Joanne C waiting on the transplant list

Transplant Waiting List....

Joanne Cathcart age 55 , diagnosed in 1982, listed for Transplant in 1997, stable at this time so Transplant on hold.

1.) Diagnosis & symptoms prior to transplant list:  Stage 3/4, edema, varices with one bleed, itching, various aches and such, and of course the fatigue.

2.) Symptoms, any problems and labs while waiting:  I have on and off nausea and itching and edema and the fatigue. Then, every 3 months complete blood labs.and ultrasound at least twice a year.

3.) How you cope with day-to-day living:  Cope well..keep busy..keep happy .exercise..and pace myself around the fatigue.

4.) Any personal advice you have to other PBCers:  Be sure your doc is up on liver disease's..is happy to spend time talking with you and explains everything to your satisfaction. Or find another doc. Learn all you can.you are your best doc and advocate. And...smile as much as possible.

5.) Suggestions for family members and friends in ways of offering help and support:   Myself, my favorite thing is back rubs. Jeff will also take over the cooking much of the time. Most actually. He asks me if I need any help when I am doing laundry etc..and he pitches right in. In the morning he gets me my meds so I don't have to crawl out of bed to take them...he brings in to bedroom and then I can go right back to sleep. He also has gone to every one of my every three month doctor trips and talks with the docs. He knows as much as I do about PBC.... and is learning along with me about my Sjogren's. Most important he is my best friend.