Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 HI - Thanks for the living donor story. Very interesting. Hope you are doing well. H. Living Donors << File: ATT00004.txt; charset = x-user-defined >> << Message: Living donors >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 -- Be sure to watch the transplant special of Redford if you get a chance. It showed a guy who was doing as well as could be expected (he at least didn't look like he was in a great deal of distress) & he was asking his dr why he couldn't be transplanted now before got worse. Of course, we all know the answer - his dr. said " for many reasons, not the least of which is lack of donors. " It then showed him later in the program at death's door & being wheeled in the OR for his tx - he wasn't even conscious. He had a longer recovery, but it showed him at the end and he looked much better and was even riding a motorcycle. So you see - if we do have to wait, it still can be done. Hope I didn't give too much of the program away, but wanted to give you some hope so you wouldn't be as nervous about having to wait to get a donor. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 Hi, , We've still GOT to get together. I do have some time these days. I have no fevers, some pain, but walked a half mile this a.m., so it's better than it has been in the past. I'm going to New England Med. for their pre-transplant support group meeting this p.m.---I hate driving in Boston! But the info is good. Hilton Cowmeadow wrote: > HI - > Thanks for the living donor story. Very interesting. Hope you are doing well. > H. > > Living Donors > > << File: ATT00004.txt; charset = x-user-defined >> << Message: Living donors >> > > ------------------------------------------------------------------------ > Click Here to apply for a NextCard Internet Visa and start earning > FREE travel in HALF the time with the NextCard Rew@rds Program. > http://clickhere./click/449 > > eGroups.com home: /group/ > - Simplifying group communications > > ------------------------------------------------------------------------ > > Part 1.2 Type: application/ms-tnef > Encoding: base64 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Thanks, Laurie. I haven't been too upset until this last hospital stay. When I developed the third stricture and my symptoms got worse, then I became worried. I think the problem is the wait time here in New England, and my insurance requires that I get my transplant here. I don't know why New England is so awful about wait times, but we are the worst in the nation by far....2 to 3 years. And this time, I know my doc is really concerned because of my lack of seniority on the list. I don't have HBO, but I am going to ask friends to tape it for me. I appreciate your encouragement. Oceandrmer@... wrote: > -- > Be sure to watch the transplant special of Redford if you get a chance. > It showed a guy who was doing as well as could be expected (he at least > didn't look like he was in a great deal of distress) & he was asking his dr > why he couldn't be transplanted now before got worse. Of course, we all know > the answer - his dr. said " for many reasons, not the least of which is lack > of donors. " It then showed him later in the program at death's door & being > wheeled in the OR for his tx - he wasn't even conscious. He had a longer > recovery, but it showed him at the end and he looked much better and was even > riding a motorcycle. So you see - if we do have to wait, it still can be > done. > > Hope I didn't give too much of the program away, but wanted to give you some > hope so you wouldn't be as nervous about having to wait to get a donor. > > Laurie > > ------------------------------------------------------------------------ > Click Here to apply for a NextCard Internet Visa and start earning > FREE travel in HALF the time with the NextCard Rew@rds Program. > http://clickhere./click/449 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 mltill/dwalderich wrote: > > I just got this from Charlie Fiske.... > I talked to my doc about living donors for those of us with PSC. She > said it could be done because they will take part of the bile duct of > the donor and then use the donee's small intestines to reconstruct the > rest of the duct. > I will talk to her about this possibility further in two weeks when I go > in for the next ERCP (to try to open up the third stricture I developed > in my main duct)...That is scheduled for Aug. 10.... > > It's scary to think about, but then I know that I should be > transplanted before my symptoms get worse...such a dilemma.... > > > > ------------------------------------------------------------------------ > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > http://clickhere./click/606 > > eGroups.com home: /group/ > - Simplifying group communications > > --------------------------------------------------------------- > > Subject: Living donors > Date: Mon, 2 Aug 1999 10:10:47 -0400 > > To: " Fiske " > > New York Times August 2, 1999 > > Live Donors Revolutionize Liver Care > > Join a Discussion on Science in the News > ---------------------------------------------------------------------------- > ---- > > By DENISE GRADY > NEW YORK -- Growing up in Brooklyn in the 1950s, Felicia Vilardi knew that > she could count on her older brother, , to look after her. Their father > had died when she was 4 and 8, and, she recalls, " was always my > protector. " > > The kid sister is 50 now, Felicia LaBanca by marriage, a direct, determined > woman with strong features and intense brown eyes. On Thursday morning at > Mount Sinai Hospital in Manhattan, it was her turn, not just to protect her > brother, but to save his life. Side by side in hospital beds, the two > reached out to clasp hands and say goodbye before being moved to adjacent > operating rooms. > > " Take care of him, " she told the nurse who wheeled Vilardi away. > > " Take care of her, " he called to the one attending his sister. > > Mrs. LaBanca, a perfectly healthy woman, was about to let surgeons cut away > 60 percent of her liver -- its entire right lobe -- and transplant it into > her brother, whose cancerous liver was to be removed. Within a month or so, > doctors expected, both the donor and recipient pieces would grow back into > full-sized organs, through the liver's unique ability to regenerate. > > This daring procedure, the use of a living donor to provide a liver > transplant for an adult, has been performed fewer than 100 times in the > United States over the past year and a half, at only a few medical centers. > It is a bold response to the shortage of livers from cadavers, by desperate > families and surgeons who say they are frustrated by seeing patients > deteriorate or die while waiting for organs to become available. > > The living-donor procedure is catching on, and doctors say it could rewrite > the history of liver transplantation. It is letting people bypass the > transplant waiting lists and schedule surgery when it is best for the > patient, rather than when an organ becomes available, by which time the > patient might be in critical condition. > > " It becomes elective surgery, " said Dr. Myron Schwartz, deputy director of > liver transplantation and one of the surgeons who operated on Vilardi. > > Dr. Lake, director of liver transplantation at the University of > Minnesota, said, " It could eventually rival cadaver transplants or maybe > even outnumber them. " Lake said that his university, along with many other > medical centers, including New York University and the University of > California at Los Angeles, is planning to offer the procedure soon. > > By last week, surgeons at Virginia Commonwealth University in Richmond, led > by Dr. Amadeo Marcos, had performed 36 liver transplants in adults from live > donors, all using the right lobe of the liver, the larger of its two > sections. Donors have included siblings, grown children, spouses, friends, > and in one case a 46-year-old man who came forward to help a woman he had > never met. Doctors at Mount Sinai have done 16, including five using the > right lobe. Three were done last week alone. Other centers have done fewer > transplants. No deaths or major complications have been reported among the > donors. > > " I don't think we'd ever use living donors if there was an adequate supply > of cadaveric organs, " said Dr. , director of liver > transplantation at Mount Sinai, who operated on Mrs. LaBanca. " But there are > just not enough. " > > Dr. Emond, chief of the liver program at New York Presbyterian > Hospital, said: " As recently as six months ago I counseled a family that > this was still very early and we were not clear about the risks. But the > demand for organs is higher than average, and our patients in this region > are really suffering. Now I feel there is an ethical imperative to go > forward. " > > As of July 28, 13,519 people in the United States were awaiting liver > transplants, according to the United Network for Organ Sharing. Last year, > only 4,450 liver transplants were performed, and in 1997, 1,129 people died > while on the waiting list. > > Many others deteriorate, making the transplant operation more difficult and > risky when it is finally done. People with cancer, like Vilardi, may lose > out altogether, because if the tumor grows too large or spreads beyond the > liver while they are waiting, it is too late for a transplant. The shortage > is expected to become worse as more people like Vilardi, infected decades > ago with hepatitis C, develop liver failure or cancer. > > The increasing use of living donors worries some doctors, who fear that the > donors, unable to say no to friends or relatives who need a transplant, may > be taking too much of a risk. Even though donors are counseled to make sure > that they are acting freely and understand the risks, a doctor who spoke on > the condition of anonymity said: " It's like holding a gun to the heads of > relatives. It's a brave and honorable thing to do, but this is a major, > major operation. " > > Surgeons say that the operation is technically difficult, harder to perform > than a liver transplant from a cadaver, largely because blood vessels and > bile ducts must be painstakingly divided between the donor and the > recipient, instead of all going to the recipient. > > The surgeons say they use extreme caution in these operations, because there > is nothing they dread more than the death of a healthy person who > volunteered for surgery just to help someone else. But Emond and Schwartz > said they expected that sooner or later a donor would die, as the operation > became more common and was taken up by less experienced surgeons. > > " It's very complicated, " said. " It's not something everybody should > be doing. " > > Until recently, American surgeons did not dare use living donors for adult > transplants, because it was considered too risky to remove so much of the > donor's liver. The liver is divided into right and left lobes, with the > right making up about 60 percent of the organ, and many adults who need > transplants would require the bigger right lobe. Partial liver transplants > were done only from adults to children, because that procedure requires > removing a much smaller piece, a segment of the left lobe amounting to only > 15 percent to 20 percent of the liver. > > But in the early to mid-1990s, surgeons in Japan and Hong Kong showed that > the right lobe could be removed safely for adults. Donors need only match > the recipient's blood type, and be healthy and large enough to provide the > transplant. > > With a living donor, the operation can be done while the patient is still > strong, with high odds of long-term survival. Surgeons say the procedure may > also provide healthier livers than those that patients get from cadavers. > One reason is that the organ is usually transplanted quickly, soon after it > is removed from the donor, instead of being stored on ice for hours, the way > cadaver organs usually are. In addition, living donors are tested more > extensively than cadaver donors, and only the healthiest are selected. > > Vilardi learned only about a month ago that he needed a liver transplant. He > had undergone surgery in February 1998 for liver cancer brought on by his > hepatitis, and recently, tests showed that the cancer had recurred. His > surgeon, Schwartz, asked if he knew anyone who would act as a donor. > > Practically everyone he knew offered, it seemed: his wife, his son and > daughter, Mrs. LaBanca and her husband and sons, cousins, his 78-year-old > mother, friends and even people he worked with. > > " It was quite a nice feeling, " he said. > > Vilardi is a big man, and some volunteers were ruled out because they were > too small. Others did not match his blood type, A-positive. And he was > troubled by the idea of using his children or nephews, ages 19 to 26. > > Mrs. LaBanca met all the requirements, and passed a battery of tests to make > sure she could withstand the operation. " Take me, " she kept saying. " I > didn't