Some thoughts on the upcoming conference

[Guest guest]

A week from now, we'll be in Denver

To convene our first ever

PSC Partners conference.

We all have a sense

Of immense anticipation

And hope that this will lead

To support and education

For our great group of PSCers,

And all their wonderful care-givers.

We hope to learn all about livers,

Nutritional supplements, medications,

And liver transplantations;

About organ donor awareness,

And care-giver preparedness:

About inflammatory bowel disease, and bile.

But hopefully, we can pause a while

To laugh and smile,

And get to know each other

In person rather than on-line

(at least that is a goal of mine!).

Thank you Don and Ricky,

For making this a reality.

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

I'll second that!

Lee

>

>

> A week from now, we'll be in Denver

> To convene our first ever

> PSC Partners conference.

> We all have a sense

> Of immense anticipation

> And hope that this will lead

> To support and education

> For our great group of PSCers,

> And all their wonderful care-givers.

> We hope to learn all about livers,

> Nutritional supplements, medications,

> And liver transplantations;

> About organ donor awareness,

> And care-giver preparedness:

> About inflammatory bowel disease, and bile.

> But hopefully, we can pause a while

> To laugh and smile,

> And get to know each other

> In person rather than on-line

> (at least that is a goal of mine!).

> Thank you Don and Ricky,

> For making this a reality.

>

>

> Dave

> (father of (19); PSC 07/03; UC 08/03)

>

>

>

>

>

>

>

>

>

[Guest guest]

, My name is Tina. My husband was just transplanted at University Of Cincinnati. He has a bile leak from duct to small intestine. Has anyone in the group ever had this happen and was done about. The problem with him is that the ducts are threadlike. The options they are giving us is to stent the duct and hope that it heals, open him back up and try to fix it that way which would be difficult because of the theadlike ducts, or be transplanted again. If anyone has any thoughts on this please write back. Tina wrote:

A week from now, we'll be in DenverTo convene our first everPSC Partners conference.We all have a senseOf immense anticipationAnd hope that this will leadTo support and educationFor our great group of PSCers,And all their wonderful care-givers.We hope to learn all about livers,Nutritional supplements, medications,And liver transplantations; About organ donor awareness,And care-giver preparedness:About inflammatory bowel disease, and bile.But hopefully, we can pause a whileTo laugh and smile,And get to know each otherIn person rather than on-line(at least that is a goal of mine!).Thank you Don and Ricky,For making this a reality.Dave (father of (19); PSC 07/03; UC 08/03)__________________________________________________

[Guest guest]

Dear Tina,

I wish I had answers for you but I can only offer you prayers and my

best wishes. I did want to say though, that on the weekends there is

less activity on the posts, so if you don't hear from anyone,post it

again on Monday. I hope someone will have some information for you. I

pray for extra strength to be sent to you to help you through this tuff

time.

Lee

>> A week from now, we'll be in Denver

>> To convene our first ever

>> PSC Partners conference.

º My friends, We have got to make a difference in this disease !!!!

> , My name is Tina. My husband was just transplanted at University

> Of Cincinnati. He has a bile leak from duct to small intestine. Has

> anyone in the group ever had this happen and was done about. The

> problem with him is that the ducts are threadlike. The options they

> are giving us is to stent the duct and hope that it heals, open him

> back up and try to fix it that way which would be difficult because of

> the theadlike ducts, or be Êtransplanted Êagain. If anyone has any

> thoughts on this please write back. Tina

>

[Guest guest]

thank you, All we can do is take it day by day and hope something positive comes soon.Lee Bria wrote:

Dear Tina,I wish I had answers for you but I can only offer you prayers and my best wishes. I did want to say though, that on the weekends there is less activity on the posts, so if you don't hear from anyone,post it again on Monday. I hope someone will have some information for you. I pray for extra strength to be sent to you to help you through this tuff time.Lee>> A week from now, we'll be in Denver>> To convene our first ever>> PSC Partners conference.º My friends, We have got to make a difference in this disease !!!!> , My name is Tina. My husband was just transplanted at University > Of Cincinnati. He has a bile leak from duct to small intestine. Has > anyone in the group ever had this happen and was done about. The > problem with him is that the ducts are threadlike. The

options they > are giving us is to stent the duct and hope that it heals, open him > back up and try to fix it that way which would be difficult because of > the theadlike ducts, or be Êtransplanted Êagain. If anyone has any > thoughts on this please write back. Tina>__________________________________________________

