Informed Healthcare Decisions

[Guest guest]

,

You wrote, " I had the tail of my pancreas removed [due to Pancreas Divisum]

and they cut out a section of intestine to form a new duct. I wish I'd had the

benefit of a CP patient to talk to back then! "

I cold not agree with you more. When I was diagnosed August 4, 1999, I only

knew one person with pancreatitis, but she was very, very ill. She actually

died shortly after I was diagnosed. So to say I was a bit afraid, was mild. I

did not know what to do, where to go, etc., etc. The following month,

September 12, 1999, I found myself lying on the gurney in surgery having a

Distal

Pancreatectomy. By December 1999, I was insulin dependent. We asked about the

TP/ICT prior to surgery, but were simply told it was still experimental, yada,

yada, yada.

First of all, being a nurse, means little when you are facing a catastrophic

illness. I did not realize that experimental still meant that was an option.

Essentially, I was at their mercy. I just shook my head and said, " Okay? " I

would not say that was exactly an informed healthcare decision. On the other

hand, I do have to admit that I was on a tremendous amount of pain

medication and overwhelmed at the diagnosis, so I am not sure what was told to

me in

laying out my options. It was this experience that brought about the PAI. It

was definitely important to establish a forum for one person with pancreatitis

to speak to another person with pancreatitis.

As a reminder, the theme for the 2005 5th Annual Symposium on Pancreatitis

is " Bridging the Gap Through Informed Healthcare Decisions " . I am psyched about

meeting many of the people that I simply know through their screen names.

And, per your requests, there has been substantial time allotted for people

with pancreatitis to talk to other people with pancreatitis. It will be a lot

of

fun!

Karyn E. , RN

Executive Director, PAI

Indianapolis, Indiana

[Guest guest]

,

This is what has me very frustrated. has seen the doctors at U

of M and has been diagnosed with CP last August - after this horrid

year and now damage to the tail of his pancreas the doctors still say

he is nowhere near considering TP/ICT. I get the impression here

that the sooner the better, especially since he is so young and prior

to this last EUS, he did not have damage to his tail, mostly the

head. Now he probably doesn't have the amount of cells needed!!! I

am angry and says " I really trust my doctor, but I'll talk to

her about it again Thursday " . They want to take out his gallbladder

which now shows sludge, but I am afraid for them to do anything if he

is going to need the TP/ICT for any real help. Wish I knew what was

best????? Bless you for this group - it is teaching me so much. I

wish I could get him to vist, but I think he still thinks he is the

one who will be different and beat this. Wouldn't it be

wonderful. Sincerely ---

In pancreatitis , KarynWms@a... wrote:

> I cold not agree with you more. When I was diagnosed August 4,

1999, I only > knew one person with pancreatitis, but she was very,

very ill. She actually> died shortly after I was diagnosed. So to

say I was a bit afraid, was mild. I > did not know what to do, where

to go, etc., etc. The following month, > September 12, 1999, I found

myself lying on the gurney in surgery having a Distal >

Pancreatectomy. By December 1999, I was insulin dependent. We asked

about the > TP/ICT prior to surgery, but were simply told it was

still experimental, yada, yada, yada.

>

>>

> Karyn E. , RN

> Executive Director, PAI

> Indianapolis, Indiana

>

>

>