URSO

[Guest guest]

Hi Everyone and thanks for the positive comments re: my posting yesterday.

Joanne asked me to tell " my PBC story " , so here it is in a nutshell.

On my 40th birthday in May 1992 I had major abdominal pains. Labs were

drawn at a dr. appt. and they discovered my liver blood tests were abnormal. I

had an ERCP and abdominal ultrasound and it was concluded that I had

gallstones. I had a laparascopic cholecystecomy and liver biopsy in July 1992.

My GI dr. determined I had some sort of liver disease, but I was not

diagnosed until October 1992 after my records were reviewed by an expert in the

field. I was horribly frightened and so afraid I would not see my only child,

a

son, grow up. I sure proved them wrong...he is now a college junior, 21

years old and one of my best friends, along with my husband.

Immediately upon diagnosis I was prescribed Actigall by my HMO dr. and have

remained on that drug for 16 years. A year ago at a local PBC support group

meeting, Dr. Kris Kowdley, a renowned PBC expert, suggested that many

patients were being underdosed with URSO and recommended increasing the dosage.

With my HMO doctor's blessing, I increased my dosage to 1800mg daily, rather

than the 1500 mg. I had taken previously. For the first time since diagnosis,

my liver functions are normal! I am so pleased and grateful for that. I have

itching, tummy upsets, sleep problems/fatigue, but they are manageable.

With a new lease on life, I was able to decrease the dosages of the

antidepressants I have taken for years, have a new spring in my step and am

living as

full a life as I can. We are blessed to be able to travel, be active

physically, be involved in liver disease causes and other service organizations

and

to have a wonderful circle of friends who " get it " when we need a little

morale boost.

Since the very first PBC conference in 1999, I have had the privilege to

assist the organization with the planning and execution of the meetings, attend

most of them and have met a whole new group of friends and supporters I would

have never known had I not had autoimmune liver disease. Also, I jumped in

locally and we have a great PBC family in the Seattle area who meet when we

can and hold one another up. Just next week we are having a no-host brunch and

speaker. But the real reason for attending is a mini family reunion. Just

when you think you have sunken to the lowest point, a PBC friend is there to

pick you up, if you just ask.

Surely someday the researchers will have more answers. In the meantime I

just keep keeping on and be realistic about my disease and it's limitations,

but don't let it take over my life.

Never give up! I am living proof that there is life after diagnosis.

Hugs,

Anne V. Wash state, stage 4

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