think twice, " she said before the surgery. " It had to be done, so > we're going to do it. " > > The two operations last Thursday were precisely timed to minimize the risks, > particularly to Mrs. LaBanca. Vilardi was taken to the operating room first, > at about 8:30 a.m., so that a surgical team led by Dr. Sheiner and > Schwartz could open his abdomen and make sure that the cancer had not spread > beyond his liver, in which case a transplant would be pointless. That took > about two hours. > > Only then, when it was clear that the transplant could take place, was Mrs. > LaBanca taken to the operating room adjoining her brother's, and the process > of removing part of her liver begun by a second surgical team, led by > . > > But it would take several hours to free the organ, and meanwhile Vilardi > would be kept stable, under anesthesia, until it was time for surgeons to > begin removing his liver. > > Vilardi's liver came out at 3 p.m., and the right lobe of his sister's about > two minutes later. The organs looked strikingly different: hers was smooth, > gleaming and supple, like a picture in a textbook, but his appeared hard and > shrunken, with a pebbly, nodular texture, the hallmark of scarring from > hepatitis C. > > Surgeons quickly rinsed Mrs. LaBanca's liver to clear out blood clots, took > a tiny plug of it for testing and recorded its weight, 830 grams (1.8 > pounds). A nurse from Vilardi's operating room bustled in, demanding to know > what was taking them so long. > > A few minutes later, Dr. Sheiner and her team were starting to sew the liver > into Vilardi, and 's team was making sure that Mrs. LaBanca had no > leaky blood vessels or bile ducts, in preparation for closing her incision. > > By 4 p.m., Mrs. LaBanca's abdomen was stapled shut, the incision the shape > of a large, inverted letter Y that surgeons call the Mercedes, after the > automobile logo. By 4:15 p.m., as anesthesia was withdrawn, she was > beginning to stir, to move her head and arms and squeeze the doctors' > fingers when they asked her to. The team agreed it was the fastest and > smoothest living donor procedure they had done. > > " Felicia, the surgery's over, " a nurse said. " You're doing good. " > > " How's my brother? " she asked. > > Next door, Dr. Sheiner had connected the blood vessels of Mrs. LaBanca's > liver to Vilardi's vessels, and the organ had begun to function immediately. > > " It's pouring out bile, " Dr. Sheiner said delightedly. > > Bile ducts remained to be connected, and Vilardi would not leave the > operating room until 8 p.m., but shortly after 5 p.m. the lead surgeons took > a break to talk to the family, some of whom had been at the hospital since 6 > a.m. The relatives sprang from their seats, hugged each other, laughed and > cried and wiped away tears at the good news. > > Danile, Vilardi's and Mrs. LaBanca's mother, had turned pale and > withdrawn during the hours that both her children were in surgery, but now > she pumped the doctors' hands, thanking them repeatedly. > > Schwartz warned the family that although Vilardi's operation had gone well, > transplant recipients often had complications. > > " A perfect transplant doesn't guarantee a perfect result, " he said. But the > team would deal with any complications. " Don't even worry about it, " he > said. " There's a great chance he'll be fine. " > > By Saturday morning, Vilardi was feeling well enough to visit his sister, > who was expected to go home in two or three days. A nurse wheeled him to her > room, but outside the door he insisted on getting out of the wheelchair so > that Mrs. LaBanca would see him walk into her room. He told her he loved her > and presented her with an onion -- to go with her liver. She was still > laughing when the nurses insisted on taking him back to his room to rest I just read about the live donor transplant that was recorded as by Mrs. LaBanca. They only listed that hospital in New York and the one in California. Where are the others that have braved doing this? Maynard iis listed as third stage by Mayo Clinic. How do they decide on the stage of PSC that you are.??? He had very severe colitis when we were there last time in May and he had not had it before He is on sulphur and so far it has gotten in fairly well under control. He was on the perfenidone study in Fall, 98 and it about killed him-- but another person we know in Seatle apparently has benefitted from it. Hhe is now on the silimarin (milky thistle) study. Maynard's main problem is extreme lack of energy. He was on inderal aand Vit. K for his varices, Hhe was taking the inderal every day but since he has had no problem so far they are trying it only three times a week. I sincerely hope we are not jumping from the frying pan to the fire.. Do any of you have any other suggestions? Finally after trying all sorts of combinationns Mmaynard takes a pain pill abouut 15 to 30 minutes before a meal and then is able to eat a fairly decent meal. He tries to remember to take an Ensure Plus at bed time, whiich is 360 calories. He has lost 50 lbs. so far. Sso far he does not have the usual itching--which we feel is a blessing. He was having bloating problems --his ankles and just above his kiidneys in the back. Of course his stomach is enlarged. As of last week-end we were able to get rid of most of the fluid except his stomach. Wwe have been going to Mayo Clinic since he had a sudden rise in albumin in April, l996. They seem to have a restrain against older people getting transplants. Maynard was 69 yrs. old on April, l999. He feels he deserves a chance as much as the next guy. He was always in good health until PSC came aalong. Do you know how any of the other centers feel about this? Mmaynard is up and about but his disposition has something to be desired. Again we are very interested in the live donor program. Good luck to all of you. We visited wwith some of the former traansplant patients at Mayo's. It really was wwonderful to see all of them God bless --bec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 mltill/dwalderich wrote: > > bec, > I was listed at status 2B in March 1998 after my bilirubin shot up to 9. It did > return to 2 after an ERCP which took care of the blockage. According to the > Transplant Team, I am 2B because of the many bouts of cholangitis, as well as > other complications (internal bleeding, etc.). I have been hospitalized 5 times > since 3/98 due to cholangitis or an internal bleed, and have had numerous ERCP's > and bandings to take care of the symptoms caused by the disease. In addition, I > have chronic anemia (since 3/98), and recently I have begun suffering spontaneous > nosebleeds. > > As far as I know, the live donor procedure is relatively new...Two have been done > in Boston so far--about 100 nationwide. I am seriously looking into it because > apparently I still have a long wait on the list---New England's wait is horribly > long, the worst in the nation. I may have found a potential donor, and I'll be > asking my doctor more about this next week when I go in for the ERCP. I'll keep > you informed of what I find out. > > > bec Shaw wrote: > > > mltill/dwalderich wrote: > > > > > > I just got this from Charlie Fiske.... > > > I talked to my doc about living donors for those of us with PSC. She > > > said it could be done because they will take part of the bile duct of > > > the donor and then use the donee's small intestines to reconstruct the > > > rest of the duct. > > > I will talk to her about this possibility further in two weeks when I go > > > in for the next ERCP (to try to open up the third stricture I developed > > > in my main duct)...That is scheduled for Aug. 10.... > > > > > > It's scary to think about, but then I know that I should be > > > transplanted before my symptoms get worse...such a dilemma.... > > > > > > > > > > > > ------------------------------------------------------------------------ > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > http://clickhere./click/606 > > > > > > eGroups.com home: /group/ > > > - Simplifying group communications > > > > > > --------------------------------------------------------------- > > > > > > Subject: Living donors > > > Date: Mon, 2 Aug 1999 10:10:47 -0400 > > > > > > To: " Fiske " > > > > > > New York Times August 2, 1999 > > > > > > Live Donors Revolutionize Liver Care > > > > > > Join a Discussion on Science in the News > > > ---------------------------------------------------------------------------- > > > ---- > > > > > > By DENISE GRADY > > > NEW YORK -- Growing up in Brooklyn in the 1950s, Felicia Vilardi knew that > > > she could count on her older brother, , to look after her. Their father > > > had died when she was 4 and 8, and, she recalls, " was always my > > > protector. " > > > > > > The kid sister is 50 now, Felicia LaBanca by marriage, a direct, determined > > > woman with strong features and intense brown eyes. On Thursday morning at > > > Mount Sinai Hospital in Manhattan, it was her turn, not just to protect her > > > brother, but to save his life. Side by side in hospital beds, the two > > > reached out to clasp hands and say goodbye before being moved to adjacent > > > operating rooms. > > > > > > " Take care of him, " she told the nurse who wheeled Vilardi away. > > > > > > " Take care of her, " he called to the one attending his sister. > > > > > > Mrs. LaBanca, a perfectly healthy woman, was about to let surgeons cut away > > > 60 percent of her liver -- its entire right lobe -- and transplant it into > > > her brother, whose cancerous liver was to be removed. Within a month or so, > > > doctors expected, both the donor and recipient pieces would grow back into > > > full-sized organs, through the liver's unique ability to regenerate. > > > > > > This daring procedure, the use of a living donor to provide a liver > > > transplant for an adult, has been performed fewer than 100 times in the > > > United States over the past year and a half, at only a few medical centers. > > > It is a bold response to the shortage of livers from cadavers, by desperate > > > families and surgeons who say they are frustrated by seeing patients > > > deteriorate or die while waiting for organs to become available. > > > > > > The living-donor procedure is catching on, and doctors say it could rewrite > > > the history of liver transplantation. It is letting people bypass the > > > transplant waiting lists and schedule surgery when it is best for the > > > patient, rather than when an organ becomes available, by which time the > > > patient might be in critical condition. > > > > > > " It becomes elective surgery, " said Dr. Myron Schwartz, deputy director of > > > liver transplantation and one of the surgeons who operated on Vilardi. > > > > > > Dr. Lake, director of liver transplantation at the University of > > > Minnesota, said, " It could eventually rival cadaver transplants or maybe > > > even outnumber them. " Lake said that his university, along with many other > > > medical centers, including New York University and the University of > > > California at Los Angeles, is planning to offer the procedure soon. > > > > > > By last week, surgeons at Virginia Commonwealth University in Richmond, led > > > by Dr. Amadeo Marcos, had performed 36 liver transplants in adults from live > > > donors, all using the right lobe of the liver, the larger of its two > > > sections. Donors have included siblings, grown children, spouses, friends, > > > and in one case a 46-year-old man who came forward to help a woman he had > > > never met. Doctors at Mount Sinai have done 16, including five using the > > > right lobe. Three were done last week alone. Other centers have done fewer > > > transplants. No deaths or major complications have been reported among the > > > donors. > > > > > > " I don't think we'd ever use living donors if there was an adequate supply > > > of cadaveric organs, " said Dr. , director of liver > > > transplantation at Mount Sinai, who operated on Mrs. LaBanca. " But there are > > > just not enough. " > > > > > > Dr. Emond, chief of the liver program at New York Presbyterian > > > Hospital, said: " As recently as six months ago I counseled a family that > > > this was still very early and we were not clear about the risks. But the > > > demand for organs is higher than average, and our patients in this region > > > are really suffering. Now I feel there is an ethical imperative to go > > > forward. " > > > > > > As of July 28, 13,519 people in the United States were awaiting liver > > > transplants, according to the United Network for Organ Sharing. Last year, > > > only 4,450 liver transplants were performed, and in 1997, 1,129 people died > > > while on the waiting list. > > > > > > Many others deteriorate, making the transplant operation more difficult and > > > risky when it is finally done. People with cancer, like Vilardi, may lose > > > out altogether, because if the tumor grows too large or spreads beyond the > > > liver while they are waiting, it is too late for a transplant. The shortage > > > is