Re: I'm sorry ...tx support...

[Guest guest]

Dear Barb,

Thanks for your post. At the risk of repeating myself and boring all of us I will repeat what I originally said - I have no intention of leaving this group. End of story! I have gained a lot of knowledge from all of you and will continue to. I will also continue to be there to add in whenever I feel it appropriate. Sorry guys. I will continue to work for PSC and a Cure. I ,after all, have a vested interest in it.

The lack of compassion thing is clear to me when I read peoples responses - they are still coming at the problem from their view point and needs. I just want folks try and come at this issue from a different standpoint. We are not all in the same space. We all require different solutions. When a group as a whole cannot or is resistant to serving individual needs we have a big problem.

As for starting a new group so fast, that is not carved in stone. We will need to work the details out. However, I think that the decision will have to be left in the hands of the folks that need and want it. If we went by the group decision I really don't think a TX support would exist.

Thank you for all of your hard work for this group. Your commitment really shows.

Merry Christmas to you as well.

Ali

[Guest guest]

No need for an apology Barb and don't go into lurk...we love you here

and know how compasionate you are. I think sometimes people forget

that we are writing our feelings, concerns and thoughts on this

impersonal thing called a computer. It doesn't show the smile, give

the hug or let us hear the voice of compassion. As for me, I think a

post psc tx group is a great idea, but that doesn't mean I ever

thought of leaving this group. Since Todd's transplant I have lurked

on the liver transplant yahoo group, but never participated. This

PSC support group is my home and I would never move out. I am not

only here to receive support, but to also give it.

Remember we are ALL: Together in the fight, Whatever it takes!!!

Joanne (mom of Todd)

[Guest guest]

Barb,

I'd like to repeat Joanne's request for you to please not go into lurking

mode. You are such an integral part of our online group!! I agree with

Joanne that the impersonal computer is often a source of serious

misunderstanding. I know that there are times when I have unknowingly sent

the wrong message out. Without the nonverbal cues and important tone that

we rely on in personal conversations, it is so easy to convey a different

message online than we had planned. We all know that our online group is a

godsend to all of us, whether we are active participants or lurkers.

Without the group, we would have no contact with other PSCers, and that is

what keeps us all going, knowing that we have a varied group of

PSCers/caregivers who understand and empathize with all of our concerns,

fears, etc.

Two messages that I heard loud and clear in the last few days were: 1. the

post-transplant people really want/need an additional forum where they can

freely pour out their hearts to other post-transplantees and 2. the

pre-transplant people want/need the wisdom of the post-transplantees and

hope that they will remain in our group. It looks to me like the solution

will work out for most everyone. Our group will not become fragmented,

since the post-transplantees have ALL said that they don't plan to leave the

original group. They all know how much the rest of us learn from their

experiences and support. I'd just like to thank EVERYONE for continuing to

make our group such an important part of my life.

Ricky