from the surgery. Hence the MELD 15 rule. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? For Ken, Baylor (and many other hospitals) doesn’t do living donor transplants. No transplant hospital will do a transplant until the risk of dying with the disease is greater than the risk of dying from the surgery. Hence the MELD 15 rule. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? > ================================== One reason is that many are quite reluctant to ask someone else, particularly someone they care for deeply, to undergo the risks of such major surgery. All surgery carries risk, and this is super major big-time surgery. You're asking someone else to literally put their life on the line so you can (hopefully) keep your own life. That's a massive, almost crushing load to put on someone's heart (and shoulders!). How does the potential donor's spouse / children / siblings / parents feel about this? Would there be the strong safety net of family support or does it have a few holes here and there? Lots of folks don't have the support networks in place for health issues anyway, much less for something so involved as becoming a live organ donor. It's also extremely expensive to undergo all the batteries of tests (will your insurance pay? will their insurance pay? will you be willing to provide the cold hard cash for these expenses?) and many potential donors are ruled out as a result of these tests. There have been PSC patients in this group who have had multiple donors undergo testing before finding someone who could clear every hurdle. Another consideration is whether or not your potential donor can afford to take weeks away from work for testing, surgery & recovery. With massive unemployment right now in the USA, it could mean they lose their job altogether. How would they then support themselves and their family? There are just so many really tough questions which must be resolved, with the end result of total peace of mind for all the parties involved. Just my rambling thoughts. :-) Regards, Carolyn B. in SC (who -- for newcomers in the group who don't know -- has opted not to go for transplant at all due to numerous other medical issues, and has been at total peace for 8 years now with this decision) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? > ================================== One reason is that many are quite reluctant to ask someone else, particularly someone they care for deeply, to undergo the risks of such major surgery. All surgery carries risk, and this is super major big-time surgery. You're asking someone else to literally put their life on the line so you can (hopefully) keep your own life. That's a massive, almost crushing load to put on someone's heart (and shoulders!). How does the potential donor's spouse / children / siblings / parents feel about this? Would there be the strong safety net of family support or does it have a few holes here and there? Lots of folks don't have the support networks in place for health issues anyway, much less for something so involved as becoming a live organ donor. It's also extremely expensive to undergo all the batteries of tests (will your insurance pay? will their insurance pay? will you be willing to provide the cold hard cash for these expenses?) and many potential donors are ruled out as a result of these tests. There have been PSC patients in this group who have had multiple donors undergo testing before finding someone who could clear every hurdle. Another consideration is whether or not your potential donor can afford to take weeks away from work for testing, surgery & recovery. With massive unemployment right now in the USA, it could mean they lose their job altogether. How would they then support themselves and their family? There are just so many really tough questions which must be resolved, with the end result of total peace of mind for all the parties involved. Just my rambling thoughts. :-) Regards, Carolyn B. in SC (who -- for newcomers in the group who don't know -- has opted not to go for transplant at all due to numerous other medical issues, and has been at total peace for 8 years now with this decision) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? > ================================== One reason is that many are quite reluctant to ask someone else, particularly someone they care for deeply, to undergo the risks of such major surgery. All surgery carries risk, and this is super major big-time surgery. You're asking someone else to literally put their life on the line so you can (hopefully) keep your own life. That's a massive, almost crushing load to put on someone's heart (and shoulders!). How does the potential donor's spouse / children / siblings / parents feel about this? Would there be the strong safety net of family support or does it have a few holes here and there? Lots of folks don't have the support networks in place for health issues anyway, much less for something so involved as becoming a live organ donor. It's also extremely expensive to undergo all the batteries of tests (will your insurance pay? will their insurance pay? will you be willing to provide the cold hard cash for these expenses?) and many potential donors are ruled out as a result of these tests. There have been PSC patients in this group who have had multiple donors undergo testing before finding someone who could clear every hurdle. Another consideration is whether or not your potential donor can afford to take weeks away from work for testing, surgery & recovery. With massive