Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Hi everyone, I talked to the director of research at the cystic fibrosis foundation today in hopes that i would be eligible for any clinical trials they might be doing for my cp due to a mutated cf gene. I had hoped for the best and prepared for the worst before I even made the phone call. It was just what I had expected.....I am in a minority group. Which basically means I am not afflicted enough for the research teams to start any real testing for treatment of my particular form of cp. I am not afflicted enough...doesn't matter that every 2 weeks now, I am in the hospital with a full blown attack, getting 100 mg of demerol every 3 hours for 1 week or more and still fighting with the nurses and doctors about my pain meds, as well as listening to my doctor go on and on about how he cannot justify by the tests that i am in that much pain. what a joke. The real issue however, is that he told me there are not enough docs out there who know about this test to be offering it to people. My family does not have a history of anyone having cf but both my parents were carriers. so, that means I probably would never have had the test if my girlfriend didn't run across the info on the internet. That alone ended the confrontations with the doctors about my cp being caused by drinking which was the only explanation they could give after i tried everything they told me to do. that was even a bigger joke. so here i sit in limbo. do i see a gastroenterologist or a doc specializing in cystic fibrosis? Anyway, wishing everyone a pain free night, even though i know mine will not be.....dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 > >Reply-To: pancreatitis >To: pancreatitis >Subject: not afflicted enough >Date: Mon, 16 Sep 2002 04:36:42 -0000 >>Hi everyone, > I talked to the director of research at the cystic fibrosis >foundation today in hopes that i would be eligible for any clinical >trials they might be doing for my cp due to a mutated cf gene. I >had hoped for the best and prepared for the worst before I even made >the phone call. It was just what I had expected.....I am in a >minority group. Which basically means I am not afflicted enough for >the research teams to start any real testing for treatment of my >particular form of cp. I am not afflicted enough...doesn't matter >that every 2 weeks now, I am in the hospital with a full blown >attack, getting 100 mg of demerol every 3 hours for 1 week or more >and still fighting with the nurses and doctors about my pain meds, >as well as listening to my doctor go on and on about how he cannot >justify by the tests that i am in that much pain. what a joke. The >real issue however, is that he told me there are not enough docs out >there who know about this test to be offering it to people. My >family does not have a history of anyone having cf but both my >parents were carriers. so, that means I probably would never have >had the test if my girlfriend didn't run across the info on the >internet. That alone ended the confrontations with the doctors >about my cp being caused by drinking which was the only explanation >they could give after i tried everything they told me to do. that >was even a bigger joke. so here i sit in limbo. do i see a >gastroenterologist or a doc specializing in cystic fibrosis? Anyway, >wishing everyone a pain free night, even though i know mine will not >be.....dennis > Dennis: I'm sorry but if you told I don't remember what where live. My suggestion would be to see a gastroenterologist, preferably one knowledgeable in treating pancreatitis. If you haven't checked the database, be sure to look at it and see if there is a doctor listed near you. Also if you do not see one listed post what state you are in and hopefully someone can offer some suggestions. Tuten-SC _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Dennis, So sorry to hear you didn't get good news! You are in my prayers for a pain free or at least a less pain night. not afflicted enough Hi everyone, I talked to the director of research at the cystic fibrosis foundation today in hopes that i would be eligible for any clinical trials they might be doing for my cp due to a mutated cf gene. I had hoped for the best and prepared for the worst before I even made the phone call. It was just what I had expected.....I am in a minority group. Which basically means I am not afflicted enough for the research teams to start any real testing for treatment of my particular form of cp. I am not afflicted enough...doesn't matter that every 2 weeks now, I am in the hospital with a full blown attack, getting 100 mg of demerol every 3 hours for 1 week or more and still fighting with the nurses and doctors about my pain meds, as well as listening to my doctor go on and on about how he cannot justify by the tests that i am in that much pain. what a joke. The real issue however, is that he told me there are not enough docs out there who know about this test to be offering it to people. My family does not have a history of anyone having cf but both my parents were carriers. so, that means I probably would never have had the test if my girlfriend didn't run across the info on the internet. That alone ended the confrontations with the doctors about my cp being caused by drinking which was the only explanation they could give after i tried everything they told me to do. that was even a bigger joke. so here i sit in limbo. do i see a gastroenterologist or a doc specializing in cystic fibrosis? Anyway, wishing everyone a pain free night, even though i know mine will not be.....dennis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Dennis, So sorry to hear you didn't get good news! You are in my prayers for a pain free or at least a less pain night. not afflicted enough Hi everyone, I talked to the director of research at the cystic fibrosis foundation today in hopes that i would be eligible for any clinical trials they might be doing for my cp due to a mutated cf gene. I had hoped for the best and prepared for the worst before I even made the phone call. It was just what I had expected.....I am in a minority group. Which basically means I am not afflicted enough for the research teams to start any real testing for treatment of my particular form of cp. I am not afflicted enough...doesn't matter that every 2 weeks now, I am in the hospital with a full blown attack, getting 100 mg of demerol every 3 hours for 1 week or more and still fighting with the nurses and doctors about my pain meds, as well as listening to my doctor go on and on about how he cannot justify by the tests that i am in that much pain. what a joke. The real issue however, is that he told me there are not enough docs out there who know about this test to be offering it to people. My family does not have a history of anyone having cf but both my parents were carriers. so, that means I probably would never have had the test if my girlfriend didn't run across the info on the internet. That alone ended the confrontations with the doctors about my cp being caused by drinking which was the only explanation they could give after i tried everything they told me to do. that was even a bigger joke. so here i sit in limbo. do i see a gastroenterologist or a doc specializing in cystic fibrosis? Anyway, wishing everyone a pain free night, even though i know mine will not be.....dennis Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.