I was diagnosed with PSC when I was eleven. However, since being diagnosed I have, thankfully, yet to experience any symptoms that are associated with the disease. My parents never talked with me about my PSC, so I just kind of ignored it for the past ten years. I get yearly colonoscopies, periodic bloodwork, and visit my gastroenterologist for my Crohn’s, but that is the extent of my care.
Now that I am out of college, I have started spending a lot of time thinking about the potential impact of this disease on my life. Any time I think deeply about my future with PSC, I tend to feel overwhelmed and upset. I thought that perhaps this joining this forum could give me a better handle on managing my PSC in the future. Given this information, I have come up with two questions.
I want to take a more active role in managing my PSC. I think the first step is to find a hepatologist. What should I look for in a good hepatologist? I live in the San Francisco bay area if anyone has any recommendations.
The second question (or group of questions) is broader and more difficult to answer. Essentially, I’m not sure how PSC should or should not alter my life plans. There are a lot of questions in this vein. For instance, should I plan to stay in one place rather than more to different cities during my twenties? Should I plan to have children? How should PSC affect how I plan for retirement? Obviously, these questions are very personal so they may not be easily answerable, but I appreciate any opinions from others with PSC.
I realize this a lot of questions and thanks in advance for any advice!