Primary Sclerosing Cholangitis (PSC)

@jacinta, I hope that you will find the answers that you are looking for when you visit Mayo. If you take your questions, they will be able to give you answers. I am also happy that our members have been able to help you to feel better about your surgery.
I continue to learn and to be amazed by the inspiring stories shared by out members. I hope to hear more from you.
Sending you a hug and prayers for your journey,
Rosemary

Thank You so much. Im on the bus to Rochester from the Airport

@jacinta, Stay warm:-)
If you get the opportunity, You might want to check out the Gift of Life House - for transplant patients.
Rosemary

@jacinta, I want to send you this note to say that I'm thinking about you. I sincerely hope that you are feeling okay.

I want to share with you a conversation that is currently active among some members who are in the process of being tested to be living kidney donors. Even though you are a liver patient, I feel that you might enjoy reading or participating in this group - different organ + similar concerns.
If you click on this link, it will take you to the discussion, "Living Donor". https://connect.mayoclinic.org/discussion/living-donor/

Let me know if you need help getting to it.
Rosemary

If you have Primary Sclerosing Cholangitis (PSC), or if you are a family member or friend of someone with PSC, then you must have lots of questions about the disease. I know I did when I was diagnosed with it in early 2000's, and I still do have lots of questions. I am a transplant recipient, and I remain dedicated to sharing my own experience to walk with you, to talk with you, and to hold your hand through your journey. But there is more that I have to share with you -

Mayo Connect has created a new Page that is dedicated to Primary Sclerosing Cholangitis (PSC). You can follow the PSC page and stay up-to-date with news about advances in PSC research, clinical trials, and available resources.
https://connect.mayoclinic.org/page/psc/

What is your PSC experience?

Hi, Jacinta. In case you didn't know, there is a great resource via PSC Partners. Not only is there good info. on our website (pscpartner.org), but we also have PSC discussion groups on Facebook. That would be a great place to get additional opinions. @jacinta

I tried logging on and had difficult in getting into it. I’d love to know more as I have it since 1989 . . . with bad days, good days . . . many, many ERCPs

Welcome back, @jacinta
Here is the link to the PSC blog by Mayo Clinic experts https://connect.mayoclinic.org/page/psc/
The blog is right here on Connect, so you don't need to login again.

We would love to get an update from you. You mentioned that you had a donor. Is a partial transplant still in your future?

Sorry. I forgot the "s" http://www.PSCPartners.org

Hi, jenchavez. I would like to welcome you to Mayo Connect. My own PSC history is what brought me to Connect. After my transplant in 2009, I was looking others who shared my own transplant experience. That is when I discovered Mayo Connect. I enjoy being able to learn from others and to share transplant experiences that we have in common. I am in awe over the amount of caring and support transplant patients offer to each other. I appreciate what you have shared about the PSC Partners. We PSC'ers know what a lonely disease we share.
I am also excited to share the new PSC Pages that the Mayo Experts have recently opened. Have you seen it yet? https://connect.mayoclinic.org/page/psc/

jenchavez, In addition to your group affiliation with the PSC Partners, would you share a little about your own personal connection with PSC? Are you a patient? Cargiver? Family member?...

I look forward to hearing more from you.