Hi, my name is Jill and I was first diagnosed with PBC in early 1994. I have been married for 25 years and my husband's name is Rick. I have 2 boys Austin 18 and Craig 15 and live in Lake Mary Florida. I hold down a full time job and travel extensively for my company all over the country.
When I was diagnosed I was already at stage 3 - stage 4 liver failure. I was on Actigall, cochicine, lasix, questran and some other drugs to reduce my heart rate and bleeding. I was sent to Miami to participate in a drug trial, the drug worked great for the itching, but no further availability. The drugs I was taking had no real effect in slowing down the progression and by 97 I was in serious condition. Several bleeds and bloating along with high bili counts. I was placed on the transplant list in the end of November 1997, and was transplanted on my son's 15th birthday 12/10/97. I was the only one on the list with B positive blood in the Florida region at that time. I was to be discharged about 1 week later when I started massive rejection. They put me on a strong drug called OKT3 and basically I was heavily sedated for about 10 days. Finally, one morning my levels dropped to normal, my color was back and onward to recovery. Then the unexplained fevers occurred around Christmas and still no discharge. I was finally discharged from Shands in Gainesville the day after New Years, and returned back to work full time in February. Since then my yearly biopsy's and blood work was excellent. Last December during my biopsy, there was some concern. My doctors then informed me that they have since found the disease can reoccur. I don't want to depress anyone, but this was somewhat disheartening to me. They are linking my PBC to the autoimmune system, so
in theory I can understand the reoccurrence. I just had another biopsy done August 3, and all though all my liver numbers and functions are the best ever, and the early biopsy results were good, my doctor suspects the stain will come back with early PBC. She has placed me back on Actigall/Ursodil at about 750 mgs a day. I am also taking Prograff for rejection, along with calcium. She isn't worried and has indicated that I should be okay for 20 plus years. I have taken the attitude of if the doctors are not worried at this time, then I won't be either.
All - I want you to know that my life has taken on new meaning and I embrace each and every day to it's fullest. I make sure I set aside time for me even with my busy schedule - and we (my family) are doing more things together now. My son's are my greatest pleasure and are supportive. My husband - well he is a worry wart and just wants me to slow down. I thank the wonderful doctors at Shand's and the Mayo clinic for their perseverance and assistance and hope all of you have doctor's and staff that are equally supportive. I HAVE NEVER FELT BETTER. I am glad I have found an organization to relate what we go through and was surprised to find so many people
Thanks,
Jill R