Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Malanie1, Thanks for the info on how to check 2's obit. Already saddened by the news of her death, I was even more depressed after reading the obit and putting a face to her. I have only read news of her and from her and never realised that she was only 42. Such a big loss. My prayers to her family, you and all of us. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Rita, I agree with you. What a beautiful person. Bobby & Anne Bobby dx 5-00 PSC, transplanted 2-4-04, re-dx PSC 10-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Bobby, Was reading that you were re-diagnosed with PSC post-tx. Would you mind sharing what that translates to as far as recovery? Will you be relisted for another transplant or basically start the process all over again? > > Rita, I agree with you. What a beautiful person. > > Bobby & Anne > Bobby dx 5-00 PSC, transplanted 2-4-04, re-dx PSC 10-04 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 1, Thank you so much for sharing this - I cried reading 's obit. Although seeing her picture made me feel so good inside, she is a beautiful person and from the posts I have read, she is not only beautiful on the outside but was on the the inside as well. One good thing that did come out of this is that we all have a guardian angel watching over us now and how lucky we are it is . I don't post to often but I read the posts daily and I must say M1, you are a wonderful person. You are very strong and was blessed to have you in her life. Both of you are better individuals because of one another. Know that my prayers are with both of you and your families. , OH Husband - Crohns, 88; PSC, 6/05 (going in for a small bowel resection Jan. 26th) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 : They have put him on CIPRO 3X a week as a maintenance dose....once they got him on that, he quit having the cholangitis attacks...he hasn't been able to go back to work (which REALLY bothers him) because of the fatigue, but believe me he is 100% better than he was pre-transplant. They will do another transplant when the time comes, but are hopeful he will die of old age first!!ha Of course the thing that bothers me is the chance of the bile duct cancer.... Bobby & Anne Bobby dx 5-00, transplanted 2-4-04, rex 10-04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Anne, Wow, that is amazing and I like you positive outlook. I too am concerned about the bile duct cancer aspect. My understanding (is it correct?) is that once a diagnosis of bile duct cancer, no transplant and very short time left? Tom had his last ERCP about 4 years ago with very large blockages in both hepatic ducts as well as the common bile duct. However, they just doubled his Urso (2000mg a day) and his liver panel continues at steady numbers. When I explain to people that he won't get listed until his liver fails and that it is a race to get a liver before bile duct cancer gets the upper hand, they are astounded by the possibilities. Does anyone know the percentage of bile duct cancer occurences while awaiting tx? (wife of Tom, 40, PSC '94, diabetic, awaiting confirmation UC) > > : > > They have put him on CIPRO 3X a week as a maintenance dose....once they > got him on that, he quit having the cholangitis attacks...he hasn't been > able to go back to work (which REALLY bothers him) because of the > fatigue, but believe me he is 100% better than he was pre-transplant. > They will do another transplant when the time comes, but are hopeful he > will die of old age first!!ha Of course the thing that bothers me is > the chance of the bile duct cancer.... > > Bobby & Anne > Bobby dx 5-00, transplanted 2-4-04, rex 10-04 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 , I don't know the statistics, but I just emailed the transplant surgeon at U of C about bile duct cancer in someone who has already been transplanted...and this is what he said..... " Happy New Year to you. Yes, people with PSC do develop bile duct cancers, most commonly prior to liver transplant. Although patients can develop bile duct cancer after transplant, that is rare and most likely was from cancer from the original (PSC) liver. It is very unusual for someone with PSC, who obtained a new liver, to develop bile duct cancer in the new liver without having it in the original. I guess you can get a PSC liver as your transplanted organ and develop bile duct cancer in that one. As we hook up the intestines to the new liver in a way different from what we are born with, it is hard to look at the bile duct of the newly transplanted liver. This is a problem we all have. " I hope this helps. Best to you and Bobby. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 , Mark F. would probably know the statistics...I believe he was transplanted in ville, FL...hopefully, he will have the statistics answer for you... Bobby & Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Dear . People that can still think of the good that they may do for others ,even in the midst of their own grief ,are truly angels. God bless them for thinking of Partners and of all the future people who will be affected by this disease. Their generosity will help generate positive change for those struggling with PSC. I know that would be pleased and you have been the kind of friend that everyone wishes they could have. God grant you peace after the loss of this special friend, , we love you! I will make a donation. Lee > > > Lee, I mentioned to Lynn, 's sister-in-law that there was > a PSC > foundation designed to raise money for research. Then, yesterday > afternoon , M2's brother called for the name and web address. I > was excited to see that PSC Partners Seeking a Cure is a recommended > foundation for donations! I'm sure you are as well. > Quote Link to comment Share on other sites More sharing options...
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