Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 For what it is worth. I am 6 ½ years out and healthy as a horse. Statistics are just that. It is different for everyone. PSC '01 >>> heather trikiniki5@...> 3/26/2008 3:20 PM >>> question: does anyone have long term psc? 20+ years without transplant? Are the statistics absolute? I keep reading about 7 to 10 years before liver failure. is this always the case? I never read any article that have survivors. Don't want to bring anybody down. Just wondered if anyone out there knows. Thanks =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 For what it is worth. I am 6 ½ years out and healthy as a horse. Statistics are just that. It is different for everyone. PSC '01 >>> heather trikiniki5@...> 3/26/2008 3:20 PM >>> question: does anyone have long term psc? 20+ years without transplant? Are the statistics absolute? I keep reading about 7 to 10 years before liver failure. is this always the case? I never read any article that have survivors. Don't want to bring anybody down. Just wondered if anyone out there knows. Thanks =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi , Please don't let the statistics pull you down. There are people in our group who have lived with PSC for a long time without needing a transplant. PSC works differently in all of us. I, personally, was diagnosed five years ago, but I had been followed closely for 12 years before that because of "undiagnosed" elevated liver functions. Like many other PSCers, I am leading a very full and fulfilling life. There are many positive stories in our group, which disprove the absoluteness of statistics. Ricky PSC 2003> To: > Date: Wed, 26 Mar 2008 20:20:33 +0000> Subject: fear of the future> > question: does anyone have long term psc? 20+ years without> transplant? Are the statistics absolute?> > Thanks> > > > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi , Please don't let the statistics pull you down. There are people in our group who have lived with PSC for a long time without needing a transplant. PSC works differently in all of us. I, personally, was diagnosed five years ago, but I had been followed closely for 12 years before that because of "undiagnosed" elevated liver functions. Like many other PSCers, I am leading a very full and fulfilling life. There are many positive stories in our group, which disprove the absoluteness of statistics. Ricky PSC 2003> To: > Date: Wed, 26 Mar 2008 20:20:33 +0000> Subject: fear of the future> > question: does anyone have long term psc? 20+ years without> transplant? Are the statistics absolute?> > Thanks> > > > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi , Please don't let the statistics pull you down. There are people in our group who have lived with PSC for a long time without needing a transplant. PSC works differently in all of us. I, personally, was diagnosed five years ago, but I had been followed closely for 12 years before that because of "undiagnosed" elevated liver functions. Like many other PSCers, I am leading a very full and fulfilling life. There are many positive stories in our group, which disprove the absoluteness of statistics. Ricky PSC 2003> To: > Date: Wed, 26 Mar 2008 20:20:33 +0000> Subject: fear of the future> > question: does anyone have long term psc? 20+ years without> transplant? Are the statistics absolute?> > Thanks> > > > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 , I'm not 20+ but I'm getting close to it at 19 years. I had my bile ducts removed 19 years ago this April. I was looking like I was headed for a transplant 10 years ago but started taking USRO and my liver enzyme numbers have been better these last 9 years then they were the first 10 years. With continuing medical advancements our chances of a very long live are always getting better. A lot of the information on the net is out of date. Keep the faith and the faith will keep you (trust in God). Ian (51) PSC 89 question: does anyone have long term psc? 20+ years withouttransplant? Are the statistics absolute? I keep reading about 7 to 10years before liver failure. is this always the case? I never read anyarticle that have survivors. Don't want to bring anybody down. Just wondered if anyone out there knows.Thanks -- Ian Cribb former P.Eng. (resigned in good standing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 > question: does anyone have long term psc? 20+ years without transplant? Are the statistics absolute? I keep reading about 7 to 10 years before liver failure. is this always the case? I never read any article that have survivors. Don't want to bring anybody down. Just wondered if anyone out there knows. Hi , I know the feeling of reading the stats on PSC and feeling afraid. My son was dx last year and I had the same fear and question for the boards then that you have now. In the early months after dx, I kept thinking he's 12 now, will he make 20, 25? I'm no expert on PSC, but have come to learn more and I do know that there are PSCers who buck the worrisome stats, most definitely -and some by quite a lot. The average of 7-10 or 7-12 yrs is not always the case. I have faith now (where I didn't before) that my son may go many years before end-stage, well past the oft read avg stats. It's possible he may go so long before things worsen that the cure will be found before he's at end-stage, or some treatment may be found in that interim that will halt progression. And, if he does come to end- stage before a cure or treatment and gets a transplant, that's not the end of anything, but another beginning and another route to stretch his lifespan even further. He'd still be a survivor of liver disease w/ a transplant. Your question doesn't bring me down at all, but does remind me of the place I once was; I hope that you can read into my