Re: TP/ICT QUESTION?? To Lucy

November 13, 2004

> Hi My name is Lucy, i saw your email about your young son. I am so

sorry but gald tohear he is doing good now. I don't know that much

about things yet, I also have a morphine pump still have severe

attacks. My question is what is TP/ICT I don't know> What do they do

to you? How long has he been without pain? Does the pain come back

at times? No more attacks or sometimes? Could you when you have

time fill me in on this and your sons progess.Thank You so much Lucy

Hi Lucy,

I'm so sorry you are dealing with this horrible disease. The TP/ICT

stands for total pancreatectomy with islet cell transplant. Joey had

his pancreas completely removed. The pancreas was processed to

remove the islets and the islets were " transplanted " into the liver

where they produce insulin. He is not diabetic and does not need any

insulin. He has been pain-free since shortly after his surgery, 2

years and 5 months. He had 2 small episodes of unexplained stomach

pain last year (Sep + Dec), that were nothing at all like his

pancreatitis pain. He didn't even take any pain meds at all. Other

than that he has been able to just be a " normal " teenage boy. He

goes to school, plays, eats, just enjoys life. That's something he

hadn't been able to do for many years. But, this surgery is nothing

to take lightly. In Joey's case he was very, very sick before his

surgery and he wound up spending 2 weeks in the ICU. He started out

on a ventilator, and when they took him off, his lung collapsed. He

had many complications that were not so much a direct result of the

surgery, but more because of how ill he was before. He spent 2

months in the hospital and had a very long recovery, but he was able

to wean off the narcotics almost immediately. We consider ourselves

very, very lucky to have such a wonderful outcome. It has totally

changed our lives.

Suzanne

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