Re: New member()*

[Guest guest]

Sara, I'm glad you have felt comfort from the group. It seems we kinda have similar age children. Except for my oldest, that is. Our oldest is son is 14, then Nick is 9 and we have twin girls who will be 6 in May. It has been hard for Nick to stop being such a little rough houser. His brother is 5 1/2 years older than him, so you know he is used to being a real rough neck for his age. Also, he has a hard time stopping and resting when he needs to. He just wants to push on through it and play or whatever. But, it makes him crabby. So many people the group have been dealing with such ups and downs for so long now. It is wearing on ones being, I'm sure. You are correct about not being given more than one can handle, but sometimes it is difficult to keep that in mind. I'm glad you found the group.

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> > > >