H

[Guest guest]

H,

I would also like a copy of anything RP related and I agree with you too.

There is no excuse for this as far as Gloria is concerned. Doesn't her doc

realize what can happen when RP is involved in the throat and trach areas?

There is NO EXCUSE for her doctor's behavior on this. None!!

Thank you for anything you can send my way relating to this. I've lost all

my RP files and need any and everything I can get my hands on now.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>

I am still ready to spit tacks I am so angry about what has happened to

Gloria.

I am sending her a get-well card and am enclosing six pages of instructions

for her family to start keeping a notebook that will help her in the future.

I outlined what should be in it, what to write in your medical history, and

where to find some of the extra stuff like research articles and tutorials

to

print out on the internet. Also told them what to do with the info once

they

have it gathered -- how to use if for every ER visit and for every new

doctor. It is based on what I ran into in the beginning until I got settled

in with my docs.

I also told her husband some tough words to use on her doctor to get her in

hospital where she belongs. I sure hope he is willing to do that.

I might also enclose a copy of Dr. Jerome Hermann's summary of RP research

in

the package with her card if I can find all of the parts of it I have

somewhere on my HD.

I saved what I wrote and if anyone else feels like they would like a copy,

let me know and I will forward it to you. There is some stuff that is

personal for Gloria but it may help others to understand what I am getting

at

in terms of their own case histories.

H.