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Shirley

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Shirley,

You are such an inspiration. I joined the group not very long before you began

your fight to get the insurance to cover your surgery. I don't know if you

remember me from then. I had my first attack of acute panc in Jan 2000 and

joined the group I think in Feb 2000. You were/are so courageous and I had (and

still have) such admiration for you. It is so wonderful to hear that your

pancreas problems are over. I know you must still deal with the hepatitis and I

have no idea how tough that may be. However, it seems you definitley have a

better quality of life now that you are no longer starving and having the

horrible cp pain.

My doctors insist that my problem is not cp. They say I have recurring attacks

of acute panc. They believe the problem is adhesions blocking the flow of the

bile duct. I am scheduled to see the surgeon my GI is sending me to on

Wednesday. He is sending me to the same surgeon who recently did surgery on his

wife so I do feel I will be in good hands. If my GI is correct, the surgeon

will remove the adhesions and I should have no more pain, nausea, vomiting, and

crazy fluctuating blood sugar! I am cautiously optimistic. I have already

contacted Dr. Sutherland for his opinion. He e-mailed me back within two days.

He said that he has seen my story in other young women with what is called

minimal change chronic pancreatitis. He said about 80% are helped by pancreas

removal. He did say that about 15% end up diabetic and don't get pain relief.

I have made up my mind that I will never allow anyone to operate on my pancreas

because I'm not going to take the chance on losing the islet cells. If it comes

to the point that they are saying surgery is needed on the pancreas (vs the bile

duct) I will go to Dr. Sutherland for pancreas removal and islet cell transfer.

I am very thankful that it is me that I may have to make this decision for and

not my daughter. It would be so incredibly scary to have to make such a

difficult decision for my child.

Thank you for being a pioneer in the search for a cure for cp. Thank you also

for being so willing to share your story!

W

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Shirley,

You are such an inspiration. I joined the group not very long before you began

your fight to get the insurance to cover your surgery. I don't know if you

remember me from then. I had my first attack of acute panc in Jan 2000 and

joined the group I think in Feb 2000. You were/are so courageous and I had (and

still have) such admiration for you. It is so wonderful to hear that your

pancreas problems are over. I know you must still deal with the hepatitis and I

have no idea how tough that may be. However, it seems you definitley have a

better quality of life now that you are no longer starving and having the

horrible cp pain.

My doctors insist that my problem is not cp. They say I have recurring attacks

of acute panc. They believe the problem is adhesions blocking the flow of the

bile duct. I am scheduled to see the surgeon my GI is sending me to on

Wednesday. He is sending me to the same surgeon who recently did surgery on his

wife so I do feel I will be in good hands. If my GI is correct, the surgeon

will remove the adhesions and I should have no more pain, nausea, vomiting, and

crazy fluctuating blood sugar! I am cautiously optimistic. I have already

contacted Dr. Sutherland for his opinion. He e-mailed me back within two days.

He said that he has seen my story in other young women with what is called

minimal change chronic pancreatitis. He said about 80% are helped by pancreas

removal. He did say that about 15% end up diabetic and don't get pain relief.

I have made up my mind that I will never allow anyone to operate on my pancreas

because I'm not going to take the chance on losing the islet cells. If it comes

to the point that they are saying surgery is needed on the pancreas (vs the bile

duct) I will go to Dr. Sutherland for pancreas removal and islet cell transfer.

I am very thankful that it is me that I may have to make this decision for and

not my daughter. It would be so incredibly scary to have to make such a

difficult decision for my child.

Thank you for being a pioneer in the search for a cure for cp. Thank you also

for being so willing to share your story!

W

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