Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Hi Lynne and all. I also was diagnosed 3 years ago with PSC. You should have seen the doctors face when he told me. I have to tell you that I have been very scared since. I have had crohn's since I was 7 and going to be 47. I have had multiple bowel resections and I guess this is why I have gotten PSC. I have been looking at all the posts and I have to tell you that most of the posts have been about liver transplants. I was told that I would probably get cancer, and that I will also need a liver transplant. The thing is that you have to hope the transplant comes before the cancer or, you will die. I have been severely upset for 3 years with no one to talk to. I was diagnosed thru ERCP. I live in south florida, have two boys 17 and 19 and been married 21 years. Thanks to all Dana Rados Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Dana, Hey. My Dr. says I'm 5 to 10 years away from transplant. I hope he's right. I just had a MRI and I was clear of cancer. Talk to me cause... I ended up in counseling from my diagnosis, and on depression meds., anxiety medicine... I was a mess for the 1st four to five years. I'm also on Urso. You? I am just now learning to live with it. I too have been so scared that I am going to die soon. I just lost my dad 10 months ago in a car accident and since that, I'm not "as" scared. But I know when I'm having a bad time thats when I get scared!! Over Christmas break I ended up in the E.R. with abdominal pains, and cat scan, blood work out the wazoo!!! I had an infection in my bile duct. My liver is huge and hanging way lower than it is suppose to. So I don't know if things are changing. But it's those times that it gets scary. Anyway keep in touch and I'll talk to you soon! Lynn Dana Rados wrote: Hi Lynne and all. I also was diagnosed 3 years ago with PSC. You should have seen the doctors face when he told me. I have to tell you that I have been very scared since. I have had crohn's since I was 7 and going to be 47. I have had multiple bowel resections and I guess this is why I have gotten PSC. I have been looking at all the posts and I have to tell you that most of the posts have been about liver transplants. I was told that I would probably get cancer, and that I will also need a liver transplant. The thing is that you have to hope the transplant comes before the cancer or, you will die. I have been severely upset for 3 years with no one to talk to. I was diagnosed thru ERCP. I live in south florida, have two boys 17 and 19 and been married 21 years. Thanks to all Dana Rados Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Dana, Welcome to the group - I think you'll find a lot of support here, as well as a lot of great information. I hope we can calm your nerves a bit as well, although this is a nerve-racking disease to have. I have PSC & autoimmune hepatitis, and a long history of ulcerative colitis. I had the j-pouch surgeries in 10/2005 and 1/2006. I've actually been through quite a lot with the colitis, and once past the first surgery in 2000 (for adenomas) I thought I'd be safe from medical stuff for a long time. But during that surgery it was noticed that my liver looked cirrohtic (sp). I go through times when I can put this out of my head, and then other times it over whelms me. It's difficult. I go to a Liver Support group that also helps. It's provided by the American Liver Foundation. Sometimes family isn't that helpful because they are so concerned they don't want to hear it. Wishing you the best. -Marie Type your favorite song. Get a customized station. Try MSN Radio powered by Pandora. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 Thank you Marie. I am sorry that I did not respond right away, however, I really feel sick reading all these online. I am not on anything as of yet. Tried urso, but really uspet my stomach and gave me more dirrhea than I already had. Basically, I have been hospitalized once with fever and pain. They watch my liver levels and ca19. I get stomach bloating and upper right side pain. It goes up and down and severely depressed, and anxious. You know, I have lived with Crohn's since I was a child and have most of my colon and small intesines outl I live in back and neck and shoulder pain all the time.. And to top it off, I am post menapausal at 47. I am kind of observing the entry's which really does make me sick to my stomach. I need to toughen up and be able to deal. Part of the problem is that I only have been told terrible things by the first doctor that I saw and I am not sure where I fit in here. I do know that I have dealt very well with the crohn's. unbelievably, however, I was young and had such a great attitude. I am starting to fray. I dont even know what to ask the group. Thats how confused and upset I am. I was diagnosed 3 years ago. Thank you for your support. Tell me how active you are..... and some things you do daily, your age.... where you live... Thanks DanaMarie Nilsson wrote: Dana, Welcome to the group - I think you'll find a lot of support here, as well as a lot of great information. I hope we can calm your nerves a bit as well, although this is a nerve-racking disease to have. I have PSC & autoimmune hepatitis, and a long history of ulcerative colitis. I had the j-pouch surgeries in 10/2005 and 1/2006. I've actually been through quite a lot with the colitis, and once past the first surgery in 2000 (for adenomas) I thought I'd be safe from medical stuff for a long time. But during that surgery it was noticed that my liver looked cirrohtic (sp). I go through times when I can put this out of my head, and then other times it over whelms me. It's difficult. I go to a Liver Support group that also helps. It's provided by the American Liver Foundation. Sometimes family isn't that helpful because they are so concerned they don't want to hear it. Wishing you the best. -Marie Type your favorite song. Get a customized station. Try MSN Radio powered by Pandora. Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 Hi Lynn I am so sorry to hear about what you are going through!!! I am sorry not to have gotten back to you earlier, but, every time sit down to type, I read and then feel sick to my stomach. I am not on any meds. I tried urso 3 years ago and was in the bathroom constantly. I have been such a positive patient unbelivable until 3 years ago when I was diagnosed and seeing the fear in the doctors faces and the prognosis freaked me out. I have been so depressed that i have been unable to think, or find anything that excites me. I have had alot of pain, in my neck and shoulder and down my back. I spent all winter (last year( on pain meds. Cant find anything wrong. My first son went to college last year. I thought that was my problem, but, knowing whats coming down the pike scares the shit out ouf me, and i dont know if I have that fight it attitude anymore. I also have been dealing with post menapause for the last 3 years. Compared to the group, my problems are nothing!!!! Please tell me how you are dealing with your bag of issues. your age, what keeps you busy..... Thanks DanaLynn Livingston wrote: Dana, Hey. My Dr. says I'm 5 to 10 years away from transplant. I hope he's right. I just had a MRI and I was clear of cancer. Talk to me cause... I ended up in counseling from my diagnosis, and on depression meds., anxiety medicine... I was a mess for the 1st four to five years. I'm also on Urso. You? I am just now learning to live with it. I too have been so scared that I am going to die soon. I just lost my dad 10 months ago in a car accident and since that, I'm not "as" scared. But I know when I'm having a bad time thats when I get scared!! Over Christmas break I ended up in the E.R. with abdominal pains, and cat scan, blood work out the wazoo!!! I had an infection in my bile duct. My liver is huge and hanging way lower than it is suppose to. So I don't know if things are changing. But it's those times that it gets scary. Anyway keep in touch and I'll talk to you soon! Lynn Dana Rados <dnrados (AT) yahoo (DOT) com> wrote: Hi Lynne and all. I also was diagnosed 3 years ago with PSC. You should have seen the doctors face when he told me. I have to tell you that I have been very scared since. I have had crohn's since I was 7 and going to be 47. I have had multiple bowel resections and I guess this is why I have gotten PSC. I have been looking at all the posts and I have to tell you that most of the posts have been about liver transplants. I was told that I would probably get cancer, and that I will also need a liver transplant. The thing is that you have to hope the transplant comes before the cancer or, you will die. I have been severely upset for 3 years with no one to talk to. I was diagnosed thru ERCP. I live in south florida, have two boys 17 and 19 and been married 21 years. Thanks to all Dana Rados Everyone is raving about the all-new Yahoo! Mail beta. Need Mail bonding?Go to the Yahoo! Mail Q&A for great tips from Yahoo! Answers users. Quote Link to comment Share on other sites More sharing options...
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