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 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...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 also they have to replace all the bileducts so therefore they refuse to do a live donor transplant From: Lori <lorijohnsonusa@ yahoo.com>Subject: Live donor questionTo: "PSC Support Group" <@ yahoogroups. com>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...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Barbara, What was the Pancreatic surgery and why did he need to have it? LINDA (Mom of Suzanne) My husband is not a candidate for living donor tx because he has had Pancreatic surgery. Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Barbara, What was the Pancreatic surgery and why did he need to have it? LINDA (Mom of Suzanne) My husband is not a candidate for living donor tx because he has had Pancreatic surgery. Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Barbara, What was the Pancreatic surgery and why did he need to have it? LINDA (Mom of Suzanne) My husband is not a candidate for living donor tx because he has had Pancreatic surgery. Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Carolyn, I really enjoyed your answer to the question, why don't more people use live liver donors. I knew some of the answers you gave, but had not thought of some that were mentioned. Things like if the donor will be able to miss that much work, and still be able to support their family during the time away for appointments and recovery really hadn't crossed my mind. I didn't realize some hospitals did not do liver donor transplants. Why would this be? Thanks for sharing. in MO. son, Nick (9) liver disease 1/09 Subject: Re: Live donor questionTo: Date: Tuesday, April 7, 2009, 5:59 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?> ============ ========= ========= ====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 8, 2009 Report Share Posted April 8, 2009 Carolyn, I really enjoyed your answer to the question, why don't more people use live liver donors. I knew some of the answers you gave, but had not thought of some that were mentioned. Things like if the donor will be able to miss that much work, and still be able to support their family during the time away for appointments and recovery really hadn't crossed my mind. I didn't realize some hospitals did not do liver donor transplants. Why would this be? Thanks for sharing. in MO. son, Nick (9) liver disease 1/09 Subject: Re: Live donor questionTo: Date: Tuesday, April 7, 2009, 5:59 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?> ============ ========= ========= ====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 9, 2009 Report Share Posted April 9, 2009 He had a Puesteau sp??? They basically filet the pancreas and sew it directly to the intestines - among other things. He has stones in his Pancreas and they blocked the entrance to the pancreas. They couldn't get most of the stones so they are still there. He takes pancreatic enzymes 3 x day and if he misses more than a couple of pills in a week he develops pancreatitis. I asked the docs about liver and pancreatic tx and there was not any discussion - they do not transplant both. We are just grateful that he is still eligible for a tx with all of his other medical issues. Barbara > > What was the Pancreatic surgery and why did he need to have > it? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 I know of at least 5 centers (that are in network with our insurance) that transplant pancreas, liver and intestines together- I know several kids who have had this type of multivisceral transplants, and we have been investigating centers that do them for if/when my son needs transplants. The kids I know had the transplants because they have short bowel syndrome like my son. My son has had acute pancreatitis 4 times after obstructions/stones and has chronic pancreatitis problems now. What center are you talking about that said they don't transplant both ? Lori lucky mom blessed with triplets > > > From: Lengyel > > > What was the Pancreatic surgery and why did he need to have > > it? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Barbara, Who told you that they don't transplant both? Did you two talk to Dr. Belnap? He does both (I don't know about at the same time). I have a friend who had stomach, liver, duodenum, small bowel, and pancreas transplant. He had his done at the University of Pittsburgh about 6 years ago. Which surgeon did the Puesteau? Hope you have stayed out of the ER this week. I can't get anywhere with trying to get this kidney thing figured out. Everything I read on the Internet isn't good though. Take care, cheryl ID -----Original message----- I asked the docs about liver and pancreatic tx and there was not any discussion - they do not transplant both. We are just grateful that he is still eligible for a tx with all of his other medical issues. > > Barbara > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Barbara, Who told you that they don't transplant both? Did you two talk to Dr. Belnap? He does both (I don't know about at the same time). I have a friend who had stomach, liver, duodenum, small bowel, and pancreas transplant. He had his done at the University of Pittsburgh about 6 years ago. Which surgeon did the Puesteau? Hope you have stayed out of the ER this week. I can't get anywhere with trying to get this kidney thing figured out. Everything I read on the Internet isn't good though. Take care, cheryl ID -----Original message----- I asked the docs about liver and pancreatic tx and there was not any discussion - they do not transplant both. We are just grateful that he is still eligible for a tx with all of his other medical issues. > > Barbara > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Barbara, Who told you that they don't transplant both? Did you two talk to Dr. Belnap? He does both (I don't know about at the same time). I have a friend who had stomach, liver, duodenum, small bowel, and pancreas transplant. He had his done at the University of Pittsburgh about 6 years ago. Which surgeon did the Puesteau? Hope you have stayed out of the ER this week. I can't get anywhere with trying to get this kidney thing figured out. Everything I read on the Internet isn't good though. Take care, cheryl ID -----Original message----- I asked the docs about liver and pancreatic tx and there was not any discussion - they do not transplant both. We are just grateful that he is still eligible for a tx with all of his other medical issues. > > Barbara > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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