Primary Sclerosing Cholangitis (PSC) - Online Support Group

We are patients living with primary sclerosing cholangitis (PSC), here for you!

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.


Views: 104

Tags: PSC, transplant

Comment

You need to be a member of Primary Sclerosing Cholangitis (PSC) - Online Support Group to add comments!

Join Primary Sclerosing Cholangitis (PSC) - Online Support Group

Comment by Scott Orn on October 19, 2010 at 2:05am
love the post. so well said. I loved it so much I posted it on the Ben's Friends blog: http://blog.bensfriends.org/post/1349505712/youre-gonna-make-it-if-...

Please Like Us On Facebook and Follow Ben's Friends On Tumblr and Twitter

Follow Me on Pinterest

To Support LivingWithPSC.org, Click an Ad. Or Two.

Advertise With Us

Blog Posts

Facebook Feature Supports Organ Donation

We never realize the value of organ donation, until we're on the receiving end.…



Continue

Posted by Armando Abrero on May 27, 2012 at 10:40pm

May 2012 LivingWithPSC Community Newsletter

Dear Friends and Family of LivingWithPSC,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…

Continue

Posted by Ben Munoz on May 26, 2012 at 8:00am

Events

© 2012   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service