Meeting a Survivor

Hi Everyone,

So one of the biggest things I’ve struggled with over the past year is the immensity of a diagnosis of PSC. My doctors, family, and friends have been really supportive, but it’s been tough to figure out exactly what this means for my life going forward. With all the information out there, its hard to get that perspective.

Of course, this site (still in its infancy) is meant as a way for people with PSC to get that info. And I’ve got a great story to tell. I actually met someone who has PSC.

I met Jeff this weekend at a friend’s wedding. Jeff is in his late 50s and was diagnosed with PSC over 30 years ago. This was before most modern treatments; in fact, before they really even knew what it was. The doctors were fairly sure that whatever Jeff had, it would mean he only had a few years to live.

Obviously, the doctors were wrong. Jeff lived for 18 years with his failing liver, survived a transplant at a time where the procedure was still experimental, and has lived for nearly 20 more years with his “new” liver. He still takes Actigall, and immunosuppressants for the transplant, but other than that, he was healthy as a horse (indeed, he was in the best shape of all of the “older” attendees).

As Jeff and I shared OJs and Soda Water at the bar, he told me all about his trials and travails, but had one big message:

"You’re gonna make it. If I did, you can."

I’ve asked Jeff to share his full story with the community via a guest blog, and hope to have it up at some point his week. But the main point of this post, for all the new members and people who reach here for the first time, is that you are going to make it.

1 Like

love the post. so well said. I loved it so much I posted it on the Ben’s Friends blog: