I KNOW HOW YOU FEEL , MY DAUGHTER WAS AT DUKE WITH DR TREEM A PED Gastro. she was 16 at the time. he was a jerk. she had been to infectious diease before going to him and was positive with h-pyloric bacteria. had stomach pains, didnt have a bowel movement for 13 days, went to the clinic to meet him, had blood test and urine that one day and the urine was coke colored and the lipase was 500 but the amalace was fine. her liver enzmes waer high. so the next day they called us back and told us she pancreatitist. no one ever sugested cf just said it was probably gall stones had pancreatic imagies the duct was enlarged , never thought of mucus plug. how ever she was dehydrated , specific gravity of urine was alwasy 1030, she had a fever to 99 which her problem is her normal is 96.7 she was dehydrated even on ivs. anyway it was a long 6 months of lying on the floor after pancreatitist went away which was 2 months . then she had crystals in the urine because she was dehydrated, chest pain like pluricy but not coughing. lots of weird things. i did take her to a pulmaologist and did test and xrays and she was fine. however she ended up at 2 canser doctors on for all the lympnodes in the manin places were swollen and at first they were going to do a biospy but did t cell test to check autoimmune problems which she has had 100 test for lupus also her face has had the butterfly reddness when she was so sick. then she was anemic and they thought hemalictic anemia after 3 months that went back to normal. there was so much more but she finally recover sowhat and went on with life. no major things just stomach pain. now at 21 she has had a musus plug in the salvary gland and mucus alone out of rectum . her main proble is exhaustion after activities or end of day. she lives in philly and is married and goes to temple . so she has a dr there that ask about cf because of pancreatitist. then the oral surgan ask about it and a gastro . needless to say better than dukes arrogant drs. we also were at unc. which was no better. so her sweat test were 41/13 then 45/53 . her gentic was through genzyme1 and mine through quest. hers didnt have a secific mutation just 1716g,4404c,1540a,2694t poly status 7t and 7t. the 1716g has been seen with pancreatitist. i am intested in ambry but it isnt covered in north carolin and pa so i will have to pay out of pocket. i have found there are many facters on this 7th gene. my father ,his sister and mother all died of pulmany fibrosis which is related . so many variations are on this gene that can cause numerous problems.