expected to become worse as more people like Vilardi, infected decades > > > ago with hepatitis C, develop liver failure or cancer. > > > > > > The increasing use of living donors worries some doctors, who fear that the > > > donors, unable to say no to friends or relatives who need a transplant, may > > > be taking too much of a risk. Even though donors are counseled to make sure > > > that they are acting freely and understand the risks, a doctor who spoke on > > > the condition of anonymity said: " It's like holding a gun to the heads of > > > relatives. It's a brave and honorable thing to do, but this is a major, > > > major operation. " > > > > > > Surgeons say that the operation is technically difficult, harder to perform > > > than a liver transplant from a cadaver, largely because blood vessels and > > > bile ducts must be painstakingly divided between the donor and the > > > recipient, instead of all going to the recipient. > > > > > > The surgeons say they use extreme caution in these operations, because there > > > is nothing they dread more than the death of a healthy person who > > > volunteered for surgery just to help someone else. But Emond and Schwartz > > > said they expected that sooner or later a donor would die, as the operation > > > became more common and was taken up by less experienced surgeons. > > > > > > " It's very complicated, " said. " It's not something everybody should > > > be doing. " > > > > > > Until recently, American surgeons did not dare use living donors for adult > > > transplants, because it was considered too risky to remove so much of the > > > donor's liver. The liver is divided into right and left lobes, with the > > > right making up about 60 percent of the organ, and many adults who need > > > transplants would require the bigger right lobe. Partial liver transplants > > > were done only from adults to children, because that procedure requires > > > removing a much smaller piece, a segment of the left lobe amounting to only > > > 15 percent to 20 percent of the liver. > > > > > > But in the early to mid-1990s, surgeons in Japan and Hong Kong showed that > > > the right lobe could be removed safely for adults. Donors need only match > > > the recipient's blood type, and be healthy and large enough to provide the > > > transplant. > > > > > > With a living donor, the operation can be done while the patient is still > > > strong, with high odds of long-term survival. Surgeons say the procedure may > > > also provide healthier livers than those that patients get from cadavers. > > > One reason is that the organ is usually transplanted quickly, soon after it > > > is removed from the donor, instead of being stored on ice for hours, the way > > > cadaver organs usually are. In addition, living donors are tested more > > > extensively than cadaver donors, and only the healthiest are selected. > > > > > > Vilardi learned only about a month ago that he needed a liver transplant. He > > > had undergone surgery in February 1998 for liver cancer brought on by his > > > hepatitis, and recently, tests showed that the cancer had recurred. His > > > surgeon, Schwartz, asked if he knew anyone who would act as a donor. > > > > > > Practically everyone he knew offered, it seemed: his wife, his son and > > > daughter, Mrs. LaBanca and her husband and sons, cousins, his 78-year-old > > > mother, friends and even people he worked with. > > > > > > " It was quite a nice feeling, " he said. > > > > > > Vilardi is a big man, and some volunteers were ruled out because they were > > > too small. Others did not match his blood type, A-positive. And he was > > > troubled by the idea of using his children or nephews, ages 19 to 26. > > > > > > Mrs. LaBanca met all the requirements, and passed a battery of tests to make > > > sure she could withstand the operation. " Take me, " she kept saying. " I > > > didn't think twice, " she said before the surgery. " It had to be done, so > > > we're going to do it. " > > > > > > The two operations last Thursday were precisely timed to minimize the risks, > > > particularly to Mrs. LaBanca. Vilardi was taken to the operating room first, > > > at about 8:30 a.m., so that a surgical team led by Dr. Sheiner and > > > Schwartz could open his abdomen and make sure that the cancer had not spread > > > beyond his liver, in which case a transplant would be pointless. That took > > > about two hours. > > > > > > Only then, when it was clear that the transplant could take place, was Mrs. > > > LaBanca taken to the operating room adjoining her brother's, and the process > > > of removing part of her liver begun by a second surgical team, led by > > > . > > > > > > But it would take several hours to free the organ, and meanwhile Vilardi > > > would be kept stable, under anesthesia, until it was time for surgeons to > > > begin removing his liver. > > > > > > Vilardi's liver came out at 3 p.m., and the right lobe of his sister's about > > > two minutes later. The organs looked strikingly different: hers was smooth, > > > gleaming and supple, like a picture in a textbook, but his appeared hard and > > > shrunken, with a pebbly, nodular texture, the hallmark of scarring from > > > hepatitis C. > > > > > > Surgeons quickly rinsed Mrs. LaBanca's liver to clear out blood clots, took > > > a tiny plug of it for testing and recorded its weight, 830 grams (1.8 > > > pounds). A nurse from Vilardi's operating room bustled in, demanding to know > > > what was taking them so long. > > > > > > A few minutes later, Dr. Sheiner and her team were starting to sew the liver > > > into Vilardi, and 's team was making sure that Mrs. LaBanca had no > > > leaky blood vessels or bile ducts, in preparation for closing her incision. > > > > > > By 4 p.m., Mrs. LaBanca's abdomen was stapled shut, the incision the shape > > > of a large, inverted letter Y that surgeons call the Mercedes, after the > > > automobile logo. By 4:15 p.m., as anesthesia was withdrawn, she was > > > beginning to stir, to move her head and arms and squeeze the doctors' > > > fingers when they asked her to. The team agreed it was the fastest and > > > smoothest living donor procedure they had done. > > > > > > " Felicia, the surgery's over, " a nurse said. " You're doing good. " > > > > > > " How's my brother? " she asked. > > > > > > Next door, Dr. Sheiner had connected the blood vessels of Mrs. LaBanca's > > > liver to Vilardi's vessels, and the organ had begun to function immediately. > > > > > > " It's pouring out bile, " Dr. Sheiner said delightedly. > > > > > > Bile ducts remained to be connected, and Vilardi would not leave the > > > operating room until 8 p.m., but shortly after 5 p.m. the lead surgeons took > > > a break to talk to the family, some of whom had been at the hospital since 6 > > > a.m. The relatives sprang from their seats, hugged each other, laughed and > > > cried and wiped away tears at the good news. > > > > > > Danile, Vilardi's and Mrs. LaBanca's mother, had turned pale and > > > withdrawn during the hours that both her children were in surgery, but now > > > she pumped the doctors' hands, thanking them repeatedly. > > > > > > Schwartz warned the family that although Vilardi's operation had gone well, > > > transplant recipients often had complications. > > > > > > " A perfect transplant doesn't guarantee a perfect result, " he said. But the > > > team would deal with any complications. " Don't even worry about it, " he > > > said. " There's a great chance he'll be fine. " > > > > > > By Saturday morning, Vilardi was feeling well enough to visit his sister, > > > who was expected to go home in two or three days. A nurse wheeled him to her > > > room, but outside the door he insisted on getting out of the wheelchair so > > > that Mrs. LaBanca would see him walk into her room. He told her he loved her > > > and presented her with an onion -- to go with her liver. She was still > > > laughing when the nurses insisted on taking him back to his room to rest > > > > I just read about the live donor transplant that was recorded as > > by Mrs. LaBanca. They only listed that hospital in New York and the > > one in California. Where are the others that have braved doing this? > > Maynard iis listed as third stage by Mayo Clinic. How do they decide > > on the stage of PSC that you are.??? He had very severe colitis when > > we were there last time in May and he had not had it before > > He is on sulphur and so far it has gotten in fairly well under control. > > He was on the perfenidone study in Fall, 98 and it about killed him-- > > but another person we know in Seatle apparently has benefitted from it. > > > > Hhe is now on the silimarin (milky thistle) study. Maynard's main > > problem is extreme lack of energy. He was on inderal aand Vit. K > > for his varices, Hhe was taking the inderal every day but since he has > > had no problem so far they are trying it only three times a week. > > I sincerely hope we are not jumping from the frying pan to the fire.. > > > > Do any of you have any other suggestions? > > > > Finally after trying all sorts of combinationns Mmaynard takes a > > pain pill abouut 15 to 30 minutes before a meal and then is able to eat > > a fairly decent meal. He tries to remember to take an Ensure Plus > > at bed time, whiich is 360 calories. He has lost 50 lbs. so far. > > > > Sso far he does not have the usual itching--which we feel is a blessing. > > He was having bloating problems --his ankles and just above his kiidneys > > in the back. Of course his stomach is enlarged. > > As of last week-end we were able to get rid of most of the fluid except > > his stomach. > > > > Wwe have been going to Mayo Clinic since he had a sudden rise > > in albumin in April, l996. They seem to have a restrain against > > older people getting transplants. Maynard was 69 yrs. old on > > April, l999. He feels he deserves a chance as much as the next guy. He > > was always in good health until PSC came aalong. > > > > Do you know how any of the other centers feel about this? > > > > Mmaynard is up and about but his disposition has something to be > > desired. > > > > Again we are very interested in the live donor program. > > > > Good luck to all of you. We visited wwith some of the former > > traansplant patients at Mayo's. It really was wwonderful to see > > all of them > > > > God bless --bec > > > > ------------------------------------------------------------------------ > > MyPoints-Free Rewards When You're Online. > > Start with up to 150 Points for joining! > > http://clickhere./click/630 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > http://clickhere./click/606 > > eGroups.com home: /group/ > - Simplifying group communications -- My husband has not had any problems compared to those you have had and Mayo's lists him as Stage 3. When he went up there the first time in l996 his bilirubin(?) was high and he had a blockage. They did an ERCP at that time. The next time we went was just for a routinne check and they did nothing to him. The first ERCP stopped itching on his legs and he has not had it again. In August,98 he started on the perfenidone study. They did a battery of tests then including an ERCP. He has thickening in the wall of his gallbladder but they are just letting it ride for now. He does have verices. Perfenidone was really very mean to Maynard. It really gave his stomach fits-- gave him sun sensitivity, and generally made him feel awful. He quit the program in January and was given a colonoscopy annd they found he had a very very bad case of colitis. Wwhether it was caused by the drug they aren't sure but he is off it. They put him on a sulphur drug and it seems to have cleared it up and we hope it stays. He had had no bowel problem of any kind until that drug study. He had begun tp have somme bloating so they put him on aldactone for that and it seems to have done the job. Of course his stomach is promenent and bothers him being so large. He wears suspenders now because he says a belt hurts. He has had only two ERCP's and some folks we have talked to have had a dozen or more. He was put on the list as of January. I hope we can get some place that is willing to give him chance at a trannsplant. Maynard was 69 years old on April 18, and Mayo's doesn't give him much if any hope of getting liver there. We are talking to Univ. of Aalabama in Birminngham to see what they will do. So these stages of PSC don't seem to make sense to me. Thanks for your input. God bless- bec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 Dear , I am praying for your ERCP for August 10th!!!! Sorry I haven't been online much but the circulation problems are cumbersome!! But that doesn't mean that I'm not praying for the whole group each and every day!!! I'm convinced that all of your prayers and prayers from all over the US is what got me my liver in time!! Much love and prayers, Jacquelyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1999 Report Share Posted August 8, 1999 no, I'm sorry..I didn't go to the ER. I made up my mind that if I went to the ER, they would just call that same Dr. that I had spoken to. I'm going to try to hold out until my appt. with my regular Dr. and then I will say more to him at that time. I'm feeling better than I was the other night, and haven't been running a very high temp. So maybe it was just for that day (or is that wishful thinking? =) ) I hope everyone else is doing great, and I will keep you posted. Love. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1999 Report Share Posted August 8, 1999 , Thanks so much for the prayers...That same candle is burning for you (It's a big one in a large jar so it lasts a long time!)....I so hope that your docs can take care of that horrible leg problem. Two more days till the ERCP.... " Think very stretchy bile ducts " . , I so hope you went to the emergency room. Your symptoms sound very serious. I had terrible diahrrea in the hospital in July, and my postassium levels got all screwed up, as did my blood sugar...I had to have IV rehydration. Given your weight loss, I'd wonder if you weren't losing a lot of water fast...So I agree with others on the list. Go to the hospital, if you haven't already...and drink lots and lots of fluids. Peg, I need to stay in New England due to the insurance requirements. They've already authorized full payment of the transplant at New England Med. Plus, I really want to work with a transplant team I can trust and a GI doc who knows my situation as well as Dr. Lee does. It is such a dilemma...but, on Tuesday, maybe I can find out more about the living donor option. Thanks for your comments. Sorry I am so late getting back to everyone...I took a couple of days off to go to Maine and stay in a cottage that a friend owns. We had a great time. I sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. It was good to not think about anything related to this disease for a while...a mini vacation. I learned to knit socks recently, and I made a pair for a friend's birthday (She's babysat me many times after my ERCP procedures). Now I'm knitting slipper socks for a charity project that my knit group is doing--making afghans and slippers for all the kids in a local group home. This knitting stuff keeps my mind on other things than the transplant, and it is a great stress reducer. I keep cutting back on work, but it never seems like enough. Oh, well, I'm rambling. Here's hoping you all had a relatively good weekend. Thanks for being there. JQS2@... wrote: > Dear , > I am praying for your ERCP for August 10th!!!! Sorry I haven't been > online much but the circulation problems are cumbersome!! But that doesn't > mean that I'm not praying for the whole group each and every day!!! I'm > convinced that all of your prayers and prayers from all over the US is what > got me my liver in time!! > Much love and prayers, > Jacquelyn > > ------------------------------------------------------------------------ > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > http://clickhere./click/606 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1999 Report Share Posted August 8, 1999 , Russ sent me an article about a doctor at UCLA, they are doing quite a few split liver transplants. I've told Phil I would give him part of my liver but he said then who would take care of us. We have no family here and I need to work or we won't have much of an income. I still can't imagine how they could do that anyway because Phil's main problem is his main biliary tree. I'll have to question his liver doctor a little further because he said they could transplant 2 PSC patients they just split the ducts - there is only one main bile duct so I don't get it. Sounds like your little hiatus was nice. I used to crochet and knit and crewel and macrame but I have problems doing any of that stuff with my bad neck. I don't do any of that creative stuff. Just stuff on the computer. Creating something useful gives you such a sense of accomplishment and satisfaction. Well I've got to go be creative now and go juggle our budget. Take care. Peg mltill/dwalderich wrote: > , > Thanks so much for the prayers...That same candle is burning for you (It's a > big one in a large jar so it lasts a long time!)....I so hope that your docs > can take care of that horrible leg problem. Two more days till the > ERCP.... " Think very stretchy bile ducts " . > , > I so hope you went to the emergency room. Your symptoms sound very serious. I > had terrible diahrrea in the hospital in July, and my postassium levels got all > screwed up, as did my blood sugar...I had to have IV rehydration. Given your > weight loss, I'd wonder if you weren't losing a lot of water fast...So I agree > with others on the list. Go to the hospital, if you haven't already...and > drink lots and lots of fluids. > > Peg, > I need to stay in New England due to the insurance requirements. They've > already authorized full payment of the transplant at New England Med. Plus, I > really want to work with a transplant team I can trust and a GI doc who knows > my situation as well as Dr. Lee does. It is such a dilemma...but, on Tuesday, > maybe I can find out more about the living donor option. Thanks for your > comments. > > Sorry I am so late getting back to everyone...I took a couple of days off to go > to Maine and stay in a cottage that a friend owns. We had a great time. I > sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. It was > good to not think about anything related to this disease for a while...a mini > vacation. I learned to knit socks recently, and I made a pair for a friend's > birthday (She's babysat me many times after my ERCP procedures). Now I'm > knitting slipper socks for a charity project that my knit group is > doing--making afghans and slippers for all the kids in a local group home. > This knitting stuff keeps my mind on other things than the transplant, and it > is a great stress reducer. > > I keep cutting back on work, but it never seems like enough. > Oh, well, I'm rambling. Here's hoping you all had a relatively good weekend. > Thanks for being there. > > > JQS2@... wrote: > > > Dear , > > I am praying for your ERCP for August 10th!!!! Sorry I haven't been > > online much but the circulation problems are cumbersome!! But that doesn't > > mean that I'm not praying for the whole group each and every day!!! I'm > > convinced that all of your prayers and prayers from all over the US is what > > got me my liver in time!! > > Much love and prayers, > > Jacquelyn > > > > ------------------------------------------------------------------------ > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > http://clickhere./click/606 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > http://clickhere./click/606 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 , Has your weight stabilized? I know I'm like a Mama Hen.....but keep drinking lots of fluids...Oh well, you're in the health care field. I'm sure you know more about this than I do...I hope you hold out till your appointment, and there are lots of " feel better wishes " going out with this E-mail. WYBEAR21@... wrote: > no, I'm sorry..I didn't go to the ER. I made up my mind that if I went to > the ER, they would just call that same Dr. that I had spoken to. I'm going > to try to hold out until my appt. with my regular Dr. and then I will say > more to him at that time. I'm feeling better than I was the other night, and > haven't been running a very high temp. So maybe it was just for that day (or > is that wishful thinking? =) ) > I hope everyone else is doing great, and I will keep you posted. > Love. > > > ------------------------------------------------------------------------ > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > http://clickhere./click/606 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 Peg..Thanks for the chuckle. I had never thought of budgets as " creative " , but now maybe I'll look at it differently. I, too, wondered how they could do a living donor transplant on me, given the main bile duct is the problem. My doc said they take a part of the bile duct from the donor and reconstruct the rest of the duct from the small intestines...Probably that's how they do split liver transplants also. I'll keep you informed as I learn more. Phil & Peggy Alfeld wrote: > , > Russ sent me an article about a doctor at UCLA, they are doing quite a few split > liver transplants. I've told Phil I would give him part of my liver but he said > then who would take care of us. We have no family here and I need to work or we > won't have much of an income. I still can't imagine how they could do that anyway > because Phil's main problem is his main biliary tree. I'll have to question his > liver doctor a little further because he said they could transplant 2 PSC patients > they just split the ducts - there is only one main bile duct so I don't get it. > > Sounds like your little hiatus was nice. I used to crochet and knit and crewel and > macrame but I have problems doing any of that stuff with my bad neck. I don't do > any of that creative stuff. Just stuff on the computer. Creating something useful > gives you such a sense of accomplishment and satisfaction. > > Well I've got to go be creative now and go juggle our budget. Take care. > Peg > > mltill/dwalderich wrote: > > > , > > Thanks so much for the prayers...That same candle is burning for you (It's a > > big one in a large jar so it lasts a long time!)....I so hope that your docs > > can take care of that horrible leg problem. Two more days till the > > ERCP.... " Think very stretchy bile ducts " . > > , > > I so hope you went to the emergency room. Your symptoms sound very serious. I > > had terrible diahrrea in the hospital in July, and my postassium levels got all > > screwed up, as did my blood sugar...I had to have IV rehydration. Given your > > weight loss, I'd wonder if you weren't losing a lot of water fast...So I agree > > with others on the list. Go to the hospital, if you haven't already...and > > drink lots and lots of fluids. > > > > Peg, > > I need to stay in New England due to the insurance requirements. They've > > already authorized full payment of the transplant at New England Med. Plus, I > > really want to work with a transplant team I can trust and a GI doc who knows > > my situation as well as Dr. Lee does. It is such a dilemma...but, on Tuesday, > > maybe I can find out more about the living donor option. Thanks for your > > comments. > > > > Sorry I am so late getting back to everyone...I took a couple of days off to go > > to Maine and stay in a cottage that a friend owns. We had a great time. I > > sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. It was > > good to not think about anything related to this disease for a while...a mini > > vacation. I learned to knit socks recently, and I made a pair for a friend's > > birthday (She's babysat me many times after my ERCP procedures). Now I'm > > knitting slipper socks for a charity project that my knit group is > > doing--making afghans and slippers for all the kids in a local group home. > > This knitting stuff keeps my mind on other things than the transplant, and it > > is a great stress reducer. > > > > I keep cutting back on work, but it never seems like enough. > > Oh, well, I'm rambling. Here's hoping you all had a relatively good weekend. > > Thanks for being there. > > > > > > JQS2@... wrote: > > > > > Dear , > > > I am praying for your ERCP for August 10th!!!! Sorry I haven't been > > > online much but the circulation problems are cumbersome!! But that doesn't > > > mean that I'm not praying for the whole group each and every day!!! I'm > > > convinced that all of your prayers and prayers from all over the US is what > > > got me my liver in time!! > > > Much love and prayers, > > > Jacquelyn > > > > > > ------------------------------------------------------------------------ > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > http://clickhere./click/606 > > > > > > eGroups.com home: /group/ > > > - Simplifying group communications > > > > ------------------------------------------------------------------------ > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > http://clickhere./click/606 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > Click Here to apply for a NextCard Internet Visa and start earning > FREE travel in HALF the time with the NextCard Rew@rds Program. > http://clickhere./click/449 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 , I think that I'm still losing weight, but haven't had a chance to weigh myself. Thank goodness that I am big to start with...I have the extra weight to lose. I am taking in plenty of fluids. But, that's really about all that I'm taking in...food just seems to make me sick if I even think about it. I'm sure that I will be okay. How are you feeling? Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 , There is a guy that square dances with us. Phil, when he owned his own business gave him a job and even though he had a lot of health problems and missed work, he was a really was a hard worker so Phil stuck it out with him. Yesterday he told Phil that if he would match Phil he would gladly be a living donor. Phil was so touched. It's so nice to have someone truly appreciate it when someone helps you. His x-family is another story. They just took their money from the business when he sold it and stuck us with the bills. But I'll tell you, having one person feel that generous toward you seems to really make up for the others. We will be seeing Phil's liver doctor the 3rd of Sept and meeting with the transplant coordinator and social worker so we'll ask more questions about how it's done. I think Phil would rather stick it out a little longer with the hopes that there are more developements made. But the article that Russ sent indicated that the numbers of those in need is really growing and not the donors. Course this seems to be pushing them to figure out how to split the livers. I guess it's a real toss up in when the best timing is so I guess we have to do what Jacquelyn would say and " Give it to God for his perfect timing " . Peg mltill/dwalderich wrote: > Peg..Thanks for the chuckle. I had never thought of budgets as " creative " , but now > maybe I'll look at it differently. > I, too, wondered how they could do a living donor transplant on me, given the main bile > duct is the problem. My doc said they take a part of the bile duct from the donor and > reconstruct the rest of the duct from the small intestines...Probably that's how they > do split liver transplants also. I'll keep you informed as I learn more. > > > Phil & Peggy Alfeld wrote: > > > , > > Russ sent me an article about a doctor at UCLA, they are doing quite a few split > > liver transplants. I've told Phil I would give him part of my liver but he said > > then who would take care of us. We have no family here and I need to work or we > > won't have much of an income. I still can't imagine how they could do that anyway > > because Phil's main problem is his main biliary tree. I'll have to question his > > liver doctor a little further because he said they could transplant 2 PSC patients > > they just split the ducts - there is only one main bile duct so I don't get it. > > > > Sounds like your little hiatus was nice. I used to crochet and knit and crewel and > > macrame but I have problems doing any of that stuff with my bad neck. I don't do > > any of that creative stuff. Just stuff on the computer. Creating something useful > > gives you such a sense of accomplishment and satisfaction. > > > > Well I've got to go be creative now and go juggle our budget. Take care. > > Peg > > > > mltill/dwalderich wrote: > > > > > , > > > Thanks so much for the prayers...That same candle is burning for you (It's a > > > big one in a large jar so it lasts a long time!)....I so hope that your docs > > > can take care of that horrible leg problem. Two more days till the > > > ERCP.... " Think very stretchy bile ducts " . > > > , > > > I so hope you went to the emergency room. Your symptoms sound very serious. I > > > had terrible diahrrea in the hospital in July, and my postassium levels got all > > > screwed up, as did my blood sugar...I had to have IV rehydration. Given your > > > weight loss, I'd wonder if you weren't losing a lot of water fast...So I agree > > > with others on the list. Go to the hospital, if you haven't already...and > > > drink lots and lots of fluids. > > > > > > Peg, > > > I need to stay in New England due to the insurance requirements. They've > > > already authorized full payment of the transplant at New England Med. Plus, I > > > really want to work with a transplant team I can trust and a GI doc who knows > > > my situation as well as Dr. Lee does. It is such a dilemma...but, on Tuesday, > > > maybe I can find out more about the living donor option. Thanks for your > > > comments. > > > > > > Sorry I am so late getting back to everyone...I took a couple of days off to go > > > to Maine and stay in a cottage that a friend owns. We had a great time. I > > > sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. It was > > > good to not think about anything related to this disease for a while...a mini > > > vacation. I learned to knit socks recently, and I made a pair for a friend's > > > birthday (She's babysat me many times after my ERCP procedures). Now I'm > > > knitting slipper socks for a charity project that my knit group is > > > doing--making afghans and slippers for all the kids in a local group home. > > > This knitting stuff keeps my mind on other things than the transplant, and it > > > is a great stress reducer. > > > > > > I keep cutting back on work, but it never seems like enough. > > > Oh, well, I'm rambling. Here's hoping you all had a relatively good weekend. > > > Thanks for being there. > > > > > > > > > JQS2@... wrote: > > > > > > > Dear , > > > > I am praying for your ERCP for August 10th!!!! Sorry I haven't been > > > > online much but the circulation problems are cumbersome!! But that doesn't > > > > mean that I'm not praying for the whole group each and every day!!! I'm > > > > convinced that all of your prayers and prayers from all over the US is what > > > > got me my liver in time!! > > > > Much love and prayers, > > > > Jacquelyn > > > > > > > > ------------------------------------------------------------------------ > > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > > http://clickhere./click/606 > > > > > > > > eGroups.com home: /group/ > > > > - Simplifying group communications > > > > > > ------------------------------------------------------------------------ > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > http://clickhere./click/606 > > > > > > eGroups.com home: /group/ > > > - Simplifying group communications > > > > ------------------------------------------------------------------------ > > Click Here to apply for a NextCard Internet Visa and start earning > > FREE travel in HALF the time with the NextCard Rew@rds Program. > > http://clickhere./click/449 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > http://clickhere./click/606 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 Peg, It is so great that you have someone willing to look into being a donor. It gives Phil options. Good luck when you talk to the docs. We'll just keep each other informed---this is so new that it helps to gather whatever info we can. Peggy Alfeld wrote: > , > There is a guy that square dances with us. Phil, when he owned his own business gave him a > job and even though he had a lot of health problems and missed work, he was a really was a > hard worker so Phil stuck it out with him. Yesterday he told Phil that if he would match > Phil he would gladly be a living donor. Phil was so touched. It's so nice to have someone > truly appreciate it when someone helps you. His x-family is another story. They just took > their money from the business when he sold it and stuck us with the bills. But I'll tell > you, having one person feel that generous toward you seems to really make up for the > others. We will be seeing Phil's liver doctor the 3rd of Sept and meeting with the > transplant coordinator and social worker so we'll ask more questions about how it's done. > I think Phil would rather stick it out a little longer with the hopes that there are more > developements made. But the article that Russ sent indicated that the numbers of those in > need is really growing and not the donors. Course this seems to be pushing them to figure > out how to split the livers. I guess it's a real toss up in when the best timing is so I > guess we have to do what Jacquelyn would say and " Give it to God for his perfect timing " . > Peg > > mltill/dwalderich wrote: > > > Peg..Thanks for the chuckle. I had never thought of budgets as " creative " , but now > > maybe I'll look at it differently. > > I, too, wondered how they could do a living donor transplant on me, given the main bile > > duct is the problem. My doc said they take a part of the bile duct from the donor and > > reconstruct the rest of the duct from the small intestines...Probably that's how they > > do split liver transplants also. I'll keep you informed as I learn more. > > > > > > Phil & Peggy Alfeld wrote: > > > > > , > > > Russ sent me an article about a doctor at UCLA, they are doing quite a few split > > > liver transplants. I've told Phil I would give him part of my liver but he said > > > then who would take care of us. We have no family here and I need to work or we > > > won't have much of an income. I still can't imagine how they could do that anyway > > > because Phil's main problem is his main biliary tree. I'll have to question his > > > liver doctor a little further because he said they could transplant 2 PSC patients > > > they just split the ducts - there is only one main bile duct so I don't get it. > > > > > > Sounds like your little hiatus was nice. I used to crochet and knit and crewel and > > > macrame but I have problems doing any of that stuff with my bad neck. I don't do > > > any of that creative stuff. Just stuff on the computer. Creating something useful > > > gives you such a sense of accomplishment and satisfaction. > > > > > > Well I've got to go be creative now and go juggle our budget. Take care. > > > Peg > > > > > > mltill/dwalderich wrote: > > > > > > > , > > > > Thanks so much for the prayers...That same candle is burning for you (It's a > > > > big one in a large jar so it lasts a long time!)....I so hope that your docs > > > > can take care of that horrible leg problem. Two more days till the > > > > ERCP.... " Think very stretchy bile ducts " . > > > > , > > > > I so hope you went to the emergency room. Your symptoms sound very serious. I > > > > had terrible diahrrea in the hospital in July, and my postassium levels got all > > > > screwed up, as did my blood sugar...I had to have IV rehydration. Given your > > > > weight loss, I'd wonder if you weren't losing a lot of water fast...So I agree > > > > with others on the list. Go to the hospital, if you haven't already...and > > > > drink lots and lots of fluids. > > > > > > > > Peg, > > > > I need to stay in New England due to the insurance requirements. They've > > > > already authorized full payment of the transplant at New England Med. Plus, I > > > > really want to work with a transplant team I can trust and a GI doc who knows > > > > my situation as well as Dr. Lee does. It is such a dilemma...but, on Tuesday, > > > > maybe I can find out more about the living donor option. Thanks for your > > > > comments. > > > > > > > > Sorry I am so late getting back to everyone...I took a couple of days off to go > > > > to Maine and stay in a cottage that a friend owns. We had a great time. I > > > > sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. It was > > > > good to not think about anything related to this disease for a while...a mini > > > > vacation. I learned to knit socks recently, and I made a pair for a friend's > > > > birthday (She's babysat me many times after my ERCP procedures). Now I'm > > > > knitting slipper socks for a charity project that my knit group is > > > > doing--making afghans and slippers for all the kids in a local group home. > > > > This knitting stuff keeps my mind on other things than the transplant, and it > > > > is a great stress reducer. > > > > > > > > I keep cutting back on work, but it never seems like enough. > > > > Oh, well, I'm rambling. Here's hoping you all had a relatively good weekend. > > > > Thanks for being there. > > > > > > > > > > > > JQS2@... wrote: > > > > > > > > > Dear , > > > > > I am praying for your ERCP for August 10th!!!! Sorry I haven't been > > > > > online much but the circulation problems are cumbersome!! But that doesn't > > > > > mean that I'm not praying for the whole group each and every day!!! I'm > > > > > convinced that all of your prayers and prayers from all over the US is what > > > > > got me my liver in time!! > > > > > Much love and prayers, > > > > > Jacquelyn > > > > > > > > > > ------------------------------------------------------------------------ > > > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > > > http://clickhere./click/606 > > > > > > > > > > eGroups.com home: /group/ > > > > > - Simplifying group communications > > > > > > > > ------------------------------------------------------------------------ > > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > > http://clickhere./click/606 > > > > > > > > eGroups.com home: /group/ > > > > - Simplifying group communications > > > > > > ------------------------------------------------------------------------ > > > Click Here to apply for a NextCard Internet Visa and start earning > > > FREE travel in HALF the time with the NextCard Rew@rds Program. > > > http://clickhere./click/449 > > > > > > eGroups.com home: /group/ > > > - Simplifying group communications > > > > ------------------------------------------------------------------------ > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > http://clickhere./click/606 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > Click Here to apply for a NextCard Internet Visa and start earning > FREE travel in HALF the time with the NextCard Rew@rds Program. > http://clickhere./click/449 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 Hi, , I'm really sorry you're having so much trouble. I hope you find out what's going on soon. I had a slight temp. last night (Sun), but it resolved after I took my regular evening dose of antibiotics. Today I worked a long day and felt good. Tomorrow is the ERCP, so I'll know more after that. I probably will be off-line for a couple of days, but will catch up with you after I get out of " drug la-la land " .... Good luck, and take care of yourself. WYBEAR21@... wrote: > , > I think that I'm still losing weight, but haven't had a chance to weigh > myself. Thank goodness that I am big to start with...I have the extra weight > to lose. I am taking in plenty of fluids. But, that's really about all that > I'm taking in...food just seems to make me sick if I even think about it. > I'm sure that I will be okay. How are you feeling? > Love, > > > ------------------------------------------------------------------------ > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > http://clickhere./click/606 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1999 Report Share Posted August 10, 1999 , I'm actually doing okay right now, when I weighed myself yesterday, I had lost another 2 pounds, but that was in the space of an entire weekend..so that isn't too bad. I don't mind the weight loss, but..I think I'm losing it too quickly. And, all of my clothes make me look like a clown now. LOL! I will be praying for you! