Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Now , repeat our Motto after meŠTogether in the Fight, Whatever it Takes! Welcome to the group. Barb: You have become more and more valuable to us here. Thanks for the nudge to . I will keep it for myself, too. dee wife of bob, ileo 60's, psc '99, currently bells palsy -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Oh , my heart goes out to you for all you have been through. It is never time to go as long as you have an interest in life and the pleasures that can be found in any one day. Fight as long as you can. We are here to support you. Lee > Hi, newbie here with a dilema, > > In January of 1996 I received a liver transplant for PSC. A week later > a clot formed in my hepatic artery and killed it. Six weeks later I > was transplanted again and all was well. Six years later the PSC came > back and after two years with a tube in my side I was transplanted > again on Nov5 2004 (#3 if you are keeping track). I just found out my > AP is up and I am going for a PTC and biopsy next week. If the PSC is > back should I get on the list again or is it time to go? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 , Welcome to our group and thank you for sharing your story and dilemma with us. You have been through so much in the past 10 years and I am sure you are just worn out and frightened. I hope and pray that your AP is up for another reason other than reoccurrence. My son also had a transplant and then had to have another 10 days later because he also had a clot form in the hepatic artery that destroyed his gift he got from his older brother. He too was just recently diagnosed again with psc. I would never tell him it was time to go and I say the same to you. Each day you fight to live is just one day closer to finding a treatment or maybe even a cure. I can’t imagine how hard it must be to face the possibilities of everything all over again. Hang in there…we are here for you. Joanne (mom of Todd, 19, psc 12/01, Crohns 1/02, tx twice 12/03, recurrent psc 12/05, living life to the fullest in 06 and going to the SuperBowl with his brother !!!) What would you do? Hi, newbie here with a dilema, In January of 1996 I received a liver transplant for PSC. A week later a clot formed in my hepatic artery and killed it. Six weeks later I was transplanted again and all was well. Six years later the PSC came back and after two years with a tube in my side I was transplanted again on Nov5 2004 (#3 if you are keeping track). I just found out my AP is up and I am going for a PTC and biopsy next week. If the PSC is back should I get on the list again or is it time to go? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 -----Original Message----- Hi, newbie here with a dilemma, If the PSC is back should I get on the list again or is it time to go? Hi , IMHO there is no dilemma…..Never, Never give up!! You’ve been there, done that, you know what to expect and know how wonderful life can be on the other side of transplant. You had 6 good years, next time who knows, you might have 26! Things are changing all the time, new procedures, new medicines, new doctors, who knows how long any of us will live? We just have to keep trying and working at it. There must be a lot of people who love you and would want you to keep living, I know I do and I just met you. Besides that, your past transplants you walked alone, now that you found us, you have at your very finger tips a load of good folks who will be at your beck (or hunt & peck) and call. We’ll keep you informed, work for more organ donors and eventually a cure. And we’ll do it with a sense of humor, through good times and bad with honesty and caring, you’ll never be alone again. We have others who are going for a 3rd organ or have already had their 3rd. You’re in good company. Now , repeat our Motto after me…Together in the Fight, Whatever it Takes! Welcome to the group. Barb in Texas - Together in the Fight, Whatever it Takes! Son (Ken) 31 - UC 91 & PSC 99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Well, you could join the exclusive triple-tx club with Steve and Rendall. The double-tx club has (at least) nine members. Hang in there. Arne 54 - UC 9/77 - PSC 4/00 Alive and (mostly) well in Minnesota -----Original Message----- From: [mailto: ] On Behalf Of jeep_snow Hi, newbie here with a dilema, In January of 1996 I received a liver transplant for PSC. A week later a clot formed in my hepatic artery and killed it. Six weeks later I was transplanted again and all was well. Six years later the PSC came back and after two years with a tube in my side I was transplanted again on Nov5 2004 (#3 if you are keeping track). I just found out my AP is up and I am going for a PTC and biopsy next week. If the PSC is back should I get on the list again or is it time to go? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 , I agree with everyone else here. You should not hesitate. There is absolutely no reason you should feel like you are taking organ due others. I don’t know how your belief system works, but mine is this. I think God should be the judge of when it is time for everyone. Some could take that to mean that possible intervention would be inappropriate. After watching “Something the Lord Made”, a movie about heart surgery and the blue baby thing…I understood how I could feel that way AND feel like intervention IS appropriate. I think God gave the surgeons the skills and the knowledge to do what they have learned to do. It would be wrong of you NOT to utilize that. This is meant to encourage you in the right direction, not to be a lecture on God. You need to be at peace with your choice. You have no reason NOT to be. Welcome to the group! Blessings, Mom of Noah (8) UC, PSC, osteopenia ‘05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Go where? I would say you are a statistical oddity. You are bound to catch a break and are long overdue. The odds are so much against you continuing to have these rare setbacks I'd sure go for it again, perhaps at a different center, but none the less. Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 , I read your posts and the replies with great interest. My daughter (now 16) was diagnosed 2 years ago with PSC and UC. I had to stop asking the " why her " question and start asking the what next question. I do believe that we are all here for a reason, and we are all experiencing PSC (either as a person with PSC or person who loves someone with PSC) for a reason. I also believe that it's quite possible we won't know that reason while here on earth. You asked why you should get so many chances? I don't know why, but I do know that you have so much to offer each of us here - and after your fourth successful run at it you will have even more to offer. You should have another chance so that you can be an inspiration to many others who will also experience reoccuring PSC. You should have another chance so that the medical community can learn from you. We've had some discussions here about the difficulties with the " who gets the organ " issue and the outcome has always been a conversation about how the real issue is not who should get the organ, but how can we get more donors. Let's fight together so that more people will become donors and you will get your transplant, as will everyone else in the group who needs one now or will in the future. I look forward to hearing more from you as I know I can learn a great deal from you. LINDA Mom of Suzanne, 16; IBC (UC?) 1/04; PSC 3/04 -------------- Original message ---------------------- I'm already in the 3x club...another one would be 4x. Who could I join in that one! Thank you for all the positive feedback. Please allow me to clarify. I'm not having trouble with this because of 'how much I would have to go through'. In fact, my last transplant in Nov'04 was not too far removed from outpatient surgery. I was skiing on Christmas day that year! Why should I get so many chances when there are people dying every day waiting for one chance? This bothers me a lot. I'm divorced and my sons are grown. My friends helped talk me into getting the third...and yes, of course, I very much want to live!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 : YES, you should get another transplant!!! Bobby & Anne Bobby dx PSC 5-00, transplanted 2-4-06, redx PSC 10-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 >> Why should I get so many chances when there are people dying every day waiting for one chance?>> I've pondered a variation on this theme for years. The health care resources expended to keep my son alive could have gone to vaccinations for millions of kids, preventive care for thousands of the uninsured. But the problem is not that my son needs so much. The problem is that society devotes so little. Take what you need. Then do everything you can to replenish it tenfold. Advocate for organ donation, give blood, write your lawmakers urging bigger budgets for health care. Sometimes a decision not to pursue additional treatment is a gift of peace to an overtaxed body and soul. But if you feel good, have seen your life improve after other transplants, and have a reasonable chance of surviving another -- then you have an obligation to stay alive, and keep working to give others the same chance. Pam (mom to Quantell, 15, dx 1996, tx 2001) Quote Link to comment Share on other sites More sharing options...
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