and the waiting game

[Guest guest]

Hi and everyone else.When Barb was finally diagnosed in 84 they

knew very little about PSC they had only given it a name in 1980. The

truth about this disease is IT IS A WAITING GAME First you wait for the

diagnosis then you wait to see what symptoms you will have, then you

wait to be sick enough to get listed then you wait for a cll that they

have a donor. Then you wait to see how you make it through the TX, then

you wait to see if you will reject and then finally you wait for all the

med problems to be sorted out so you can see what kind of quality of

life you have. This kind of waiting is so very hard for the patient and

his family. As I have said before I only pray for strength for Barb and

I. The only way we got through the last 16 years was to live day by day

and try our hardest not to worry about the future. We have always known

the worst case scenario and expect it each time. That way we have always

been able to rejoice in the good times and have the strength to make it

through the bad times. I have not denied Barb or myself anything we

wanted or need to do, whether I could afford it or note. We have taken

holidays , gone for dinner or bought things like games to keep her mind

off the pain. We do silly things like go out for coffee at 3 am just for

the hell of it. I can not tell any of you how to live your life, but if

you want my advise Live it fully, live for today not for tomorrow. There

is nothing you can do to control the progression of the Disease or when

you will get Transplanted. Tell everyone in your life you love them and

then live life the way it is best for you. I think this is a wonderful

group and I am very thankful it exists. I had no one to talk to about

PSC while Barb went through her 16 years of it. Dec first we went out

for dinner to celebrate the second anniversary of Barbs second TX. Love

to everyone from in SNOWY COLD Winnipeg