post to find that there will likely be a different place for you as you learn more and hear from others who HAVE bucked the stats. I'm not always positive about the future of my son's psc, but it was a rather significant boost to learn that there's no lock-in to 7-12 yrs or thinking of a transplant as a negative end result. I have much hope and faith for his future now -and hope you garner the same feelings as you learn more. Best wishes and God bless, Meghan, mom to 13yo Wyatt-psc, ibd, fap, a-i hives, gerd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 > question: does anyone have long term psc? 20+ years without transplant? Are the statistics absolute? I keep reading about 7 to 10 years before liver failure. is this always the case? I never read any article that have survivors. Don't want to bring anybody down. Just wondered if anyone out there knows. Hi , I know the feeling of reading the stats on PSC and feeling afraid. My son was dx last year and I had the same fear and question for the boards then that you have now. In the early months after dx, I kept thinking he's 12 now, will he make 20, 25? I'm no expert on PSC, but have come to learn more and I do know that there are PSCers who buck the worrisome stats, most definitely -and some by quite a lot. The average of 7-10 or 7-12 yrs is not always the case. I have faith now (where I didn't before) that my son may go many years before end-stage, well past the oft read avg stats. It's possible he may go so long before things worsen that the cure will be found before he's at end-stage, or some treatment may be found in that interim that will halt progression. And, if he does come to end- stage before a cure or treatment and gets a transplant, that's not the end of anything, but another beginning and another route to stretch his lifespan even further. He'd still be a survivor of liver disease w/ a transplant. Your question doesn't bring me down at all, but does remind me of the place I once was; I hope that you can read into my post to find that there will likely be a different place for you as you learn more and hear from others who HAVE bucked the stats. I'm not always positive about the future of my son's psc, but it was a rather significant boost to learn that there's no lock-in to 7-12 yrs or thinking of a transplant as a negative end result. I have much hope and faith for his future now -and hope you garner the same feelings as you learn more. Best wishes and God bless, Meghan, mom to 13yo Wyatt-psc, ibd, fap, a-i hives, gerd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 , No one know how how much time they have left, wither they have a disease or not. All any of us can do is live our lives one day at a time, and decide what kind of impact do we want to have on evey person we meet. That does not mean that I don't have times that I feel sorry for my self, but I do try to put a time limit on it. But I do not ask why me, I ask why not me, I am no more special than the next person. God did not promise any of us tommorrow, but Hed did promis us eternity. It is a process to find a balance co existing with a chronic illness, I found help with reading some books from the library about others who are living with chronic illness and writting out my emotions. I also look for activities that keep my mind busy like I am learning to sew and volunteering for homeless families. Well this post is way to long. Know that you are in my thoughts and prayers. PSC 5/07 Listed > >Thanks Jeff for your message. That is exactly what has been going > thru my head. Im making choices based on fear. You guy gave me some > hope. I'v been reading medical studies lately and they left me > hopeless. Not a good place to be. thanks again > > > > , > > > > Try not to worry too much over the statistics. I'm > not " officially " at 20+ > > years, but close....was very ill for a couple of years before > docs figured it > > out in 1989. I've had some very tough times through the years, > but for the > > most part I've been lucky and still live a somewhat normal life. > Way back in > > '89 I was told " no doubt " I would need a transplant within 7 > years...thanks > > docs for almost scaring me to death!...literally. But seriously, > way back > > then doctors had so little to go on about psc that's what they > really believed. > > We are coming to know that for many, psc will be a very long > term chronic > > disease....it's hard to know if we are really the lucky ones or > not. When I > > see someone like Klug that looks like he is doing great with > his > > transplant I briefly find myself wishing I could just get one and > be done with it > > already and not constantly deal with it! But then I get real, > knowing that > > transplants are not foolproof and come with their own set of > problems. All of > > our experiences with psc are different. I try to be mindful of > the future, > > but not put to much weight on the statistics and move on with > trying to do the > > things I want to accomplish....and have done more than I ever > thought I > > would! Early on I made the mistake of letting the statistics > set the bar for > > what I would do with my life, then around year 10, I was like, > wait a minute? > > Hopefully you can avoid that. :-) > > Jeff > > > > > > ------------------------------------------------------------------ - > ----------- > > --------------------------------------------------------------- > > > > > > > question: does anyone have long term psc? 20+ years without > > transplant? Are the statistics absolute? > > > > > > > > **************Create a Home Theater Like the Pros. Watch the video > on AOL > > Home. > > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? > ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
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