not afflicted enough

[Guest guest]

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

[Guest guest]

>

>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