@msgtrebholtz, Jason, Welcome to Connect. I am happy to extend a virtual handshake to you. I am a PSCer. I am thrilled to meet you, because there are not many of "us". I actually joined Connect in 2011 to meet other PSCers after my transplant on 2009 at Mayo in Rochester. I transplanted at age 60 after having lived with PSC diagnosis for around 8 - 9 years. I did not have UC. My PSC (Primary Sclerosing Cholangitis) was discovered when my PCP observed abnormal liver functions in my routine annual labs. I am forever grateful that he immediately sent me to a GI who cared for me until it was time for me to have a consult and evaluation at transplant department.
Jason, I welcome any questions, anytime.

Here is a very special feature on Connect, that I want you to see! The PSC Page and Newsfeed - where Mayo Clinic investigators and their teams are making strides to better understand and treat PSC patients, with the ultimate goal of developing a cure for this disease. YI invite you to follow the PSC page and stay up-to-date as we post news about advances in PSC research, clinical trials, and available resources.
https://connect.mayoclinic.org/page/psc/

Hi @msgtrebholtz. Jason, I'd like to add my welcome. It's so nice when people find Mayo Clinic Connect at the beginning of their journey to help prepare, ask questions and get support. I say beginning, but this is not really a beginning is it? It's just the beginning of learning about transplant. You have vast experience with ulcerative colitis, colon surgery, ostomy and more that I'm sure will benefit other members who are beginning those journeys. I invite you to also follow these support groups on Connect:
- Digestive Health https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
- Ostomy https://connect.mayoclinic.org/group/ostomy/

Your knowledge and experience will be welcome.

Jason, when were you diagnosed with PSC? How is your health today?

Hello Jason! We are the same age. I’m a female though! Had a liver transplant in 2015,mid summer!. I was 47 yrs. old. I’m from Maryland so I got to choose between Johns Hopkins or University of Maryland. Kinda started at Hopkins and ended at University!! Welcome and feel free to “tag along”

By the way “Raowdy Ramsey” is my dog. My name is Ramona. My dog ,Ramsey, is a collie and a present to me after surviving the transplant. He’s been at my side every minute since! WELCOME

@msgtrebholtz Hi, Jason, I too welcome you to Connect, particularly to the liver transplant group. I had my transplant in September, 2016, at Mass General Hospital.
You have already been through quite a lot, that's for sure, but you have a great positive attitude. I am glad things are going so well now.
I agree with you, I wish I had been aware of this group when I was pre-transplant. It is always helpful to have contact with people who have or have had similar circumstances.

@rowdyramsey Ramona, I think you are correct, that tacrolimus must be the best immunosuppressant for liver transplant recipients. It seems to be what everyone is initially prescribed. Then some of us, me included, have problems that require a different immunosuppressant. Tacrolimus was causing my creatinine numbers to be high. We tried battling that by drinking a lot of fluid daily -- 80 - 100 ounces -- but the high numbers persisted so I was changed to sirolimus. That has worked out well for me. I never had any problem with tacrolimus that I felt though, but I have heard of many people who do have problems with it.
JK