Chrissy

[Guest guest]

I had written you back earlier and it didn't post, hance the no

subject one, but didn't realize it wasn't there. Funny things

computers sometimes.

Before they could even give me the ocreotide shot it had to be

cleared through my insurance co. I hope it works, my pain has

gotten considerably worse. he wants to have the mrcp to take

another look before having a whipple. I dont know if I could handle

the whipple. As soon as the words were out of his mouth I was

crying like a baby and my mind turned to mush. Geeze the man had to

go hunt down a box of tissue. What a sap I am.

I have been using slimfast for a while, they have some really good

bars too. I tend to graze through out the day, something small

about every 4 hours. One of my coworkers were teasing me today that

I have feedings like a baby. At least it keeps my strength up. At

home, sometimes I eat and sometimes I dont.

I have an excellent insurance carrier, Cigna MILA. I haven't had to

pay much since all this started 3 years ago, so I guess I am of the

fortunate few. It never ceases to amaze me how some guy sitting

behind a desk with no medical training whatsoever, can determine the

quality and quantity of health care I can receive, or give for that

matter.

How's the wedding planning coming along. Given any more thought to

a professional planner? Actually, all the weddings I was in I was

given an assignment, it was a lot of fun. Even with weddings of

friends and I was not in the bridal party a lot of us still helped

our girlfriends with buffet and bar. It was fun. So you can

delegate some responsibilities to others.

Take care,

Chrissy

[Guest guest]

Dear Chrissy,

Yes, there's always something, isn't there? That's what keeps

life moving along and keeps us from getting too bored, right?

The meds aren't working as well as I hoped. I can't tell if it's the

oxycontin or the oxy-IR for breakthrough. I was doing just fine

until soon after lunch (my daily tuna sandwich and an orange).

The pain started in pretty fiercely and I tried one of the 5 mgs.

Oxy-IR's for breakthrough. It didn't work at all, so I ended up

having to leave my work and lie down with the heating pad. I fell

asleep, and then felt better before dinner after I had slept. I'm

keeping strict records of when I take it and what the effects are.

Perhaps it just means that I need an adjustment in the dose of

the breakthrough med. Time will tell. Tonight has been fine.

Yes, I'm well aware of all the stories about this medication, and I

guess that's what my doc meant by saying that he knew I would

handle it correctly. I surely would never abuse my medication, it

makes me mad every time I hear of someone that does this,

because they make it so difficult for those of us that have

legitimate needs. It's ridiculous to think of using drugs for

recreational purposes when someone like you or I needs them

just to put our pain aside enough to function!

The thing you call the peg I guess is your j-tube? It sounds as

through it's making you absolutely miserable, and I do hope that

you can get used to it or perhaps there's something they can do

with it so that it doesn't cause so much discomfort. I know a lot

of people have had to use them, and I haven't really heard as

much complaints before, so I'm wondering if there's something

not quite right with the way yours is set up. You're a strong

person, and not one to complain needlessly, so that's why I'm

suspicious.

I don't know if you will have a chance to read this before you see

your doc tomorrow, but if you do, I was going to suggest that you

take a tape recorder with you, and ask if you could tape

tomorrow's discussion. You know it's difficult to remember all

the things our doctor's tell us and talk about sometimes,

especially with our heads fogged up with pain. I know that when

I'm in pain I only retain about half of what is said to me...the rest

of it just vanishes off to the unknown. I got a fine little recorder at

Staples that I use quite a bit when I need to save verbal

discussions or information. If you don't have one you might stop

for one on your way into town for your appointment.

Please let us know what the doc has to say and what the plans

are. I'll be praying for you, and extra prayers that the good fairy

will come and take away that pain that's consuming you so much

now. Make sure you tell the doctor about this, and the pain from

the peg. You'll be in my thoughts.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

Chrissy,

It doesn't inspire the greatest confidence to know that the doctor wasn't sure

whether or not you had a stent....yet I suppose he works on so many patients

that sometimes he could " disremember " and need to consult the chart

beforehand. I know we all feel with our doctor's that we are the only one they

treat, and that our case is the most important, etc., but we need to be

realistic

and remember how many patients these guys actually see each day.

