Diagnosed January 2018

What would life be if it wasn’t for a struggle of some type? It has always been that way for me. Some people seem to go through life without a ripple. I’ve given up trying to see where the justice is in all of this. What you have is yours. Own it. Do not let it own you. With conscientious medical care, you can limit PSC’s influence in your life. To illustrate, knowing I had PSC, I crewed on large sailboats, rode my motorcycle, cleared dead trees off property, bicycled, was a private pilot and kept working as a school business manager until I had to stop for health reasons. Yes, some days were completely exhausting. But, wiped out as I was, I inwardly smiled that I had enjoyed life by holding off PSC for another day. Push the limits. Don’t let them build a fence around you that confines you from enjoying life. Follow what your doctors say. Be prudent, but keep that spirit of adventure and lust for life alive in your soul. It is a very healthy approach to keeping PSC under control.

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Dear Jennifer,

I was passed over by family, friends and school teachers who thought my personality to be gentle and someone who was shy and who would lead a quiet, artistic, peaceful way of life as an adult. I was drawn to the very opposite things others thought did not match my personality. I was plagued with fatigue and intestinal problems from early school age. This slowed me down. But, I just got up and kept fighting. Years later, I learned it was because of PSC. But, I fought to be like other kids, though my parents tried to shield me from some of the more strenuous events. My determination to pursue just the opposite of what I seemed cut out for, helped me realize those goals. I became a teacher who had to overcome the fear of speaking in public. When I changed career to become a school principal, I was told I was took kind, not aggressive enough to control people and did not have the natural organizational skills needed. Well, I did it successfully for 24 years. Math was not a strong interest in grade and high school. Another limitation? I fought it and went back to train to become a chief school business official operating three school districts in charge of millions of dollars. I became a labor contract negotiator and eventually a superintendent of schools, a very public and political job. I tell you about these things because they all went against every natural skill and interest I was born with. They became a challenge like a calling that I knew would be tough to do, and would require a lot of change in my life, but I did them to answer that unknown drive, to prove I could overcome.

This weekend, I went to a county government event held in the local junior college. The door to an art classroom was open. I walked in, looked around at the easels, smelt the paint odor and familiar surroundings. What a pleasant revival of memories fifty years old when I was an art student learning what I thought was to be my career. It all came back in those moments. I realized how different my life had turned out. Was the change of direction responsible for my aggressive fight against PSC? Perhaps. But, I think each of us can leave the influence of our past life and rise to the challenge of the day. If it means fighting a dread disease, we can do it. Remind yourself of that, and if you are a believer in God, take heed of the Bible which admonishes us, “I can do all things through God, which strengtheneth me.” You were born equipped to deal with whatever life would through at you in your life. At whatever age you are, you can access that spiritual force. So, you are not doing this alone without others. Use the power of your pen to describe where you are. You are among friends on this forum and will get support.

Best regards


Thank you Paul for these words. I’m Seenie from Moderator Support, and I do not have PSC (I have been gifted with another rare disease). I’m one of the network administrators here and some days, even I need to be reminded of something that I know so well: we are amongst friends, and if you come here, you will get support.

Thank you for your kindness to Jennifer and to everyone here: we do appreciate it. I also really appreciate the sensitivity you demonstrate in prefacing some of your remarks with “…and if you are a believer in God…”. Thank you for acknowledging that, in a very international and cross-cultural community such as this one, not everyone does, and not everyone appreciates the assumption that they do. We try very hard to be inclusive, accepting, and supportive of all of our members.

As an aside, a lot of our members don’t know that we have a very special part of our community devoted to those of like religious mind:
Category Prayer, Religion and Healing Energy. I thought I’d mention it in case anyone on this thread would like to share and contribute there. It doesn’t get all that much traffic most of the time, and I think that there are members who would like to meet there from occasionally.

Finally MzzP, Jennifer
Welcome to our community! You’ve landed here amongst the most knowledgeable, experienced and thoroughly nice people you could ever want to find. I don’t know why I’m telling you this: you’ve discovered that already!

All the best to you, Paul and everyone!

Seenie from Moderator Support

Hi Seenie,
Thank you!

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I saw this quote from a patient who had a liver and kidney Transplant “life is not waiting for the storm, life is dancing in the rain”
So sorry you are going thru this, my husband has PSC, I have seen him struggle with that fatigue, awful acid indigestion, having those Ercp ‘s to unblock that Terrible sludge which would help for awhile then blocking again!
F Y I , we just got back from Mayo Clinic they thought my husband needed a liver transplant, after testing they decided it was a tumor causing some of these issues, he had almost half of his liver taken out and some of his stomach, he is like new man! I realize everyone is different even with PSC but my advise to you if you can go to Mayo Clinic in Minnesota, they are the experts they have really helped my husband.
God bless, best of luck to you.

Thank you for sharing what your dear husband has been through of late with his PSC. I am very glad that the surgery was successful and that he’s doing well. I’m really amazed of what they did amidst the danger of operating on a patient with liver disease. I’m very thankful that you found the right doctors with the expertise to save your husbands life in this instance. Thank you for your contribution to this forum. One thing we desire is to give our patients hope amidst this life threatening disease.

PSC 2011 / Liver Transplant 2015