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| Sat, 05-13-2006 - 2:41pm |
Hi everyone...been a while since I've been on here, so I guess I'm kind of new again. I am writing about my sister. She is 35 years old and 6 years ago she suddenly became ill. She had severe pain on her left side and couldn't eat. She was throwing up bile. Well, she was in the hospital for a long time. Finally, she went to a doctor at I.U. Medical Center in Indianapolis (close to where we live). This doctor told her that she was suffering from chronic pancreatitis as a result from a recessive gene for cystic fibrosis. He said her pancreas was not functioning and because she had such a low weight, he put her on a feeding tube (fyi, she has always been very petite and tiny anyway). Along with this tube, he put her on ALOT of narcotic pain medication, including Morphine, Oxycontin, Methadone, monthly shots, etc. Now, over the past six years, she's suffered alot and went downhill quite a bit. Her tube is always infected and she has a very hard time feeding through it. She does try to eat a little by mouth (which I believe is the only thing sustaining her since she can't feed through the tube very often). A few years ago, she decided to get another opinion since she got so much worse after they inserted the tube and doped her up...so she went to the Cleveland Clinic. The doctors there said that her pancreas numbers were within normal range and they said they could help her. She had a few visits with them and she was pretty much weaned off her narcotics. Well, then all of a sudden, the doctor at the Cleveland Clinic, after speaking by phone to her doctor at IU Med Ctr, ended his relationship with her and stopped returning her calls and basically just cut off contact with her. So, now she's back to being on all the meds, and constantly sick and infected. She gets peritonitis quite often from the tube. Also, she has had alot of problems with her meds...for example, just this past thursday she went to get her meds filled and Medicaid denied the script for the Oxycontin because her doctor wrote the brand name down instead of the generic name..yesterday and today she has had major withdrawal from the oxycontin...she is right now in the ER because she is hallucinating and hurting and just freaking out...I mean she's ripping at her hair and crying, thinking everyone is conspiring against her. She is having muscle spasms and such. I'm really scared for her. I honestly believe that whatever was wrong with her 6 years ago that made her sick to start with is not what they said. I think she would have gotten better had they not put the tube in and pumped her full of narcotics. She's so much worse now. Do any of you know of anyone else that went through this? or, any advice on how she can reclaim her life and maybe find a doctor that will try to get her off the feeding tube and meds..at least to see if this helps? I appreciate any and all comments. Thanks!
Wendy

Wendy,
First off, I am sorry to hear about your sister, I think I remember you.