RE: marc/marci Wait - please

[Guest guest]

In the ---Original

Message--- From: Marci/Marc

He wrote this: In ,

" Barb Henshaw " barbhenshaw@... wrote:

But what followed the wrote: was

NOT written by me! Marc left

out what I had written in his reply.

I’ve been receiving private messages from people about something that

Marc and Pam (not me) wrote and I want to clarify that. I don’t have a dog in this fight!

What I wrote was: I thought

the post “sounded” a little funny too, but I don’t believe

for one minute he meant it the way it typed. A positive attitude is good thing. Marc,

I was supporting you & trying to clarify what you said! One line in your original post read

differently than the way I thought you meant it to, so please leave me out of this

fight! It seems Deb is the only one who

understands who said what.

Now, on to what you

have directed to me…..

I will direct this next paragraph to Barb…..I believe the data from several of the Hepatologist I

have visited, and the

other posters who quoted their Hepatologist are better

informed than you.

Whoa Marc, chill out

dude. Your attack on me is totally unwarranted. I never said I was all knowing or even

referred it. I didn’t even speak

to you! Don’t attack me.

That was my point about the

general herd of you who so quickly refer to the 10 years statistics about transplants….. In

my view you are propagating the negative and ignoring the positive

Why not present both sides of the picture….. instead

of the gloom you perpetuate by presenting only half the picture.

“General herd

of you” - huh? I don’t “propagate the

negative”, never have & I don’t think

anyone in this group ever has! My

son is listed & near the top, we’ve seen more than our fair share of Hepatoligist’s, as

well as every other doctor you can name.

I tell people that my son was dx when he was in end stage - almost 8

years ago! That’s an amazingly

long time to have cirrhosis & do as well as he has during all those years. Even the families that have lost a loved

one remain positive about finding a cure one day. I think you’re off base with this one.

I have never

used the 10 year statistic. But….

most doctors do! So it’s

reasonable that some people in this group would repeat what doctors say or what

they read on the internet. After

all, isn’t that what you’re doing? Repeating what your doctor has said.

Apparently, my whole point was misconstrued from my post

You’re 100% right!

A bunch of us thought your wording

was off. That’s why I was

trying to clarify what you said!

You said: If you think that you're destined for liver

transplant just because you have PSC your thought process and deductive

reasoning is erroneous, and your defeatist attitude will fulfill your self fulfilling

prophecy. To some of the people reading, it “read”

very much like you were saying their negative attitude will cause a liver

transplant. “Fulfill your self

fulfilling prophecy” does sound that way doesn’t it?

No one “barrages

them with this 10 year to transplant statistic”. In fact, every newbie

is given hope, we let them know we are here for them,

that they are now part of a new family, that we work day and night for new

treatments & one day a cure. We

tell them to relax, not to believe everything they read. We are positive & very helpful and

you are wrong to say otherwise.

Barb in Texas - Son Ken (33 now) UC 91 - PSC 99

[Guest guest]

yahoogroups. com, "Barb Henshaw" barbhenshaw@ ... wrote: No one "barrages them with this 10 year to transplant statistic". Infact, every newbie is given hope, we let them know we are here for them,that they are now part of a new family, that we work day and night fornew treatments & one day a cure. We tell them to relax, not to believeeverything they read. We are positive & very helpful and you are wrongto say otherwise. Barb in Texas - Son Ken (33 now) UC 91 - PSC 99 Well said Barb, I was a newbie to this group, back in 2006. My son was diagnosed at age 15 in early 2005, I was terrified and had already read all the

scary stuff on the internet. We had been told at diagnosis, by the director of gastroenterology at the Royal Melbourne Hospital, that the disease was progressive and that Tim would eventually require a Liver transplant. This group most certainly DID NOT foster negative attitudes, and were in fact quick to point out that Timmo may never require a transplant. In the first couple of responses I received I was told about people in the group who had had the disease for 20 plus years and were still doing

well. I do not post often, but always read the posts. When I have asked questions they have always been answered with a positive slant. Thanks to every one on this site for your positive outlook on life, and your generosity with your time and information. P.S. athan, my thoughts are with you. Hope that new liver turns up soon. Penny Mum of Tim (17 in two weeks!!! and living life to the max) UC 11/04, PSC 2/05 Send instant messages to your online friends http://au.messenger.yahoo.com