Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 My husband, Rick, had been diagnosed with PSC in June 2004, then was told recently that he had auto immune pancreatitis (AIP)two months ago. After another ERCP (for pain) and stent placement, his doctor mentioned that he has sclerosing cholangitis and we may be back to the original PSC diagnosis. He said that AIP, being so newly recognized, is probably the reason for Rick's diagnosis. What a roller coaster! I have decided to " walk in faith " and just help my husband stay positive and healthy. I have also decided to be more active in the cause, and have greatly enjoyed learning about the ideas for " getting the word out " about PSC and organ donation. I, too, grieve for Shauna and her family. She sounds like a remarkable woman. We are also struggling here, at home, with word that my son's football teammate has liver cancer---unthinkable! He was diagnosed and started chemo, all on his 14th birthday. The family has moved from one center back here to one closer to home, as he scores higher here; time is of the essence, because if the cancer spreads from his liver, he will no longer qualify for a transplant. I often times feel so overwhelmed with all of these insults to the health of those I know (or have never met) and love; I am grateful for the opportunity to talk about organ transplantation....it offers a chance to feel empowered when I feel as if life has given us too much. Thanks for being here; it is theraputic to type and weep at the same time! As always, I do continue to pray for all of you and those who love you. Tammy, wife of Rick, 48, AIP, (P)SC and ??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Tammy, I completely understand where you are at....my husband was transplanted on 2-4-04 and we knew there was a " chance " it would come back, but it came back as soon as they took him down on the prednisone...that was probably the day I crashed and burned in the whole four years...the shock gets you, but then you get the fighting spirit back and do just what you said... " walk in faith " . Our thoughts are with you and your family!! Bobby & Anne PSC diagnosis AGAIN!! My husband, Rick, had been diagnosed with PSC in June 2004, then was told recently that he had auto immune pancreatitis (AIP)two months ago. After another ERCP (for pain) and stent placement, his doctor mentioned that he has sclerosing cholangitis and we may be back to the original PSC diagnosis. He said that AIP, being so newly recognized, is probably the reason for Rick's diagnosis. What a roller coaster! I have decided to " walk in faith " and just help my husband stay positive and healthy. I have also decided to be more active in the cause, and have greatly enjoyed learning about the ideas for " getting the word out " about PSC and organ donation. I, too, grieve for Shauna and her family. She sounds like a remarkable woman. We are also struggling here, at home, with word that my son's football teammate has liver cancer---unthinkable! He was diagnosed and started chemo, all on his 14th birthday. The family has moved from one center back here to one closer to home, as he scores higher here; time is of the essence, because if the cancer spreads from his liver, he will no longer qualify for a transplant. I often times feel so overwhelmed with all of these insults to the health of those I know (or have never met) and love; I am grateful for the opportunity to talk about organ transplantation....it offers a chance to feel empowered when I feel as if life has given us too much. Thanks for being here; it is theraputic to type and weep at the same time! As always, I do continue to pray for all of you and those who love you. Tammy, wife of Rick, 48, AIP, (P)SC and ??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Bobby and Anne, Unbelievable! Your poor husband -- did things settle down once the prednisone was " upped? " How is he doing? And how are you doing? I'm sure you've posted, but I only have the chance to read the postings once in awhile. My husband is so frightened by the whole diagnosis that I read and pass on what will be helpful to him. It works for us and I don't blame him at all! I take great comfort from the postings -- just knowing we are not alone in this has been so helpful! Thanks again! Tammy -- In , " -Tinnell, " <@c...> wrote: > Tammy, I completely understand where you are at....my husband was > transplanted on 2-4-04 and we knew there was a " chance " it would come > back, but it came back as soon as they took him down on the > prednisone...that was probably the day I crashed and burned in the whole > four years...the shock gets you, but then you get the fighting spirit > back and do just what you said... " walk in faith " . > > Our thoughts are with you and your family!! > > Bobby & Anne > > PSC diagnosis AGAIN!! > > > > My husband, Rick, had been diagnosed with PSC in June 2004, then was > told recently that he had auto immune pancreatitis (AIP)two months > ago. After another ERCP (for pain) and stent placement, his doctor > mentioned that he has sclerosing cholangitis and we may be back to > the original PSC diagnosis. He said that AIP, being so newly > recognized, is probably the reason for Rick's diagnosis. What a > roller coaster! I have decided to " walk in faith " and just help my > husband stay positive and healthy. > > I have also decided to be more active in the cause, and have greatly > enjoyed learning about the ideas for " getting the word out " about > PSC and organ donation. > > I, too, grieve for Shauna and her family. She sounds like a > remarkable woman. > > We are also struggling here, at home, with word that my son's > football teammate has liver cancer---unthinkable! He was diagnosed > and started chemo, all on his 14th birthday. The family has moved > from one center back here to one closer to home, as he scores higher > here; time is of the essence, because if the cancer spreads from his > liver, he will no longer qualify for a transplant. I often times > feel so overwhelmed with all of these insults to the health of those > I know (or have never met) and love; I am grateful for the > opportunity to talk about organ transplantation....it offers a > chance to feel empowered when I feel as if life has given us too > much. > > Thanks for being here; it is theraputic to type and weep at the same > time! As always, I do continue to pray for all of you and those who > love you. Tammy, wife of Rick, 48, AIP, (P)SC and ??? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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