unemployment right now in the USA, it could mean they lose their job altogether. How would they then support themselves and their family? There are just so many really tough questions which must be resolved, with the end result of total peace of mind for all the parties involved. Just my rambling thoughts. :-) Regards, Carolyn B. in SC (who -- for newcomers in the group who don't know -- has opted not to go for transplant at all due to numerous other medical issues, and has been at total peace for 8 years now with this decision) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 All good points. First of all, according to Baylor, the donor must be the same blood type, between the ages of 18 and 55, and still have their own gall bladder. THEN they must be able to take at least 2 months off to recover. I’d sure think twice before asking anyone to do that. Nita > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? > ================================== There are just so many really tough questions which must be resolved, with the end result of total peace of mind for all the parties involved. Just my rambling thoughts. :-) Regards, Carolyn B. in SC (who -- for newcomers in the group who don't know -- has opted not to go for transplant at all due to numerous other medical issues, and has been at Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 All good points. First of all, according to Baylor, the donor must be the same blood type, between the ages of 18 and 55, and still have their own gall bladder. THEN they must be able to take at least 2 months off to recover. I’d sure think twice before asking anyone to do that. Nita > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? > ================================== There are just so many really tough questions which must be resolved, with the end result of total peace of mind for all the parties involved. Just my rambling thoughts. :-) Regards, Carolyn B. in SC (who -- for newcomers in the group who don't know -- has opted not to go for transplant at all due to numerous other medical issues, and has been at Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? As Barb said, many transplant centers don’t do living donor transplants. Mine does do them and I was encouraged to find a donor. My sister-in-law volunteered, but was rejected due to age. They wanted to make sure that the donor was at very low risk; therefore, they only wanted donors 40 and under. Obviously it is more expensive to do a living donor transplant because you have two patients and two similar surgical charges. _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? As Barb said, many transplant centers don’t do living donor transplants. Mine does do them and I was encouraged to find a donor. My sister-in-law volunteered, but was rejected due to age. They wanted to make sure that the donor was at very low risk; therefore, they only wanted donors 40 and under. Obviously it is more expensive to do a living donor transplant because you have two patients and two similar surgical charges. _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- First of all, according to Baylor, the donor must be the same blood type Baylor has only done 4 living donor transplants since 2002. I think 3 were for children. I do know the one they did at Baylor Dallas passed away after surgery. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- First of all, according to Baylor, the donor must be the same blood type Baylor has only done 4 living donor transplants since 2002. I think 3 were for children. I do know the one they did at Baylor Dallas passed away after surgery. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -----Original Message----- First of all, according to Baylor, the donor must be the same blood type Baylor has only done 4 living donor transplants since 2002. I think 3 were for children. I do know the one they did at Baylor Dallas passed away after surgery. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Lori, My doctor used to say, (with his brusk humor) " It's not like giving a kidney or something. " The risk of complications for the donor is much higher than for say a kidney. I personally would not consider putting anyone of my family member's health at risk, nor would I want someone else to do it either. But, I also understand I shouldn't make such a decision alone. I might be willing to die rather than have someone donate a part of their liver, but my family might have very different feelings on that issue. All of my four older children have health issues which would preclude them from donating anyway. I've had some in laws offer if the need arises. I hope never to have to make that decision. Even people with kidney issues die waiting for transplants. I have a friend who's mother needed a kidney transplant. Her husband gave one of his kidneys to his mother-in-law. Even though he was in excellent health (you have to be for them to accept an organ), his health has been adversely affected by his sacrifice. My friend now has the same disease her mother had. She will need a new kidney in the future. She says she will not accept a live donor after seeing what her husband has gone through. It's a very complex decsion. Take care, Cheryl ID PSC/UC/RP/ undx kidney problem Live donor question > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? >  > Lori A. >  > " Aggressively Pursuing Solutions To Your Real Estate Needs! " >  > First Weber Group > Cell: > 1507 E. Sunset Drive > Waukesha, WI 53189 > LoriUSA@... > www.Lori.FirstWeber.com >  > Click here > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Lori, My doctor used to say, (with his brusk humor) " It's not like giving a kidney or something. " The risk of complications for the donor is much higher than for say a kidney. I personally would not consider putting anyone of my family member's health at risk, nor would I want someone else to do it either. But, I also understand I shouldn't make such a decision alone. I might be willing to die rather than have someone donate a part of their liver, but my family might have very different feelings on that issue. All of my four older children have health issues which would preclude them from donating anyway. I've had some in laws offer if the need arises. I hope never to have to make that decision. Even people with kidney issues die waiting for transplants. I have a friend who's mother needed a kidney transplant. Her husband gave one of his kidneys to his mother-in-law. Even though he was in excellent health (you have to be for them to accept an organ), his health has been adversely affected by his sacrifice. My friend now has the same disease her mother had. She will need a new kidney in the future. She says she will not accept a live donor after seeing what her husband has gone through. It's a very complex decsion. Take care, Cheryl ID PSC/UC/RP/ undx kidney problem Live donor question > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? >  > Lori A. >  > " Aggressively Pursuing Solutions To Your Real Estate Needs! " >  > First Weber Group > Cell: > 1507 E. Sunset Drive > Waukesha, WI 53189 > LoriUSA@... > www.Lori.FirstWeber.com >  > Click here > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Lori, My doctor used to say, (with his brusk humor) " It's not like giving a kidney or something. " The risk of complications for the donor is much higher than for say a kidney. I personally would not consider putting anyone of my family member's health at risk, nor would I want someone else to do it either. But, I also understand I shouldn't make such a decision alone. I might be willing to die rather than have someone donate a part of their liver, but my family might have very different feelings on that issue. All of my four older children have health issues which would preclude them from donating anyway. I've had some in laws offer if the need arises. I hope never to have to make that decision. Even people with kidney issues die waiting for transplants. I have a friend who's mother needed a kidney transplant. Her husband gave one of his kidneys to his mother-in-law. Even though he was in excellent health (you have to be for them to accept an organ), his health has been adversely affected by his sacrifice. My friend now has the same disease her mother had. She will need a new kidney in the future. She says she will not accept a live donor after seeing what her husband has gone through. It's a very complex decsion. Take care, Cheryl ID PSC/UC/RP/ undx kidney problem Live donor question > > Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? >  > Lori A. >  > " Aggressively Pursuing Solutions To Your Real Estate Needs! " >  > First Weber Group > Cell: > 1507 E. Sunset Drive > Waukesha, WI 53189 > LoriUSA@... > www.Lori.FirstWeber.com >  > Click here > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 That (matching blood type) is one of those things that seems to vary from site to site:Variations I've seen:Blood type - compatible donor (O can give to any ABO type) v. matching ABO type (O can only give to O)Relationship - must be a relative v. donor may not even have known recipient before donationAge - at least 18, but upper cutoff varies from 45 to 60 , Mom to 18 yo daughter UC 6/95, PSC 3/09From: Barb Henshaw To: Sent: Tuesday, April 7, 2009 7:23:08 PMSubject: RE: Re: Live donor question -----Original Message----- First of all, according to Baylor, the donor must be the same blood type Baylor has only done 4 living donor transplants since 2002. I think 3 were for children. I do know the one they did at Baylor Dallas passed away after surgery. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 That (matching blood type) is one of those things that seems to vary from site to site:Variations I've seen:Blood type - compatible donor (O can give to any ABO type) v. matching ABO type (O can only give to O)Relationship - must be a relative v. donor may not even have known recipient before donationAge - at least 18, but upper cutoff varies from 45 to 60 , Mom to 18 yo daughter UC 6/95, PSC 3/09From: Barb Henshaw To: Sent: Tuesday, April 7, 2009 7:23:08 PMSubject: RE: Re: Live donor question -----Original Message----- First of all, according to Baylor, the donor must be the same blood type Baylor has only done 4 living donor transplants since 2002. I think 3 were for children. I do know the one they did at Baylor Dallas passed away after surgery. Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 At the risk of repeating myself (like, that never happensJ), how would you feel in their shoes? If possible, I’d do it in a heartbeat for my wife (or other loved one). In their shoes, how would you feel if you were “rejected†for your gift? It’s really not your decision, although you can obviously choose not to. Is childbirth risk-free? You gave your children life – barring exclusions (such as you’ve mentioned), why would anyone prevent their offspring from reciprocating in the only way they can? If you could, would you do it for them? Sorry, I don’t think this is right (for me).  