Baton Rouge, LA Contact Needed

[Guest guest]

I just got off the phone after speaking to a woman with pancreatitis. She

has been diagnosed for ten years. I am the first person she has ever spoken to

that has pancreatitis, and therefore, actually understands. I know exactly

what she is talking about. I remember the first time I spoke to someone with

pancreatitis. I cried. As much as family and friends understand and love me,

they don't get it. They can't.

At any rate, Vicki, who gave me permission to share her information, is much

in need to connect to someone locally. Like all the persons on the Telephone

Support Group, she does not have a computer. God love her, do not know how

they survive. I know they deeply depend on others to call them, though. A

friend who does have a computer came across our phone number, , and

encouraged her to call. She did and 1 1/2 hours later I finally told her to let

me hand up so I could get a brochure and other information off to her in the

mail, whew!

Vicki lives in Baton Rouge, LA. She has 'pancreatitis', unsure if it is

acute or chronic, has a pancreatic mass, inaccessible by ERCP, but visualized on

CT Scan. They are unsure if it is solid or a probable pseudocyst. To

complicate things she also has atropic gastritis with gastric bleeding. Her

weight is

a concern, as she is now down to 82#. She says she asked her PCP about tube

feedings or IV fluids, but she says he isn't sure what to do. She says he

keeps telling her to ask her GI, who is at Tulane University. She had someone

she

felt was knowledgeable, but a while back relocated to New York. Since that

time, the other GI staff members, seem to dismiss her concerns, and says,

" Well, we'll monitor you and check on you next time. " In the meantime, she

says,

" Well, what am I supposed to do between now and then. I cannot lose much more

weight. Can't you operate? " She says they say, " Your low weight places you

at too high a risk for selective surgery, since it is not life threatening

right now, we cannot do invasive surgery and laporascopic surgery would not

work. " She says, " ...not life threatening right now? How sick do I have to

get? "

As you can imagine this stress isn't making anything better. Her husband

died two years ago of surgery, and for those who are widowed, you are aware of

all the logistical things involved in this; bills, home, etc., etc. She is on a

COBRA since her husband's death, but now she will be getting Medicare and is

forced to terminate that COBRA. Medicare, as most of you may know, now has a

pharmaceutical program, effective November 2005 (or thereabouts)? She

requested and received a copy of Medicare B's drug formulary. They do not cover

any

analgesics, antianxiety, or other common medications required by

pancreatitis patients. That is a huge stress as well.

Vicki is a 58 y/o bright, well-versed, friendly woman. We currently do not

have a Louisiana State Chapter Representative or even a Greater Baton Rouge

Area Representative, so if you are interested in helping or being a friendly

ear, please contact me either by email at: _KarynWms@..._

(mailto:KarynWms@...) Or by toll free phone at: . It would be

preferable if

you live in Baton Rouge as face to face support and contact could possible be

made. However, anyone, of course, who has free long distance who could

initiate the calls, would be wonderful. I gave the brief history so that you

may

know if you have any of that in common, though, sharing the challenges of this

disease, in itself, is sufficient enough.

I appreciate everyone who has been willing to go beyond the message board

and reach out to those cut off from all that the cyberworld offers. Can you only

imagine how lonely that must be?

Karyn E. , RN

Executive Director, PAI

Indianapolis, Indiana