Encouragement

[Guest guest]

A few weeks ago I talked to a woman named Barbara who has had PBC for

about 30 years and had a transplant a few years ago. She is the founder

of the PBC/PSC support group in the San Franscisco Bay area and is over

70 years old. When I spoke to her, she was still ill from surgery she

had to correct a transplant related problem. Yet she talked to me for

nearly an hour. She worked hard for many years to get her group

together (without using internet or email.). She has seen members die

and get transplants. Others, like her, have lived for decades before

needing transplant. She told me that no matter how sick she is she

keeps attending meetings and doing fundraisers. She gave me a swift

kick in the behind and insisted that I work to organize PSCers and raise

money, not for myself but for future generations.

I was diagnosed in 2001. In early 2005 I retired because I was too

fatigued to work but otherwise I am okay. Like many other PSC patients,

I spend a lot of energy worrying how long I have before I become

seriously ill. I'm lucky that I am an old fogie compared to the many

children and young adults who have PSC. But, I still needed that verbal

kick from Barbara to understand that we must plan for a long productive

life ahead of us. Fatigue and illness slow you down but, you must, as

Barbara said, do what you have to do. Since I talked to her I feel less

fatigued and more optimistic. She showed me that even when you have

health set-backs you can keep on going. I have learned from Barbara

that we should all assume we have many years ahead of us.

The people who participate in this support group are great. They put so

much into helping others with emotional support and information. I

just wanted to contribute this bit of wisdom from Barbara, especially

for those of us who are newly diagnosed or who are having a hard time

imagining our futures and planning long lives. I also pray for many

years of life for people like Josh and Deb who are now facing a big

fight for their lives.

(Sacramento) dx uc and psc 2001.