Arne (– and still hoping I can hold out until I can “grow my oneâ€) From: [mailto: ] On Behalf Of Logan Berg …I personally would not consider putting anyone of my family member's health at risk, nor would I want someone else to do it either… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 At the risk of repeating myself (like, that never happensJ), how would you feel in their shoes? If possible, I’d do it in a heartbeat for my wife (or other loved one). In their shoes, how would you feel if you were “rejected†for your gift? It’s really not your decision, although you can obviously choose not to. Is childbirth risk-free? You gave your children life – barring exclusions (such as you’ve mentioned), why would anyone prevent their offspring from reciprocating in the only way they can? If you could, would you do it for them? Sorry, I don’t think this is right (for me).  Arne (– and still hoping I can hold out until I can “grow my oneâ€) From: [mailto: ] On Behalf Of Logan Berg …I personally would not consider putting anyone of my family member's health at risk, nor would I want someone else to do it either… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 At the risk of repeating myself (like, that never happensJ), how would you feel in their shoes? If possible, I’d do it in a heartbeat for my wife (or other loved one). In their shoes, how would you feel if you were “rejected†for your gift? It’s really not your decision, although you can obviously choose not to. Is childbirth risk-free? You gave your children life – barring exclusions (such as you’ve mentioned), why would anyone prevent their offspring from reciprocating in the only way they can? If you could, would you do it for them? Sorry, I don’t think this is right (for me).  Arne (– and still hoping I can hold out until I can “grow my oneâ€) From: [mailto: ] On Behalf Of Logan Berg …I personally would not consider putting anyone of my family member's health at risk, nor would I want someone else to do it either… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 My husband is not a candidate for living donor tx because he has had Pancreatic surgery. In fact, they had to adjust the pancreas surgery so he could get a tx at all. His doc told us at least 6 months ago that living donor tx ould be the best for him but he can't get one. Barbara (ife of - PSC 07) > > Subject: Live donor question > To: " PSC Support Group " > > Date: Tuesday, April 7, 2009, 4:06 PM > > > > > > > > > > > > > > > > > > > > > Why don't everyone with PSC have a live donor before > the disease progresses or even if it has progressed? Why > can some and not others have this procedure? > > > > Lori A. > > > > " Aggressively Pursuing Solutions To Your Real Estate > Needs! " > > > > First Weber Group > > Cell: > > 1507 E. Sunset Drive > > Waukesha, WI 53189 > > LoriUSA@ > Yahoo.com > > www.Lori.FirstWeber .com > > > > Click here > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 My husband is not a candidate for living donor tx because he has had Pancreatic surgery. In fact, they had to adjust the pancreas surgery so he could get a tx at all. His doc told us at least 6 months ago that living donor tx ould be the best for him but he can't get one. Barbara (ife of - PSC 07) > > Subject: Live donor question > To: " PSC Support Group " > > Date: Tuesday, April 7, 2009, 4:06 PM > > > > > > > > > > > > > > > > > > > > > Why don't everyone with PSC have a live donor before > the disease progresses or even if it has progressed? Why > can some and not others have this procedure? > > > > Lori A. > > > > " Aggressively Pursuing Solutions To Your Real Estate > Needs! " > > > > First Weber Group > > Cell: > > 1507 E. Sunset Drive > > Waukesha, WI 53189 > > LoriUSA@ > Yahoo.com > > www.Lori.FirstWeber .com > > > > Click here > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 My husband is not a candidate for living donor tx because he has had Pancreatic surgery. In fact, they had to adjust the pancreas surgery so he could get a tx at all. His doc told us at least 6 months ago that living donor tx ould be the best for him but he can't get one. Barbara (ife of - PSC 07) > > Subject: Live donor question > To: " PSC Support Group " > > Date: Tuesday, April 7, 2009, 4:06 PM > > > > > > > > > > > > > > > > > > > > > Why don't everyone with PSC have a live donor before > the disease progresses or even if it has progressed? Why > can some and not others have this procedure? > > > > Lori A. > > > > " Aggressively Pursuing Solutions To Your Real Estate > Needs! " > > > > First Weber Group > > Cell: > > 1507 E. Sunset Drive > > Waukesha, WI 53189 > > LoriUSA@ > Yahoo.com > > www.Lori.FirstWeber .com > > > > Click here > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 My husbands' father and brother wanted to Be a live donor and our doctor told my husband that they really only do for children and because of my husbands size (6 feet 200 lbs. I don't think he's that big) He would need a whole liver to have a successful transplant. Subject: Live donor questionTo: "PSC Support Group" < >Date: Tuesday, April 7, 2009, 5:06 PM Why don't everyone with PSC have a live donor before the disease progresses or even if it has progressed? Why can some and not others have this procedure? Lori A. "Aggressively Pursuing Solutions To Your Real Estate Needs!" First Weber GroupCell: 1507 E. Sunset DriveWaukesha, WI 53189LoriUSA@ Yahoo.comwww.Lori.FirstWeber .com Click here Quote Link to comment Share on other sites More sharing options...
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