and book

[Guest guest]

Hi ,

That book was written by a person on cystic-l, her name is somebody and

shes a pwcf. Check out the " CF Shop " at www.cystic-l.org i think that is the

address. Also for kids books you might want to email/call Grandmom Bev. Alot

of those books are provided through one of the drug companies and are

complimentary. I have seen one about Mallory (?) I forget the name and one

called " Big Pats Little Pats " and some others. We used to have this really

cute one about a mouse. Let me look around and if I can find it I'll donate it

to you, I may have some others around here too. If you're ok about sending me

your snail mail addy.

About docs/nurses lurking, well a couple years ago our CF nurse practitioner

subscribed to cystic-l. I liked her just fine but she worked for/with the evil

CF doc we already didn't like. I used to refer to him as Dr. DH (stands for

dickhead) anyway, I am not sure what I wrote about him but I doubt it was very

complimentary. We went through much trauma such as the tobra toxicity/ICU thing

I already wrote about. then this man had told me !!in front of my child!! that

" I had had a 50/50 chance of loosing my daughter there in Nov. " (the tobra

thing) and a diifferent time he said " every other CF patient I have seen with

this type of kidney damage has been dead within 2 years " He said that little

gem in front of her too, in her hospital room. Needless to say we all despised

this man. I think hes truly evil and I dont know why anyone continues to go to

that center. We had a big horrible meeting with all 's docs, the social

worker and I don't know who all(probably the maintenance people for all I know)

and after that seeing that we could not continue to work with this center we

changed. But before that he had told me that if I ever had my daughter admitted

to " his hospital " again for whatever reason he would discharge her the next day.

he didn't think Ang was sick so he refused to treat her. We changed centers

that May, and guess what? At our first visit to the different CF center she was

admitted for IV tuneup! It was about the only time I was thrilled to have her

in the hospital. Well I have gotten off track here again, oh well it's a Sunday

.

And Ang is still asleep but shes coughing. Hopefully shes ok. Yesterday we

went to see " The Runaway Bride " . It is really cute. )

later! love you guys!