Whoa! What the heck is this guy talking about? Information is power, isn’t it? Let me explain why my title is what it is.
I have had PSC for 18-plus years and I’ve been part of the yahoo support group and the PSC Partners support group. I have met LOTS of PSCers and their caregivers. I have had numerous physicians, and I’ve been seen at a number of different hospitals. I was on Mayo’s high dose Urso study that was stopped by the NIH before its completion due to toxicity on patients that were symptomatic going into the trial.
What is he getting at? I have had information dispensed by doctors and trial administrators. I have talked to countless PSC friends and acquaintances, each with their own story to tell. Basically, I’ve heard it all as it pertains to our disease. At one conference, we had two doctors on the dais, and one said take Urso and the other said don’t. My point is that you can get caught up in a lot of non-useful information. You or your loved one will invariably have their own unique PSC journey. Are you going to need a transplant? This is not a certainty. Drugs are in the pipeline that may provide relief within 10 years. Will you get recurrent PSC if you have already been transplanted? Probably not. Is cancer going to hit you? The chances are strongest that it won’t.
You can sit at home and read all of the support posts, read all the Google information and scare yourself silly. My original hepatologist gave me a horrible prognosis. He told me I had five years to live.
Is there good information? Yes. PSC Partners Seeking a Cure has exactly the kind of information on their web site that you can use. Remember that PSC Partners always defers to your physicians for the best care for you, the individual. Do you have a good gastro/hepatologist? If so, you should be getting good information from them, and they should be able to answer your questions and include you as the most important member of the team. My main point is that you can stress mightily over so much information that may never pertain to your case. Take each day as it comes. Focus on your family and career and have faith in your doctors. Go to www.pscpartners.org and read the notes from the doctors and researchers that spoke at our conferences. Start with the most recent conference. Gather this important information to help you with your journey. Discard the info that doesn’t pertain to you now. You can always go back to retrieve it if you need to.
Peace and Love, Tim Wholey