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1999 Report Share Posted August 10, 1999 , I doubt that we would take him up on it. The living donor thing seems much to new and experimental. Plus what if our friend had complications or something worse, we'd never forgive ourselves. It's just overwhelming that someone would care that much. We have been butting up with some really awful people in Phil's past life (at least we are trying to put them in the past but they keep popping up) and to have someone be so generous and care that much, well it sure helps us realize that there are a lot of good people out there to. Good luck on your ERCP, you've had it by now and I hope it went without a hitch. Phil had only one and it was a nightmare, he ended up in the hospital for 10 days and was a very sick puppy. Just the dye going into his constricted ducts sent him through the roof. If they do one again they will have to put him totally out. Peg mltill/dwalderich wrote: > Peg, It is so great that you have someone willing to look into being a donor. It gives Phil > options. Good luck when you talk to the docs. We'll just keep each other informed---this is > so new that it helps to gather whatever info we can. > > > Peggy Alfeld wrote: > > > , > > There is a guy that square dances with us. Phil, when he owned his own business gave him a > > job and even though he had a lot of health problems and missed work, he was a really was a > > hard worker so Phil stuck it out with him. Yesterday he told Phil that if he would match > > Phil he would gladly be a living donor. Phil was so touched. It's so nice to have someone > > truly appreciate it when someone helps you. His x-family is another story. They just took > > their money from the business when he sold it and stuck us with the bills. But I'll tell > > you, having one person feel that generous toward you seems to really make up for the > > others. We will be seeing Phil's liver doctor the 3rd of Sept and meeting with the > > transplant coordinator and social worker so we'll ask more questions about how it's done. > > I think Phil would rather stick it out a little longer with the hopes that there are more > > developements made. But the article that Russ sent indicated that the numbers of those in > > need is really growing and not the donors. Course this seems to be pushing them to figure > > out how to split the livers. I guess it's a real toss up in when the best timing is so I > > guess we have to do what Jacquelyn would say and " Give it to God for his perfect timing " . > > Peg > > > > mltill/dwalderich wrote: > > > > > Peg..Thanks for the chuckle. I had never thought of budgets as " creative " , but now > > > maybe I'll look at it differently. > > > I, too, wondered how they could do a living donor transplant on me, given the main bile > > > duct is the problem. My doc said they take a part of the bile duct from the donor and > > > reconstruct the rest of the duct from the small intestines...Probably that's how they > > > do split liver transplants also. I'll keep you informed as I learn more. > > > > > > > > > Phil & Peggy Alfeld wrote: > > > > > > > , > > > > Russ sent me an article about a doctor at UCLA, they are doing quite a few split > > > > liver transplants. I've told Phil I would give him part of my liver but he said > > > > then who would take care of us. We have no family here and I need to work or we > > > > won't have much of an income. I still can't imagine how they could do that anyway > > > > because Phil's main problem is his main biliary tree. I'll have to question his > > > > liver doctor a little further because he said they could transplant 2 PSC patients > > > > they just split the ducts - there is only one main bile duct so I don't get it. > > > > > > > > Sounds like your little hiatus was nice. I used to crochet and knit and crewel and > > > > macrame but I have problems doing any of that stuff with my bad neck. I don't do > > > > any of that creative stuff. Just stuff on the computer. Creating something useful > > > > gives you such a sense of accomplishment and satisfaction. > > > > > > > > Well I've got to go be creative now and go juggle our budget. Take care. > > > > Peg > > > > > > > > mltill/dwalderich wrote: > > > > > > > > > , > > > > > Thanks so much for the prayers...That same candle is burning for you (It's a > > > > > big one in a large jar so it lasts a long time!)....I so hope that your docs > > > > > can take care of that horrible leg problem. Two more days till the > > > > > ERCP.... " Think very stretchy bile ducts " . > > > > > , > > > > > I so hope you went to the emergency room. Your symptoms sound very serious. I > > > > > had terrible diahrrea in the hospital in July, and my postassium levels got all > > > > > screwed up, as did my blood sugar...I had to have IV rehydration. Given your > > > > > weight loss, I'd wonder if you weren't losing a lot of water fast...So I agree > > > > > with others on the list. Go to the hospital, if you haven't already...and > > > > > drink lots and lots of fluids. > > > > > > > > > > Peg, > > > > > I need to stay in New England due to the insurance requirements. They've > > > > > already authorized full payment of the transplant at New England Med. Plus, I > > > > > really want to work with a transplant team I can trust and a GI doc who knows > > > > > my situation as well as Dr. Lee does. It is such a dilemma...but, on Tuesday, > > > > > maybe I can find out more about the living donor option. Thanks for your > > > > > comments. > > > > > > > > > > Sorry I am so late getting back to everyone...I took a couple of days off to go > > > > > to Maine and stay in a cottage that a friend owns. We had a great time. I > > > > > sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. It was > > > > > good to not think about anything related to this disease for a while...a mini > > > > > vacation. I learned to knit socks recently, and I made a pair for a friend's > > > > > birthday (She's babysat me many times after my ERCP procedures). Now I'm > > > > > knitting slipper socks for a charity project that my knit group is > > > > > doing--making afghans and slippers for all the kids in a local group home. > > > > > This knitting stuff keeps my mind on other things than the transplant, and it > > > > > is a great stress reducer. > > > > > > > > > > I keep cutting back on work, but it never seems like enough. > > > > > Oh, well, I'm rambling. Here's hoping you all had a relatively good weekend. > > > > > Thanks for being there. > > > > > > > > > > > > > > > JQS2@... wrote: > > > > > > > > > > > Dear , > > > > > > I am praying for your ERCP for August 10th!!!! Sorry I haven't been > > > > > > online much but the circulation problems are cumbersome!! But that doesn't > > > > > > mean that I'm not praying for the whole group each and every day!!! I'm > > > > > > convinced that all of your prayers and prayers from all over the US is what > > > > > > got me my liver in time!! > > > > > > Much love and prayers, > > > > > > Jacquelyn > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > > > > http://clickhere./click/606 > > > > > > > > > > > > eGroups.com home: /group/ > > > > > > - Simplifying group communications > > > > > > > > > > ------------------------------------------------------------------------ > > > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > > > http://clickhere./click/606 > > > > > > > > > > eGroups.com home: /group/ > > > > > - Simplifying group communications > > > > > > > > ------------------------------------------------------------------------ > > > > Click Here to apply for a NextCard Internet Visa and start earning > > > > FREE travel in HALF the time with the NextCard Rew@rds Program. > > > > http://clickhere./click/449 > > > > > > > > eGroups.com home: /group/ > > > > - Simplifying group communications > > > > > > ------------------------------------------------------------------------ > > > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > > > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > > > http://clickhere./click/606 > > > > > > eGroups.com home: /group/ > > > - Simplifying group communications > > > > ------------------------------------------------------------------------ > > Click Here to apply for a NextCard Internet Visa and start earning > > FREE travel in HALF the time with the NextCard Rew@rds Program. > > http://clickhere./click/449 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > ebates.com. Earn up to 25% cash back for shopping online at 75 stores > like Borders, CDNow and Beyond.com. Refer a friend and earn even more! > http://clickhere./click/690 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1999 Report Share Posted August 10, 1999 Hi! I mentioned the split transplants several months ago -- a brother and sister. He gave her 3/4 of his liver and in 3 weeks they both had brand-new livers. After I wrote about this someone e-mailed back and said it wouldn't do us any good because we needed the bile-duct system or something like that. Has that changed? It would be wonderful for all of you if it has changed. As I said in one of my recent e-mails, I don't believe I would take a liver if I were offered it if one of these precious children on our site could use it. I really means this. I am 56-years-old and these guys are 2-1/2, 6 and 9. They need to live so very much!! Take care. Hugs, Biddy Re: Living Donors >, >Russ sent me an article about a doctor at UCLA, they are doing quite a few split >liver transplants. I've told Phil I would give him part of my liver but he said >then who would take care of us. We have no family here and I need to work or we >won't have much of an income. I still can't imagine how they could do that anyway >because Phil's main problem is his main biliary tree. I'll have to question his >liver doctor a little further because he said they could transplant 2 PSC patients >they just split the ducts - there is only one main bile duct so I don't get it. > >Sounds like your little hiatus was nice. I used to crochet and knit and crewel and >macrame but I have problems doing any of that stuff with my bad neck. I don't do >any of that creative stuff. Just stuff on the computer. Creating something useful >gives you such a sense of accomplishment and satisfaction. > >Well I've got to go be creative now and go juggle our budget. Take care. >Peg > >mltill/dwalderich wrote: > >> , >> Thanks so much for the prayers...That same candle is burning for you (It's a >> big one in a large jar so it lasts a long time!)