[Guest guest]

,

I attended the Mich Conf on Organ Donation Thursday and it was very interesting. They are coming up with new procedures and new ideas on organ donation. Point is, I have an extra book that has all the presentations in it that I could send you to take to Denver, if you're interested. Send me your address or Ricky's, whoever wants this and Ill get it right out. Thanks, Tim L

Some thoughts on the upcoming conference

A week from now, we'll be in DenverTo convene our first everPSC Partners conference.We all have a senseOf immense anticipationAnd hope that this will leadTo support and educationFor our great group of PSCers,And all their wonderful care-givers.We hope to learn all about livers,Nutritional supplements, medications,And liver transplantations; About organ donor awareness,And care-giver preparedness:About inflammatory bowel disease, and bile.But hopefully, we can pause a whileTo laugh and smile,And get to know each otherIn person rather than on-line(at least that is a goal of mine!).Thank you Don and Ricky,For making this a reality.Dave (father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Dear Dave and Everyone,

I've been too busy to check messages today, but I just found your wonderful poem, which I love. Yes, in addition to all the serious discussions, we will all take some time to laugh and smile and get to know each other in person. Please don't thank me....I need to thank you and Lee for helping us every step of the way!!! Also, the names of so many online members come to my mind who have helped us get started in so many different ways: by donating, fundraising, advising us, writing letters for us, etc. Bill Wise, Deb in Va., Ivor, Omaha Tim, Joan Kantor, Ali, Iowa Mike, Arne, Drasner, Dana....The list goes on and on. (Sorry if I missed your name. So many of you have also helped behind the scenes.) And, this doesn't even mention all of you who keep encouraging us and giving us great new ideas on a daily basis. I also want to thank all of you who believe enough in us and in our shared mission to attend our first conference, when we have no history...I promise that those of you who attend (and today our numbers just hit 80!) will not be disappointed. As an online group, we are a force to be reckoned with. Watch out, PSC!

Thank you everyone!!!

Ricky

Some thoughts on the upcoming conference

A week from now, we'll be in DenverTo convene our first everPSC Partners conference.We all have a senseOf immense anticipationAnd hope that this will leadTo support and educationFor our great group of PSCers,And all their wonderful care-givers.We hope to learn all about livers,Nutritional supplements, medications,And liver transplantations; About organ donor awareness,And care-giver preparedness:About inflammatory bowel disease, and bile.But hopefully, we can pause a whileTo laugh and smile,And get to know each otherIn person rather than on-line(at least that is a goal of mine!).Thank you Don and Ricky,For making this a reality.Dave (father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Tim;

Thanks for the offer of this extra book that has all the

presentations in it of the Mich Conf on Organ Donation. I think

everyone would like to take at look at this at the Conference in

Denver. You could send it either to me, or to Ricky, which ever is

easier for you. Ricky's mailing address is on this page:

http://www.pscpartners.org/RegForm.htm

My mailing address is on this page (p. 2):

http://www.pscpartners.org/VolunteerForm.pdf

Many thanks, and best regards,

Dave R.

> ,

> I attended the Mich Conf on Organ Donation Thursday and it

was very interesting. They are coming up with new procedures and

new ideas on organ donation. Point is, I have an extra book that

has all the presentations in it that I could send you to take to

Denver, if you're interested. Send me your address or Ricky's,

whoever wants this and Ill get it right out. Thanks, Tim L

[Guest guest]

,

the book will go to Ricky Mon. Figured she was closer and would be driving. If you are flying, you probably are already loaded down. Thanks, Tim L

Re: Some thoughts on the upcoming conference

Tim;Thanks for the offer of this extra book that has all the presentations in it of the Mich Conf on Organ Donation. I think everyone would like to take at look at this at the Conference in Denver. You could send it either to me, or to Ricky, which ever is easier for you. Ricky's mailing address is on this page:http://www.pscpartners.org/RegForm.htmMy mailing address is on this page (p. 2):http://www.pscpartners.org/VolunteerForm.pdfMany thanks, and best regards,Dave R.> ,> I attended the Mich Conf on Organ Donation Thursday and it was very interesting. They are coming up with new procedures and new ideas on organ donation. Point is, I have an extra book that has all the presentations in it that I could send you to take to Denver, if you're interested. Send me your address or Ricky's, whoever wants this and Ill get it right out. Thanks, Tim L