Hi Annmarie,
We welcome you to this site and encourage you to ask all the questions that you need to ask. We are here for you to help and guide you in any way we can as you help your daughter in dealing with this disease called PSC. One of the most important decisions you will make right from the beginning is that you have her under the care of a transplant hepatologist. This is a physician that specializes in the diagnosis and treatment of liver disease. It is preferred that he/she be associated with a hospital that does liver transplants as they will be able to help her get on the transplant list when that time comes. A regular GI doctor is not the doctor generally to be treating her PSC, so that is one of the first things. Although there currently is no cure for PSC there are things that can be done to help ones quality of life. These involve medications like Ursodiol which helps thin the bile so that it can flow better, and then there are medical procedures that will need to be done from time to time like the ERCP procedure where the doctor will go in endoscopically and go up into her bile ducts to dilate them and clean them out good to allow the bile to flow again more freely. This is not a cure but only a temporary fix and may have to be repeated from time to time. As the disease progresses, this procedure will need to be done most likely more frequently. Again, with an ERCP you need to be seeing an advanced endoscopist that does this every day of the week, not your GI that does your colonoscopies and upper GI’s. This is an invasive procedure and if not done in very skilled hands can lead to serious complications, but it is a very helpful tool in patient quality of life care. I would also encourage you to read through all our different topic sections and then reply to any you wish further information or wish to comment on. Our members are always willing to contribute valuable advice to one another.
One final word of advice I would give, PSC is a disease that the patient needs to be very open and frank with their family about. Someone needs to go with her to each appointment to be her advocate. There is a list of questions from another recent post that I would encourage you to read of things to ask at the appointment with the hepatologist. but she will need all your support. You may not always understand why she is going through what she is going through but you need to support her. As things progress, she may not be able to stand the smell of certain foods, eating certain things, etc. This is all normal to the disease process. Try and encourage a regular daily exercise regimen even if it’s just 30 minutes a day of walking, keep her protein levels up to maintain body mass and weight as things progress as well is all helpful down the road when transplantation becomes necessary. Take care and keep in touch.
Here’s that link with the questions for the doctor - Questions for New PSC Patients to Ask
Mark
PSC 2011 / Liver Transplant 2015