....I so hope that your docs >> can take care of that horrible leg problem. Two more days till the >> ERCP.... " Think very stretchy bile ducts " . >> , >> I so hope you went to the emergency room. Your symptoms sound very serious. I >> had terrible diahrrea in the hospital in July, and my postassium levels got all >> screwed up, as did my blood sugar...I had to have IV rehydration. Given your >> weight loss, I'd wonder if you weren't losing a lot of water fast...So I agree >> with others on the list. Go to the hospital, if you haven't already...and >> drink lots and lots of fluids. >> >> Peg, >> I need to stay in New England due to the insurance requirements. They've >> already authorized full payment of the transplant at New England Med. Plus, I >> really want to work with a transplant team I can trust and a GI doc who knows >> my situation as well as Dr. Lee does. It is such a dilemma...but, on Tuesday, >> maybe I can find out more about the living donor option. Thanks for your >> comments. >> >> Sorry I am so late getting back to everyone...I took a couple of days off to go >> to Maine and stay in a cottage that a friend owns. We had a great time. I >> sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. It was >> good to not think about anything related to this disease for a while...a mini >> vacation. I learned to knit socks recently, and I made a pair for a friend's >> birthday (She's babysat me many times after my ERCP procedures). Now I'm >> knitting slipper socks for a charity project that my knit group is >> doing--making afghans and slippers for all the kids in a local group home. >> This knitting stuff keeps my mind on other things than the transplant, and it >> is a great stress reducer. >> >> I keep cutting back on work, but it never seems like enough. >> Oh, well, I'm rambling. Here's hoping you all had a relatively good weekend. >> Thanks for being there. >> >> >> JQS2@... wrote: >> >> > Dear , >> > I am praying for your ERCP for August 10th!!!! Sorry I haven't been >> > online much but the circulation problems are cumbersome!! But that doesn't >> > mean that I'm not praying for the whole group each and every day!!! I'm >> > convinced that all of your prayers and prayers from all over the US is what >> > got me my liver in time!! >> > Much love and prayers, >> > Jacquelyn >> > >> > ------------------------------------------------------------------------ >> > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, >> > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! >> > http://clickhere./click/606 >> > >> > eGroups.com home: /group/ >> > - Simplifying group communications >> >> ------------------------------------------------------------------------ >> GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, >> NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! >> http://clickhere./click/606 >> >> eGroups.com home: /group/ >> - Simplifying group communications > > >------------------------------------------------------------------------ >Click Here to apply for a NextCard Internet Visa and start earning >FREE travel in HALF the time with the NextCard Rew@rds Program. >http://clickhere./click/449 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Biddy, I truly appreciate your willingness to pass on a tx, but like Roy, I don't believe you would be taking away from any children. Bless you, you are a sweetheart! I wish you the best and pray that you will get some relief from your pain. Roy, I'm finding this support group very educational. I kinda thought that that was the case but wasn't sure. My son, , age 9, said the other day " I hope that I can get my liver from dad or mom. I don't want anyone else to die. " That was heartbreaking. So it is very comforting that a living donor may be an option - and also comforting that a cadavaric donor could even provide two people with new livers. Jodi Reply-To: egroups To: <egroups> Subject: Re: Living Donors Date: Wed, 11 Aug 1999 08:38:02 -0400 I believe that PSC patients can get transplants from living donors, although the entire technology is still relatively new in the USA. Regarding whether to accept a liver, I suppose one might decline in order to save someone else on the list. However it probably would not be a child that would get the declined liver, since size has to match. What they are doing much more often now is dividing a caderic liver into two segments and giving the larger piece to an adult and the smaller piece to a child. This way 2 patients can be treated with one liver. Roy T. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 I believe that PSC patients can get transplants from living donors, although the entire technology is still relatively new in the USA. Regarding whether to accept a liver, I suppose one might decline in order to save someone else on the list. However it probably would not be a child that would get the declined liver, since size has to match. What they are doing much more often now is dividing a caderic liver into two segments and giving the larger piece to an adult and the smaller piece to a child. This way 2 patients can be treated with one liver. Roy T. Re: Living Donors > > > >, > >Russ sent me an article about a doctor at UCLA, they are doing quite a few > split > >liver transplants. I've told Phil I would give him part of my liver but he > said > >then who would take care of us. We have no family here and I need to work > or we > >won't have much of an income. I still can't imagine how they could do that > anyway > >because Phil's main problem is his main biliary tree. I'll have to > question his > >liver doctor a little further because he said they could transplant 2 PSC > patients > >they just split the ducts - there is only one main bile duct so I don't get > it. > > > >Sounds like your little hiatus was nice. I used to crochet and knit and > crewel and > >macrame but I have problems doing any of that stuff with my bad neck. I > don't do > >any of that creative stuff. Just stuff on the computer. Creating something > useful > >gives you such a sense of accomplishment and satisfaction. > > > >Well I've got to go be creative now and go juggle our budget. Take care. > >Peg > > > >mltill/dwalderich wrote: > > > >> , > >> Thanks so much for the prayers...That same candle is burning for you > (It's a > >> big one in a large jar so it lasts a long time!)....I so hope that your > docs > >> can take care of that horrible leg problem. Two more days till the > >> ERCP.... " Think very stretchy bile ducts " . > >> , > >> I so hope you went to the emergency room. Your symptoms sound very > serious. I > >> had terrible diahrrea in the hospital in July, and my postassium levels > got all > >> screwed up, as did my blood sugar...I had to have IV rehydration. Given > your > >> weight loss, I'd wonder if you weren't losing a lot of water fast...So I > agree > >> with others on the list. Go to the hospital, if you haven't > already...and > >> drink lots and lots of fluids. > >> > >> Peg, > >> I need to stay in New England due to the insurance requirements. They've > >> already authorized full payment of the transplant at New England Med. > Plus, I > >> really want to work with a transplant team I can trust and a GI doc who > knows > >> my situation as well as Dr. Lee does. It is such a dilemma...but, on > Tuesday, > >> maybe I can find out more about the living donor option. Thanks for your > >> comments. > >> > >> Sorry I am so late getting back to everyone...I took a couple of days off > to go > >> to Maine and stay in a cottage that a friend owns. We had a great time. > I > >> sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. > It was > >> good to not think about anything related to this disease for a while...a > mini > >> vacation. I learned to knit socks recently, and I made a pair for a > friend's > >> birthday (She's babysat me many times after my ERCP procedures). Now > I'm > >> knitting slipper socks for a charity project that my knit group is > >> doing--making afghans and slippers for all the kids in a local group > home. > >> This knitting stuff keeps my mind on other things than the transplant, > and it > >> is a great stress reducer. > >> > >> I keep cutting back on work, but it never seems like enough. > >> Oh, well, I'm rambling. Here's hoping you all had a relatively good > weekend. > >> Thanks for being there. > >> > >> > >> JQS2@... wrote: > >> > >> > Dear , > >> > I am praying for your ERCP for August 10th!!!! Sorry I haven't been > >> > online much but the circulation problems are cumbersome!! But that > doesn't > >> > mean that I'm not praying for the whole group each and every day!!! I'm > >> > convinced that all of your prayers and prayers from all over the US is > what > >> > got me my liver in time!! > >> > Much love and prayers, > >> > Jacquelyn > >> > > >> > > ------------------------------------------------------------------------ > >> > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > >> > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > >> > http://clickhere./click/606 > >> > > >> > eGroups.com home: /group/ > >> > - Simplifying group communications > >> > >> ------------------------------------------------------------------------ > >> GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > >> NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > >> http://clickhere./click/606 > >> > >> eGroups.com home: /group/ > >> - Simplifying group communications > > > > > >------------------------------------------------------------------------ > >Click Here to apply for a NextCard Internet Visa and start earning > >FREE travel in HALF the time with the NextCard Rew@rds Program. > >http://clickhere./click/449 > > > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > > > ------------------------------------------------------------------------ > ebates.com. Earn up to 25% cash back for shopping online at 75 stores > like Borders, CDNow and Beyond.com. Refer a friend and earn even more! > http://clickhere./click/690 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Marcy, This is my suggestion. Have your daughter get a physical, with routine blood work (a complete blood work up) once a year. This should show you if anything is going on. I know that researchers are not sure if it is hereditary or not, and I'm truly hoping it isn't...but... my paternal grandmother, and her father (my paternal great grandfather), both died of liver cancer. They now think that they had this disease. The friend of Jacquelyn's that passed away after his liver transplant (he had PSC), has a son that was diagnosed with PSC. I think there is some indication that it COULD be hereditary, but just depends on the case. I'm so so sorry if I discouraged anyone. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Jodi, Isn't is completely baffling when our children say these things?? I am always amazed at the depth of wisdom and charactor these children have. My has also told me he wouldn't want me to be hurt and in pain and therefore would really have to " think twice " before allowing me to give part of my liver to him. He dad is not an option as he has not seen him in 5 years. When I divorced and took the kids their father swore he would never have anything to do with them again and he hasn't. The one time I attempted to contact him with the news that his son was so ill he told me he didn't care as long as he didn't get the bil. Good riddance to trash. I have a question (or 2)for everyone. First Should I have 's sister tested for PSC?? I am not sure if it " runs " in families or not. and second wants to play football this fall and the doctor said he is ok for all sports " for now " . Should I let him or not?? I am afraid to let him do to the damage that could be done if he was to be hit really hard. Thanks and Hugs Marcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Thanks Roy, If this Tx would take place given by a living donor, would it still be giving the adult one part and the child another and the donor will also live? What was it I read about how difficult it would be for us to get a Tx from a live donor because of the extensive bile work involved. Is this true? I keep hearing that PSCers and PBCers are not going to be eligible for a Tx because of our disease. I have been told that since they don't know what happened to our livers, they are afraid to waste a new liver, transplant it inside of us and then the same thing would more than likely happen to our new liver. Thank you for caring, Hugs, Biddy Re: Living Donors >I believe that PSC patients can get transplants from living donors, although >the entire technology is still relatively new in the USA. > >Regarding whether to accept a liver, I suppose one might decline in order to >save someone else on the list. However it probably would not be a child >that would get the declined liver, since size has to match. > >What they are doing much more often now is dividing a caderic liver into two >segments and giving the larger piece to an adult and the smaller piece to a >child. This way 2 patients can be treated with one liver. > >Roy T. > > > Re: Living Donors >> >> >> >, >> >Russ sent me an article about a doctor at UCLA, they are doing quite a >few >> split >> >liver transplants. I've told Phil I would give him part of my liver but >he >> said >> >then who would take care of us. We have no family here and I need to >work >> or we >> >won't have much of an income. I still can't imagine how they could do >that >> anyway >> >because Phil's main problem is his main biliary tree. I'll have to >> question his >> >liver doctor a little further because he said they could transplant 2 PSC >> patients >> >they just split the ducts - there is only one main bile duct so I don't >get >> it. >> > >> >Sounds like your little hiatus was nice. I used to crochet and knit and >> crewel and >> >macrame but I have problems doing any of that stuff with my bad neck. I >> don't do >> >any of that creative stuff. Just stuff on the computer. Creating >something >> useful >> >gives you such a sense of accomplishment and satisfaction. >> > >> >Well I've got to go be creative now and go juggle our budget. Take care. >> >Peg >> > >> >mltill/dwalderich wrote: >> > >> >> , >> >> Thanks so much for the prayers...That same candle is burning for you >> (It's a >> >> big one in a large jar so it lasts a long time!)