Hi Margaret,
Thanks for your imfo. Mak has been in the hospital several times in the past few months with pancreatitis, which they say this is abnormal with her being 'PI'. They did a GI Scope to check how bad PI she was. I saw the numbers/results, it was bad.
At one time on Xmas AM they didn't know if they were going to be able to save her, she was so bad, non stop 'bile', fever, etc. They kept telling us over and over she could not live without a pancreas.
There have been doing a world serch with CF and GI, and pancreatic doctors to see how they can help her because she has a bad attack about every 2 to 3 months if not sooner. They said all they can do is pain control and pray.
The head directer said that this has happen in one other case of a 16yr old and the simerlarities were just like Maks. He said , they finally went in and took out part of her pancreas to see if it would help and she passed away within the week, he said it was awful, that her intestines died off and they would never try something like that again. He said as of today they still did not have any solutions, and they have told us over and over , that you can not live without a pancreas.
I am really confused and scared now. I don't know what to think. They put her on Morphine the pain is so bad, when these attacks happen. I don't know what to do. We go to one of the best clinics, Dallas Childrens CF Clinic. I don't know what to think.
If any body else knows anything , I would like to know anything I can find out.
Thanks to all the imformation,,,,,,,blessings karla