reply Ronda, with references to torsten heather and M

[Guest guest]

Ronda,

I am sorry to hear that about the culture results.....

and even more sorry to hear that your docs are of the school that they never

need another opinion...that is actually worrisome (it must frustrate the heck

out of you!)

I do not understand why your doc would not agree to send the already grown

culture to LiPuma's lab; afterall, it is a CFF funded research grant! (not

like its some fly by night operation?!) They are known in the CF doctor

world as the Cepacia lab.... Hmmmm, that really is kind of weird to me.

But, hey, the last thing I want to do is get too pushy, or tell you how to

handle your docs. Torsten, , M (angela's mom) any advice her

for Ronda? What would you do in her shoes? What would you all think of a

doc that won't allow a culture to be verified by LiPuma's lab? I remember

just last year that s sister told me they sent one of her cultures off

to LiPuma's lab and learned it wasn't cepacia, but Malto. or I think my

memory serves me correctly.... I don't think that her family had to insist,

that it was their docs idea even? And in our case, we were gonna ask, but

when we called to ask him to, the doc beat us to the punch by saying he'd

found out about this lab, blah blah....

Geez, hope someone else (who hopefully doesn't have as strong of feelings on

this one as I do) has some wise input here.....at this point, I am better

left with my mouth shut I think....

I hope the IV's and the picc are going ok!

Take care,

Jen