....I so hope that your >> docs >> >> can take care of that horrible leg problem. Two more days till the >> >> ERCP.... " Think very stretchy bile ducts " . >> >> , >> >> I so hope you went to the emergency room. Your symptoms sound very >> serious. I >> >> had terrible diahrrea in the hospital in July, and my postassium levels >> got all >> >> screwed up, as did my blood sugar...I had to have IV rehydration. >Given >> your >> >> weight loss, I'd wonder if you weren't losing a lot of water fast...So >I >> agree >> >> with others on the list. Go to the hospital, if you haven't >> already...and >> >> drink lots and lots of fluids. >> >> >> >> Peg, >> >> I need to stay in New England due to the insurance requirements. >They've >> >> already authorized full payment of the transplant at New England Med. >> Plus, I >> >> really want to work with a transplant team I can trust and a GI doc who >> knows >> >> my situation as well as Dr. Lee does. It is such a dilemma...but, on >> Tuesday, >> >> maybe I can find out more about the living donor option. Thanks for >your >> >> comments. >> >> >> >> Sorry I am so late getting back to everyone...I took a couple of days >off >> to go >> >> to Maine and stay in a cottage that a friend owns. We had a great >time. >> I >> >> sat, relaxed, knitted, and gazed at a magnificent field of wildflowers. >> It was >> >> good to not think about anything related to this disease for a >while...a >> mini >> >> vacation. I learned to knit socks recently, and I made a pair for a >> friend's >> >> birthday (She's babysat me many times after my ERCP procedures). Now >> I'm >> >> knitting slipper socks for a charity project that my knit group is >> >> doing--making afghans and slippers for all the kids in a local group >> home. >> >> This knitting stuff keeps my mind on other things than the transplant, >> and it >> >> is a great stress reducer. >> >> >> >> I keep cutting back on work, but it never seems like enough. >> >> Oh, well, I'm rambling. Here's hoping you all had a relatively good >> weekend. >> >> Thanks for being there. >> >> >> >> >> >> JQS2@... wrote: >> >> >> >> > Dear , >> >> > I am praying for your ERCP for August 10th!!!! Sorry I haven't >been >> >> > online much but the circulation problems are cumbersome!! But that >> doesn't >> >> > mean that I'm not praying for the whole group each and every day!!! >I'm >> >> > convinced that all of your prayers and prayers from all over the US >is >> what >> >> > got me my liver in time!! >> >> > Much love and prayers, >> >> > Jacquelyn >> >> > >> >> >> > ------------------------------------------------------------------------ >> >> > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards >points, >> >> > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! >> >> > http://clickhere./click/606 >> >> > >> >> > eGroups.com home: /group/ >> >> > - Simplifying group communications >> >> >> >>> ------------------------------------------------------------------------ >> >> GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, >> >> NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! >> >> http://clickhere./click/606 >> >> >> >> eGroups.com home: /group/ >> >> - Simplifying group communications >> > >> > >> >------------------------------------------------------------------------ >> >Click Here to apply for a NextCard Internet Visa and start earning >> >FREE travel in HALF the time with the NextCard Rew@rds Program. >> >http://clickhere./click/449 >> > >> > >> >eGroups.com home: /group/ >> > - Simplifying group communications >> > >> > >> > >> > >> > >> >> >> ------------------------------------------------------------------------ >> ebates.com. Earn up to 25% cash back for shopping online at 75 stores >> like Borders, CDNow and Beyond.com. Refer a friend and earn even more! >> http://clickhere./click/690 >> >> >> eGroups.com home: /group/ >> - Simplifying group communications >> >> >> >> >> > > >------------------------------------------------------------------------ >ebates.com. Earn up to 25% cash back for shopping online at 75 stores >like Borders, CDNow and Beyond.com. Refer a friend and earn even more! >http://clickhere./click/690 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 1999 Report Share Posted August 12, 1999 Biddy, According to my doc, Dr. Lee at New England Med, the extensive bile work involved is the same for transplant for a cadavorous liver tx and a living donor tx. NEMC and Mayo do the most tx's on PSC'ers, and the diagnosis doesn't make a difference, apparently, about whether one pt. gets the liver over another...What does make the difference is the status on the waiting list. I don't know where you heard they were afraid to waste a liver on a PSC patient...I don't think that's true at all. At New England Med, every psc pt. called in for a transplant has a backup on the wait list on call because if we have developed cancer and it is spread outside of the liver, then the transplant would not help...there wouldn't be much hope. I think our risk of cancer may be the only mitigating factor. I hope this info helps. I got this info Tuesday when I met with my doc in clinic. Biddy Santon wrote: > Thanks Roy, > If this Tx would take place given by a living donor, would it still be > giving the adult one part and the child another and the donor will also > live? What was it I read about how difficult it would be for us to get a Tx > from a live donor because of the extensive bile work involved. Is this true? > I keep hearing that PSCers and PBCers are not going to be eligible for a > Tx because of our disease. I have been told that since they don't know what > happened to our livers, they are afraid to waste a new liver, transplant it > inside of us and then the same thing would more than likely happen to our > new liver. > Thank you for caring, > Hugs, > Biddy > Re: Living Donors > > >I believe that PSC patients can get transplants from living donors, > although > >the entire technology is still relatively new in the USA. > > > >Regarding whether to accept a liver, I suppose one might decline in order > to > >save someone else on the list. However it probably would not be a child > >that would get the declined liver, since size has to match. > > > >What they are doing much more often now is dividing a caderic liver into > two > >segments and giving the larger piece to an adult and the smaller piece to a > >child. This way 2 patients can be treated with one liver. > > > >Roy T. > > > > > > Re: Living Donors > >> > >> > >> >, > >> >Russ sent me an article about a doctor at UCLA, they are doing quite a > >few > >> split > >> >liver transplants. I've told Phil I would give him part of my liver but > >he > >> said > >> >then who would take care of us. We have no family here and I need to > >work > >> or we > >> >won't have much of an income. I still can't imagine how they could do > >that > >> anyway > >> >because Phil's main problem is his main biliary tree. I'll have to > >> question his > >> >liver doctor a little further because he said they could transplant 2 > PSC > >> patients > >> >they just split the ducts - there is only one main bile duct so I don't > >get > >> it. > >> > > >> >Sounds like your little hiatus was nice. I used to crochet and knit and > >> crewel and > >> >macrame but I have problems doing any of that stuff with my bad neck. I > >> don't do > >> >any of that creative stuff. Just stuff on the computer. Creating > >something > >> useful > >> >gives you such a sense of accomplishment and satisfaction. > >> > > >> >Well I've got to go be creative now and go juggle our budget. Take > care. > >> >Peg > >> > > >> >mltill/dwalderich wrote: > >> > > >> >> , > >> >> Thanks so much for the prayers...That same candle is burning for you > >> (It's a > >> >> big one in a large jar so it lasts a long time!)....I so hope that > your > >> docs > >> >> can take care of that horrible leg problem. Two more days till the > >> >> ERCP.... " Think very stretchy bile ducts " . > >> >> , > >> >> I so hope you went to the emergency room. Your symptoms sound very > >> serious. I > >> >> had terrible diahrrea in the hospital in July, and my postassium > levels > >> got all > >> >> screwed up, as did my blood sugar...I had to have IV rehydration. > >Given > >> your > >> >> weight loss, I'd wonder if you weren't losing a lot of water fast...So > >I > >> agree > >> >> with others on the list. Go to the hospital, if you haven't > >> already...and > >> >> drink lots and lots of fluids. > >> >> > >> >> Peg, > >> >> I need to stay in New England due to the insurance requirements. > >They've > >> >> already authorized full payment of the transplant at New England Med. > >> Plus, I > >> >> really want to work with a transplant team I can trust and a GI doc > who > >> knows > >> >> my situation as well as Dr. Lee does. It is such a dilemma...but, on > >> Tuesday, > >> >> maybe I can find out more about the living donor option. Thanks for > >your > >> >> comments. > >> >> > >> >> Sorry I am so late getting back to everyone...I took a couple of days > >off > >> to go > >> >> to Maine and stay in a cottage that a friend owns. We had a great > >time. > >> I > >> >> sat, relaxed, knitted, and gazed at a magnificent field of > wildflowers. > >> It was > >> >> good to not think about anything related to this disease for a > >while...a > >> mini > >> >> vacation. I learned to knit socks recently, and I made a pair for a > >> friend's > >> >> birthday (She's babysat me many times after my ERCP procedures). Now > >> I'm > >> >> knitting slipper socks for a charity project that my knit group is > >> >> doing--making afghans and slippers for all the kids in a local group > >> home. > >> >> This knitting stuff keeps my mind on other things than the transplant, > >> and it > >> >> is a great stress reducer. > >> >> > >> >> I keep cutting back on work, but it never seems like enough. > >> >> Oh, well, I'm rambling. Here's hoping you all had a relatively good > >> weekend. > >> >> Thanks for being there. > >> >> > >> >> > >> >> JQS2@... wrote: > >> >> > >> >> > Dear , > >> >> > I am praying for your ERCP for August 10th!!!! Sorry I haven't > >been > >> >> > online much but the circulation problems are cumbersome!! But that > >> doesn't > >> >> > mean that I'm not praying for the whole group each and every day!!! > >I'm > >> >> > convinced that all of your prayers and prayers from all over the US > >is > >> what > >> >> > got me my liver in time!! > >> >> > Much love and prayers, > >> >> > Jacquelyn > >> >> > > >> >> > >> > > ------------------------------------------------------------------------ > >> >> > GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards > >points, > >> >> > NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > >> >> > http://clickhere./click/606 > >> >> > > >> >> > eGroups.com home: /group/ > >> >> > - Simplifying group communications > >> >> > >> > >>> ------------------------------------------------------------------------ > >> >> GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, > >> >> NO annual fee & rates as low as 9.9% FIXED APR. Apply online today! > >> >> http://clickhere./click/606 > >> >> > >> >> eGroups.com home: /group/ > >> >> - Simplifying group communications > >> > > >> > > >> >------------------------------------------------------------------------ > >> >Click Here to apply for a NextCard Internet Visa and start earning > >> >FREE travel in HALF the time with the NextCard Rew@rds Program. > >> >http://clickhere./click/449 > >> > > >> > > >> >eGroups.com home: /group/ > >> > - Simplifying group communications > >> > > >> > > >> > > >> > > >> > > >> > >> > >> ------------------------------------------------------------------------ > >> ebates.com. Earn up to 25% cash back for shopping online at 75 stores > >> like Borders, CDNow and Beyond.com. Refer a friend and earn even more! > >> http://clickhere./click/690 > >> > >> > >> eGroups.com home: /group/ > >> - Simplifying group communications > >> > >> > >> > >> > >> > > > > > >------------------------------------------------------------------------ > >ebates.com. Earn up to 25% cash back for shopping online at 75 stores > >like Borders, CDNow and Beyond.com. Refer a friend and earn even more! > >http://clickhere./click/690 > > > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > > ------------------------------------------------------------------------ > Click here for 4 FREE TRIAL ISSUES of Sports Illustrated! If you're > satisfied, your subscription will continue at the guaranteed lowest rate > of $.75 an issue for 52 issues! http://clickhere./click/678 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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