Re: New to the group- reply

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Cindy

Everyone has different experiences with PSC. I was diagnosed with liver disease after the birth of my daughter in 1981. It was a wrong diagnosis of PBC, and then found out it was PSC 15 years later. It didn't make much difference, because I was not having any symptoms. After moving and connecting up with a better doctor, I got some urso and also by that time, the UC was showing its ugly head.

21 years after dx, I received a new liver at the University of Michigan hospital and have been doing well, pretty much. Life settles into a "new' normal after tx, and that is just fine for me.

My advice to you is to find a GI doctor that you like and that is knowledgeable about PSC, and to gather information on transplant centers in your area. It might be many years before you need a tx, and you might never need one, but having a transplant center overlooking your care is a good thing. For 8 years I lived on the shores of Lake Superior and traveled 500 miles to U of M twice a year for tests, ERCP etc. and then moved closer when I started getting sicker. Fortunately that meant moving in with my Mom who lives 45 min away from the hospital.

Things work out with planning. Don't be sick until you have to, be aware of insurance issues, work, enjoy family and friends and enjoy feeling okay. Continue striving toward your goals, and be informed.

keep in touch and take care

MizKit, dx PSC 1981, tx 2002, ileostomy 2004, two children-26 and 21. Doing ok in Michigan