Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 curious as to why more people on here are not opting for the Live Liver Transplant. For me it wasn't that I didn't look at that option, it's that I had 5 potential donors disqualified. The criteria sound so simple, but the reality is they leave nothing to chance. The docs check every aspect of a person - physically, emotionally, financially, etc. All of my donors were turned down for one reason or another and I simply ran out of offers. This may be the case for others in the group, but I'll let them speak for themselves. (MO) www.caringbridge.org/visit/melaniejsPSC & UC '84, RA '96, Chronic pancreatitis '97, multi DVTs '87-'00, Pulmonary Embolism '98, Raynauds '02, Asthma '07, and various other inconveniences. TX'd 01/08/08 and doing well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 I'll keep hoping and praying that a donor works out for you, too! I got lucky and got a liver after 2.5 years of waiting, so it all turned out well. But, I was pretty sick and getting sicker by the day so I hope you can avoid unnecessary waiting. Hang in there! (MO) Who's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 I'm curious as to why more people on here are not opting for the Live Liver Transplant. I would love to hear the reasons why. For myself, I've had several relatives including sister, cousins, son, father & several friends who have offered. When it's time, my sister is the one who I have asked to step up to the plate for me, but it was her wanting to do it before I asked that was so important to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 , Remember, please, that as time passes the list of potential donors may change. Everyone will be in a different place in life by the time you're ready for tx. In my experience, some of those who offered early on kept their names on the list, some could no longer afford to whether it was family obligations or other things, some could not bring themselves to do it when it came time, out of fear. Others were removed before the testing process even began because they had developed health conditions in the interim. I'm only telling you this to prepare you, since it was a bit of a roller coaster - the names constantly changing. I never got upset about the situation or with anyone who opted not to get tested, because I knew/know it's a huge decision and they wouldn't have any benefit except the act of giving. If that wasn't enough then I didn't want them to even attempt it. There's just no way to repay a gift like that, or to even say thank you - it's just too small. I pray that when tx comes around for you that your very first potential donor passes with flying colors and that you are not forced to ride that roller coaster. PSC is ride enough for all of us! Take care, (MO) www.caringbridge.org/visit/melaniejsPSC & UC '84, RA '96, Chronic pancreatitis '97, multi DVTs '87-'00, Pulmonary Embolism '98, Raynauds '02, Asthma '07, and various other inconveniences. TX'd 01/08/08 and doing well!Who's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 My Dr at the UofM hospital because i need all the ducts JeanneKaryn wrote: I'm curious as to why more people on here are not opting for the Live Liver Transplant. I would love to hear the reasons why. For myself, I've had several relatives including sister, cousins, son, father & several friends who have offered. When it's time, my sister is the one who I have asked to step up to the plate for me, but it was her wanting to do it before I asked that was so important to me. Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 -----Original Message----- I'm curious as to why more people on here are not opting for the Live Liver Transplant. In our case Baylor in Dallas isn’t doing them. Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Barb, What a shame. I know for me, just know I have the option of the LLT makes my worry so much less. My Doctor has promised she won't let me get too sick before actually going ahead with one or the other. Now if she could only help with this never ending burning skin and itching...aarrrgh. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 , Thank you so much for your response. You are right the criteria does sound quite simple. Sorry it turned out the way it did for you. I'll keep my fingers and toes crossed that one of my donor offers work out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 I'm curious as to why more people on here are not opting for the Live Liver Transplant>>> 2 reasons for me - 1- the center closest to me doesn't do them and 2 - the wait time at my center is pretty short. From the time I was officially listed til tx was just 10 weeks. Not really that long. Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 I agree with what said. I have 6 people that have offered my a chunk of their liver when the time comes, but it all depends on if they are accepted or not. I hope one of my friends or relatives are " good enough " for it when the time comes. And I agree...the itching is horrible. PBC 10.06 PSC 08.07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 I thought I would jump in and give my 2 cents worth to this topic- I had a LDTransplant. My son, Simon, was my donor. In my case, I had been on the list for 3 years and was slowly moving up the list. Once I started to decompensate, the doctors at UPMC asked me to consider it. I had always said I would not do this. Simon had always said to me that he would give me part of his liver and we would laugh about it.......I had always said no. But by the end of that summer I was in bad shape so it became a moot point and he persuaded me. It was the hardest thing I have ever done. But I'll tell you something, I am so grateful for him saving my life. I was very lucky because a lot of the time this doesn't work out. I have had a lot of people question me about my decision to do this - one of our group members even said he could not have done it. I don't think he was trying to be offensive, but as I pointed out to him, he was and is not in the same place I was so he could not possibly understand where I was coming from. It is definitely not a decision to undertake lightly. I hope this helps you. I would advise that you research all of your possibilities for centers who do Live Donor Transplant. Some are much better than others. I had mine done at UPMC. And I feel that they have given me excellent care. I f I can answer any more questions please email me. Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesWho's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 I never even considered it. There are a lot of risk for the donor plus all the recovery time. I don't know if my mom could have handled having two of her children having major surgeries at the same time. As with Jeanne, I also was at the U of Mich and the doctors don't even bring up the possibilty of a live donor. I'm sure they would do that, but I think they would prefer not to. PSC 89, TX1 97, TX2 04 > > I'm curious as to why more people on here are not opting for the Live > Liver Transplant. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Oh Ali, Your response brought tears to my eyes. My 24 year old son is one of the people who has offer to do a Live Liver Transplant for me. I've already told him that he was at the bottom of my list of candidates, because I didn't think I could take the pressure of him doing this for me. It's different with my sister and cousin, we are all grown women and in a different a part of our lives. How wonderful for you that it worked out for your son to give you this amazing gift.... I guess you gave him life once and now he has returned the favour. I live in Toronto area and my doctors work out of Toronto General, they do their fair share of liver transplants a year and have a fantastic reputation. I wish you continued better health. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Dear Karyn, Thanks for the good wishes! I am feeling great and very grateful. As I said in my post, it just worked out that way. No one else in my family was a match. And his youth was in his favor. He sure did heal quickly. Where are you in the PSC progression? I wish you all the luck in the world with Live Donor Transplant. Just make sure that you have researched all of your options and transplant centers. Very important. Look at the numbers on UNOS which is a good place to start. As you check out centers look at their research - that is how I got to be a protocol patient at UPMC where they are doing very exciting research on Chimerism and tolerance. Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesWho's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Ali, I am just in stage one liver damage right now. A member of the Toronto General Hospital met with me a month ago to evaluate me for future transplant and to check on my quality of life at this point. He wanted to know if I ever considered drastic measures such as jumping off of a bridge. I assured him that aside from the itching driving me up the wall, I'm still here to fight the battle. So now we wait until my liver enters stage two damage. My main complaint being the never ending itching. (It's now 4:20 am here and I cannot sleep because of the itching and burning skin) I also had a sub-total colectomy last may and my 4 days they figured I'd be in the hospital turned into 19 most with out any food at all. Needless to say I lost so much weight and was under weight to begin with. It's been a hell of a year just trying to gain back some of the weight and getting used to having next to no colon left. So I am relieved to know I probably have at least a year to build my self up again before having to deal with the transplant. I am very comfortable with the doctors and the hospital where I will eventually have the transplant. Toronto General has the largest liver transplant program in Canada. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Isn't it interesting when you are being evaluated and someone asks those kinds of questions? I just used to laugh and say what are you talking about? I was always committed to the long haul as I am now after Tx. I think people who have never had any life threatening experiences can't imagine what it might be like to live the way you have to live waiting for a Tx. Life is good even when it is not. I guess for me I had this attitude that I would beat it one way or another. I hate that you are itching so much. Have they tried Rifampin for you? It was the only thing that eventually worked. If they haven't, have that conversation with them! I remember the burning skin as well. By far the worst symptom of PSC. My colon is still intact, long may it last. Amazingly, my colitis has been great since the tx. I sure am thinking about you and sending you good thoughts. Just ask questions whenever you want. Also join our Tx group which is a sister group of this group. Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesWho's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Dear Barb, Thanks ! And I am glad the caregivers feel the same way too. They have a lot to put up with. I can't imagine how hard it must be to observe and not be able to change what you all see. You all make it possible for us to be here! How is Ken doing? Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesWho's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Ali, I am so glad all went well for you and your son. I know for me one of the first things I thought of when I was told about my PSC was that I was relieved that my children are the wrong blood type for me, so I would not have to make the difficult choice. I am sure it was not a decision that you made lightly. I admire both of your courage and wish you the best. PSC 5/07 Listed > > Dear Karyn, > > Thanks for the good wishes! I am feeling great and very grateful. As I said > in my post, it just worked out that way. No one else in my family was a match. > And his youth was in his favor. He sure did heal quickly. Where are you in > the PSC progression? I wish you all the luck in the world with Live Donor > Transplant. Just make sure that you have researched all of your options and > transplant centers. Very important. Look at the numbers on UNOS which is a good > place to start. As you check out centers look at their research - that is how > I got to be a protocol patient at UPMC where they are doing very exciting > research on Chimerism and tolerance. > > Ali > > > > BE A LIVE DONOR AND AN ORGAN AND TISSUE DONOR > > Ali Lingerfelt-Tait > 180 Blackberry Inn Rd. > Weaverville, N.C. > 28787 > > _www.Livertx-PSC _ > (http://health.groups.yahoo.com/group/Livertx-PSC) this a site that deals with Transplant issues for PSCers. > also - > > _www. _ (http://www.psc- support /) > a support group for folks with PSC and their families > > > > **************Biggest Grammy Award surprises of all time on AOL Music. > (http://music.aol.com/grammys/pictures/never-won-a-grammy? NCID=aolcmp003000000025 > 48) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Dear , Thanks for your good wishes as well. Although it was a hard decision to make,it was also an easy decision as well. I am extremely glad that my son was a good match for me as I was so ill. I think I was just very lucky. A lot of the time, live donors don't pass the necessary screening. Take care, Ali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 -----Original Message----- On Behalf Of alisoikias@... Life is good even when it is not. Ali, This is the most profound statement I’ve heard in a long time, it’s so very true and sums up the transplant experience in a nut shell. I believe even the caregivers feel this way. At least the caregivers I spoke to in the in-hospital support group. Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 -----Original Message----- How is Ken doing? He’s scheduled for an MRI/MRA Wednesday and he’ll get his monthly blood work done later in the week. When they have all of the results back we’re supposed to meet with the coordinator and surgeon on a clinic day. Ken’s portal vein, & splenic vein are totally blocked by blood clots. His superior mesenteric vein has a blood clot. His hepatic artery is now twisted and has a blood clot. He has a splenic artery aneurysm twice the diameter of the artery. If all that isn’t enough, his last labs were rotten. They just want to see if anything “has changed”. I don’t understand “changed” could anything get much worse? (I know it could.) He’s on 15mg of Coumadin, got a small cut on his finger this week and had to go to the ER. He wants to go ahead and get the next transplant as soon as he can, to get on with his life. I want him to wait as long as possible. I have such an overbearing feeling of doom, I don’t know what to do with it. I haven’t vocalize that to anyone except TJ. So much has gone wrong and makes the next transplant sound so very complicated and dangerous. I wonder too, how many livers they will give him before saying enough. Sorry I dropped all this on you, maybe that’s why your Life is good even when it is not stuck such a cord in me. Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 The UHU doesn't have a LLT program. They are hoping to get one up and running, but I don't know when. There are literally dozens of people who have offered a piece of their liver to . I would love to have had that option. wife of (psc 1995, CCa 2007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Barb,You , Ken and TJ will be in my prayers tonight and every night until things improve.I hope a new liver will be there for him when the time is just right.Take care,Lee He wants to go ahead and get the next transplant as soon as he can, to get on with his life. I want him to wait as long as possible. I have such an overbearing feeling of doom, I don’t know what to do with it. I haven’t vocalize that to anyone except TJ. So much has gone wrong and makes the next transplant sound so very complicated and dangerous. I wonder too, how many livers they will give him before saying enough. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 At least 4 people have offered for me (most related by marriage, one friend). It's been 8 years now, with no indication it will be needed (knock on wood). I hope that trend continues. Arne 56 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 I really hope that trend continues for you too Arne. Good for you and lucky you. Quote Link to comment Share on other sites More sharing options...
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