My story

[Guest guest]

In a message dated 3/18/2004 10:40:42 PM Eastern Standard Time,

SASNFINNY@... writes:

He said there elevated and I nearly cried my mom and I both because I only

have 2 inches left of my pancreas and they did an ultrasound and my pancreas was

inflamed and now I'm scared because when I got my surgery last year I didn't

know about Dr. Sutherlands surgery until after. If it comes down to it I'm

afraid I might not have enough Islet cells for him to use. And its just been so

hard and I'm to the point where I just want to give up and its so hard when no

one understands the severe pain.

Dear

I believe we have met. You can correct me if I am wrong. Are you the

who attended the pancreatitis symposium last summer? I am Shirley Ferguson

and I met you at the symposium. I have thought about you so many times.

Wondering how you are and if you have any improvement.

You story broke my heart. You have suffered so long and at such a very young

age. But never, never give up. I know that it is so hard to tolerate

the pain but don't ever give up. You are a survivor and you will be helped

some way. I thought at one time I would never be well and pain free from

pancreatitis until one day I read Sue Rebello's Story. Her story saved my life.

I

am so thankful to her for telling her story. I had the pancreatectomy and

islet cell transplant and I am pain free. Have you and your parents ever

considered just talking with Dr. Sutherland and telling him your condition to

learn

what his opinion of your illness and if he thinks there is anything he could

do for you?

My heart goes out to you . If only I could help you in some way.

Please write to me anytime you are sad or have pain. If you have questions I

will

be here to answer them as best as I can. Please feel free to write me and

pour your heart out anytime. I am here to listen and comfort you. You can

scream, cry or say anything you want. I understand your feelings.

Hang in there and know that you are very strong. After what you have

been through you can handle anything. Take care and keep me up to date on

your health. I will keep you in my thoughts and prayers. Love, Shirley

[Guest guest]

Hi, my name is and I'm 16 years old. Since I was seven years old I

would always get that pain where you just want to say God bring me home because

I cant take it anymore. I basically lived my childhood days in the hospital.

Where the doctors and nurses new me inside and out. But never new what was wrong

with me. Through the years I had to fight every time I went in the hospital

because they thought I was med seeking. To the point where I would just cry and

scream in my mom and dads arms as they cried with me. I found it so hard to be

alone with no answers and no one to say oh I know that pain. Years went by where

I went through about 8 different hospitals, had every procedure in the book. And

cry my self to sleep. To the point where I would cry even more because I didn't

want to go to the hospital because I was so scared. They never ever believed me.

Until it came the last day of 6th grade when I was 11 years old. I went to my

cousins graduation. After we all went out to celebrate. The pizza, mozzarella

sticks, wings, all the junky foods. Well 2 o clock in the morning rolled around

me screaming and crying for dear life as I'm telling my mom that I loved her and

that It was time for me to go to heaven with the angels. And she held me and

cried and took me to the emergency room and as I stepped foot in the hospital

and started throwing up bile and nearly fell to the ground. They immediately

rushed me back into the emergency room, by the time they got me back there my

skin was yellow, they couldn't believe it. I was in so much pain I was screaming

at the top of my lungs for God to take me to somewhere other then there that

would make me free of pain. None of the doctors new what was wrong with me, they

just new it was serious. I couldn't even lift my head up I was in so much pain.

Finally the next shift came on of doctors and he listened to everything my mom

told him and he said she has symptoms of pancreatitus, and the doctors partner

said no way shes to young she wouldn't have it. So the doctor said to him well

do you have a better idea and the assistant got the blood tubes. An hour later

my amilayes were in the 7,000's and my lypases were in the 4,000's. The doctors

couldn't believe they were in shock. They ended up blaming it on my gall bladder

which did have sludge so they removed it. So a few months later same thing

happens and my amilays and lypases are off the tracks. This time they didn't

know what to do. So all the procedures started and I cried through every one of

them. I was in childrens hospitals but they don't know how to handle pain when

it comes to pancreatitus. I would just sit there and cry in my moms arms. And it

came to the point that last year I nearly died from being so sick. I spent 6

months in the hospital, they would move me to a different hospital each time

because they didn't know what to do anymore. I spent my birthday, Christmas, new

years, valentines day, St patricks day, all in the hospital. And one night in

the hospital I'm laying in bed and I was in severe pain crying and screaming

with my parents on the side of me. And I remember saying mom grandmom is waiting

for me she wants me to come home with her (my grandmother passed away, but we

were very close) and I said I need to go now mom and I kept saying it. And she

started to cry and she said no you can fight this you can beat it don't

let it beat you. And we both cried and it was the most hardest thing to go

through in my life. After that day she took me out of the hospital because I was

so bad and they weren't helping me. (My medicine in takes were a fetinal patch

of 75 milligrams, 100miligrams of demeral) After going through all of this my

mom found a doctor in St. Louis who specialized in pancreatitus in kids. So we

drove out there and he performed surgery on me January 17th of '03. He cut 3

inches of the tail in my pancreas only to find a nodule and that my bile duct

didn't flow all the way through. So the 6 hour surgery went good and I was doing

good for about 2 months. Then the pain started to come back and I would go to

the hospital and my amilayes and lypases were normal for the whole year, and

that was 16 visits to the emergency room since June of '03. Now I just recently

was in severe pain 3 weeks ago and I went in the emergency room and I said to

the doctor oh my amilayes and lypases they will be normal because ever since I

got my surgery they have been staying normal and he said ok but he had to check

anyway. And when he walked in I knew something was wrong when he looked at me

and said your blood work came back. And I said yea its normal right? He

said there elevated and I nearly cried my mom and I both because I only have 2

inches left of my pancreas and they did an ultrasound and my pancreas was

inflamed and now I'm scared because when I got my surgery last year I didn't

know about Dr. Sutherlands surgery until after. If it comes down to it I'm

afraid I might not have enough Islet cells for him to use. And its just been so

hard and I'm to the point where I just want to give up and its so hard when no

one understands the severe pain. Well thank youDon't for listening to my stories

If anyone has questions or comments be sure to e-mail me back

-

PS: For the ones who are out there going through this speak out and make them

doctors listen to you. Dont give up and let them win.

Annette Finocchiaro

sasnfinny@...