Just diagnosed

I’m 16, and was recently diagnosed with Overlap Syndrome, or AIH/PSC. It all started when I was about to go on some prescription medication for acne, and went and got a blood test. They found my liver enzyme count was pretty high, and that led to a biopsy and and MRI, and the diagnoses. So far, I’m completely symptom free, except for occasionally feeling tired and drained.

I’m lucky enough to live next to Mass General, one of the best hospitals in the world, but the problem is I’m seeing a children’s doctor, and she doesn’t seem to want to tell me anything about the disease and how it affects me. So naturally, I googled it, and basically found out I’m going to die in 15 years, unless I get a transplant, and even then survival isn’t guaranteed.

I know this probably isn’t the case, as I’m young and healthy, and they caught the disease early. However, I’m feeling a bit scared and uncertain.

I want to welcome you to this PSC community. As a newly diagnosed PSC patient you will find this site a very good resource for all the questions that will come up in your mind as you deal with this illness. The very first thing I want to tell you though is that you can continue to live your life, fulfill your dreams and ambitions amidst this diagnosis. PSC generally moves quite slowly in the early years and over time you will see more and more symptoms and have to have interventions to clear your bile ducts from blockages and things like that. But don’t give up on life, don’t think you are going to die in 15 years. If you come to the point you need a transplant, there is great hope you will get one. The awareness of organ donations across the country is ever increasing and there’s one out there with your name on it should that day come. The best thing you can do right now is to educate yourself about the disease. Ask questions here on this forum and we will all do everything in our power to answer you. Regarding Mass General, I did a little research on their web site and they do have an excellent transplant program. I would encourage you to ask your parents to get you an appointment with one of their transplant hepatologists. You need to be seeing a hepatologist, not just a GI doctor. This doctor is a specialist in the diagnosis and treatment of liver disease. Don’t let the word transplant scare you. You are not there yet but you need to be under the care of physicians who deal with transplants so one day should you need one you will be right where you need to be to get that life-saving gift. They should be able to go directly to that department and ask for an appointment or you can ask the children’s doctor to refer you over there. If they refuse, just go over to that area of the hospital and make your own referral. Hopefully though they are staffed with hepatologists even in the children’s area and will be on top of this. Here are a few links for their transplant hepatologists.
Looks like this Dr. Chung would be a good one to try and get an appointment with. http://www.massgeneral.org/transplant/doctors/liver-transplant-team.aspx#3

Let us know how we can help and I wish you all the very best!

PSC 2011 / Liver Transplant 7-2015