Here is the wisdom, such as it is, that I have accumulated along my journey. I hope it helps.
I was diagnosed with PSC when I was 29. I was told at the time that it was pretty well along in its course and we had not caught it early. I was lucky in that I didn't have any real symptoms to deal with. I didn't do much of anything in response to the news. I guess you could say I ignored it for a while and tried not to think about it. Then, when I was 31, I was diagnosed with cancer in my colon. From the beginning, the doctors told me my prognosis was good and I had a pretty good chance of beating the cancer. I am now 43 (it looks to me like I beat it) and am happier than I have ever been.
After the cancer thing (and looming end-stage liver failure in my future) I chose to take a look at my life and decide what I wanted to get out of it before it was over. I figured that there were many things on my list and I had better get started on them.
I have become a runner (I've completed 3 Marathons), a triathlete, a mountain climber, an attentive and loving father, a great boss, and the best husband to my wife that I have ever been. I love my life. I now work to live and do not live to work. My career and my job are important and I work very hard, but my life is not about the job.
I know that someday I will have to face the unpleasant news that my liver is done and I need a new one. I know that a lot of people never get a liver when they need one. But I say there is no point in doing anything other than taking your life into your hands and doing everything you can do to make it the most meaningful and fulling one you can. There are all sorts of things that life will throw at you that you have no control over. Don't worry about those things. Focus on the things you do control, like your actions and your attitude. Be proactive about your life and not reactive.
Besides being as happy with my life as I have ever been, my labs look great (for someone with PSC). I went from having my blood work done every 3 months to now only doing them once a year. My liver doctor is telling me that the progression of the disease has basically stopped (for now).
- Eat healthy food. It just makes sense.
- Get exercise. Your body craves it and it feels good. There are lots of ways to stay active and you should keep looking until you find the thing that's right for you. Don't stop searching until you find it.
- Work on keeping a positive attitude. A positive attitude is a POWERFUL instrument for change. And a negative attitude will surely steal your happiness and your health.
The more you put into your life, the more you'll get out. And odds are pretty good that you'll get to enjoy it even longer because of the efforts you make. That's win-win.
All the best, Andrew. You can do this!