What a lovely young lady!!! Her color is looking much better. Our children are such a blessing to us as parents. You are doing a good job with raising this dear young lady Mollie. God bless you and your family.
Mark
Mollie, a rising bilirubin score is one of the symptoms of liver disease, not just PSC. Itching and jaundice are part of it. When I was diagnosed with PSC, doctors told me I had Stage IV cirrhosis. That was years ago. More recently, people with PSC have said their doctors steer away from using a Stage number to describe how bad you PSC is. I think you should ask some tough questions with the hepatologist and insist they tell you how advanced the disease is. It is hard enough to deal with a new disease without knowing the full extent of the problem. Some people live their whole life with treatment. My case did not go that way. I had a liver transplant 5 years ago and the disease and symptoms are all gone.
Thank you Paul. Since that post our daughter Alana has had more blood tests and her bilirubin is decreasing. Yes, I asked that question about her stage of disease and our hepatologist believes she is further advanced in the disease. Another blood test tomorrow to see where she is at two weeks later.
I agree with all you said. Thank you for your response and I’m soooo glad you are five years post transplant and doing well!! Encouraging!!
Mollie