Especially somewhere like MUSC, where everyone in the southeast is

knocking on their doors for medical care.

I do hope that the pain was from the stent, and that the darn thing is long

gone. Having another ERCP at this point isn't something to look forward to,

you need to have as little disruption as possible, and be in a healing mode to

prepare for your upcoming surgery. I've thought about you so much these

last couple of weeks, and everything you're going through and sure wish I

wasn't so far down the coast. We'll have to get together sometime while I'm

up there, and I'd love to meet your girls.

Hey, Chrissy, just a couple degrees lower and you might get to see that snow

right here that you've been mooning about. Trust me, snow in our Carolina

coasts is no fun! I had Christmas cards made up from the blizzard we had in

'89 and still send them out to friends. It shows our Christmas banner draped

over the snow covered unplowed street and sparkling, ice encrusted spanish

moss draping off the live oaks. Another photo of the piers of our new house

sticking up from the ground topped with several inches of fluffy snow. After

the rain and temperatures we had last night it almost happened again!

I hope you are feeling better today. Did your trip into town to see the doctor

wear you out? When will you know whether or not the stent is there or not

there, and if they'll have to get it out if it is?

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

http://www.pancassociation.org/anthology.htm#Heidi

Note: All comments or advice are personal opinion only, and should not be

substituted with professional medical consultation.

[Guest guest]

thank you so much Chrissy. I've been a busy little bee today! We

went and applied for our marriage license! yeah. Kev had to go

back to work, so then I went and picked out our wedding rings!!

that was so exciting. It was truly a wonderful feeling! I actually

forgot for a moment how sick I was and how bad I hurt. It was still

there, I just wasn't letting it ruin my moment! My pre-admission

tests are Monday, so I'll let you know how it goes. I'll try and get

on and let you know on Tuesday, but it may be Wednesday since Monday

will be a whole day affair and will of course drain me beyond belief.

How are you feeling today? hope well. good days ahead...keep the

faith..

Rhonda

[Guest guest]

Hi Chrissy,

I think we should all have a will in order anyway.....I definitely

want people to know to whom I wish to leave my debts!!!.....but have

you been reading the comments by Shirley and by Keri Beck? Keri

sounds fantastic, doesn't she? I'm sure they will help you to feel

positive about things.

You will be able to return to your career when you have this

operation behind you. Latest news?

I am not too bad at the minute although I have bad hours and bad

days from time to time.

I'm thinking of answering Heidi's questions on pain patterns even

though I'm not on painpatches or morphine.

I had an e-mail a few days ago from someone in the UK who has had CP

for 15 years. 10 years ago he was on morphine and needed valium etc.

to help him cope with this. He's been off these pain meds for a

number of years now and has been told by his panc specialist to

expect a pretty normal life and life expectancy. This is despite the

fact that he has a lot of calcifications. Maybe he's approaching the

burnout stage. He doesn't even sem to need enzymes which seems

amazing.

Keep on hoping. Things change.

With love,

Fliss

[Guest guest]

In a message dated 3/19/2004 6:12:38 PM Eastern Standard Time,

cdrrn@... writes:

Thats good to know about the boys pancreas being sent out. Do you

know if the transplant was successful though?

Chrissy, the boys surgery was very successful. He was well the last time I

spoke to his mother. He had his surgery done back in 1998 or 1999. His mother

was concerned since the doctors at Childrens Hospital left a small piece of

pancreas in. She told me that she was concerned that one day he might

develope cancer from the small piece of pancreas. At the time of his surgery

Children's Hospital had never done a pancreatectomy and they were very

conservative.

They had to send the pancreas to MN due to the fact that they didn't do those

types of surgeries and didn't have the know how or equipment to harvest the

islets.

Some of the people that I know who have had the Whipple surgery and are left

with pain and attacks decide to have the pancreatectomy. By having a previous

surgery on their pancreas (Whipple etc.) they are left with slow motility of

the digestive system. I have forgotten the medical word for it but I am sure

you know it. I know that word so well but right now and most of the time my

mind is blank. LOLOL I am getting very old. LOLOL Love, Shirley