Re: New member()

[Guest guest]

Hello ,

My name is and I have been lurking in the group since Dec. I think. I've recently started to share a little and it seems to have really helped me out just reading and sharing in the experiences and information from the people here.

My son, Nick, is newly 9 years old and after an awful winter of illness, tests after tests, and, hospital stays an ERCP finally was the definitive answer that told us he had severe liver disease. His disease is someplace on the spectrum between Auto Immune Hepatitis and PSC. He has the beginning signs of cirrhosis, portal hyper tension, a few small var ices, very enlarged spleen, and enlarged liver. He is on Omeprazole twice a day and Ursodiol 300mg twice daily. This has brought his liver numbers closer to normal, and he seems to be experiencing less symptoms. He is pretty active and normal most of the time now and has been a lot of the time. No more contact sports b/c of the enlarged spleen though.

All this is over whelming at first. I am in the very beginning stages of dealing with liver disease to. I just wanted to share a bit of my story with you. Let you know you are not the only one here that is new to the game, and often feels lost. One of the women here told me to read the old posts and replies and as much information as I can about the disease. Become aware and knowledgable of all you can concerning his health issues. But most of all remain positive. It helps. It helps all involved. I struggle with this daily. But, I know it is worth having faith.

Sending you many blessing and warm thoughts,

in MO.

son, Nick(9) liver disease 1/09

From: Logan Berg <cswb (AT) safelink (DOT) net>Subject: Re: New memberTo: @ yahoogroups. comDate: Monday, April 6, 2009, 1:00 AM

Hi ,Where do you live? This must be very scary for you right now. I also had a similar experience with doctors not sure what disease I had. Many of us have been dx for longer than 20 or more years and are still fine. I was first hospitalized for upper abdomenal pain in '84, nine years later they took out my gall bladder, I got even sicker. I was dx with chronic non viral hepatitis somewhere in the middle of '93-'00. Dec '00 I was told I had Ulcerative Colitis and then that I had Primary Bilirary Cirrohsis and then a week later Auto-immune hepatitis. I was put on prednsisone and four months later when my liver numbers did not come down, they did an ERCP and then the doctor definitively diagnosed PSC. It took a few years for the doctor to get my UC under control.I was on Pred for a year and was on 6-mp for another few years. My UC is now in remission with no meds. April 17, must seem forever away right now. With all of the

symptoms he is displaying I would feel quite frantic (but that's the way I am). I had brown urine, my eyes were yellow (high bilirubin), my legs were swollen and I was itching like a mad woman at the time they dx me in Dec '00. From a liver biopsy, they placed me at stage 3. I was able to work another two years after dx. Many people have been able to work up until time of transplant. If we know where you are we might even be able to recommend a specific doctor. I would high recommend the book How Doctors Think by Jerome Groopman. I only found it this week at and Noble, but it has opened up a whole new world of communicating with doctors that I would have found invaluable before. Your husband is very lucky to have a wife like you. My husband is very supportive, but all the doctoring and research is my own project. I try to check e-mails every day. This is a very difficult time please feel free to ask any questions. I am wondering why the

doctor has your husband on Pentasa and Asocal? They both do the same thing, I thought? I could not take either one of them myself. I'm not sure why they are convinced that your husband began his liver disease 15 years ago. Do you know why? I have heard of many people in this group and those without liver disease that have reacted the same way your husband did after having his gall bladder out. Take care, Cheryl ID, 50, PSC/UC/ RP/undx kidney problem New member> hello> My husband was recently diagonesed with psc about a month ago. > suggestions or any feedback. My husband is 44 years old.> > lost and confused> > > >