Re: adult cf clinic problems

[Guest guest]

Sounds like a seriously ignorant doctor to me. The genetic blood test-

I'm assuming it showed a CF deletion? If so, clearly your daughter has

CF, and I'd say you need to report that doctor and find a new one.

Sorry to hear about your trouble- although it seems pretty common for CF

patients to run into doctors who have no clue about the disease.

Elias

adult cf clinic problems

Hello, has anyone had this problem? My daughter went to the cf adult

clinic at OHSU in Portland Oregon. The doctor there told her she

probably didn't have CF and to stop all her treatments and medications.

We don't understand this comment. She has had 3 sweat test and one

blood test. Her last Sweat test was 25 where all her previous ones from

infant to 13 were from 76- 86. He said that her bacteria growth in her

lungs is typical for Cf and the bleeding from her lungs with her

diabetic and digestive but she probably doesn't have it because of her

last sweat test. She has never seen this doctor. Has anyone had this

problem before. She is devasted and her RT said it would kill her if

she did not have the treatment everyday. Thank you

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[Guest guest]

Change doctors right away. You owe yourself & her with another opinion.

That is ludicrous. He hasn't seen her & how can he tell you that. PLEASE

go see another CF doctor, now. I would listen to the RT as well

When the second opinion is saying this doc is wrong -Then sue the idiot

doc's butt off..................

Now I know those tests can be kookoo . But that is a long time to go

before someone says that & considering health/sickness/cost. Etc. that

isn't some casual comment he is making

..

LOVE & HUGS,

GRDMBEV

adult cf clinic problems

Hello, has anyone had this problem? My daughter went to the cf adult

clinic at OHSU in Portland Oregon. The doctor there told her she

probably didn't have CF and to stop all her treatments and medications.

We don't understand this comment. She has had 3 sweat test and one

blood test. Her last Sweat test was 25 where all her previous ones from

infant to 13 were from 76- 86. He said that her bacteria growth in her

lungs is typical for Cf and the bleeding from her lungs with her

diabetic and digestive but she probably doesn't have it because of her

last sweat test. She has never seen this doctor. Has anyone had this

problem before. She is devasted and her RT said it would kill her if

she did not have the treatment everyday. Thank you

_______________________________________________

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[Guest guest]

Then why don't you have her gene tested?

Dawn mom of 4, 8 and under, the youngest wcf

[Guest guest]

Elias; I am personally horrified by that experience; my great grandfather

was one of the founders of that medical school, now called OHSU, and I

went to that cf clinic/center for about seven years! There is a complaint

department, and the doctor I would recommend at the CF Center is named

Wall--now, if I find out this guy came up with this theory, I am going

to turn the color of my last name! However, two copies of a cf mutation have

to be present to dna diagnose cf; usually it is done on the presentation!!!!!!!

This is awful! Poor ! I am in California now and have been since 1960,

so have little to suggest--they guy must be a real dolt! And if the Dolt is

Wall,

I am stumped! Love to you and to , n Rojas, wcf

adult cf clinic problems

Hello, has anyone had this problem? My daughter went to the cf adult

clinic at OHSU in Portland Oregon. The doctor there told her she

probably didn't have CF and to stop all her treatments and medications.

We don't understand this comment. She has had 3 sweat test and one

blood test. Her last Sweat test was 25 where all her previous ones from

infant to 13 were from 76- 86. He said that her bacteria growth in her

lungs is typical for Cf and the bleeding from her lungs with her

diabetic and digestive but she probably doesn't have it because of her

last sweat test. She has never seen this doctor. Has anyone had this

problem before. She is devasted and her RT said it would kill her if

she did not have the treatment everyday. Thank you

_______________________________________________

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[Guest guest]

,

I would seriously doubt that the doc had his head on right. I would think that

he would order a new sweat test. They do get them wrong sometimes! Maybe the

25 test was WRONG! Also I would request mutation testing. that would seem

obvious, since she is symptomatic. What I can't figure out is why the doc

didn't order these tests.

mom of , 5 with CF and a boy on the way

adult cf clinic problems

Hello, has anyone had this problem? My daughter went to the cf adult clinic

at OHSU in Portland Oregon. The doctor there told her she probably didn't have

CF and to stop all her treatments and medications. We don't understand this

comment. She has had 3 sweat test and one blood test. Her last Sweat test was

25 where all her previous ones from infant to 13 were from 76- 86. He said that

her bacteria growth in her lungs is typical for Cf and the bleeding from her

lungs with her diabetic and digestive but she probably doesn't have it because

of her last sweat test. She has never seen this doctor. Has anyone had this

problem before. She is devasted and her RT said it would kill her if she did

not have the treatment everyday. Thank you

_______________________________________________

Join Excite! - http://www.excite.com<http://www.excite.com/>

The most personalized portal on the Web!

[Guest guest]

n, It was not Dr. Wall. He is a sweetheart. Dr. Wall was one of her Dr.

as a child along with Dr. Terry. They are great. This doctor is new and

apparently only CF Adult. She had the positive Results on the blood test to

prove. But this Dr apparently thinks that it is only confirmed by Sweat Test.

If only he spent days and nights with this child trying to keep her alive and

the hospitals stays and all the meds. Yes I think I will report him to

complaints department. Thank you

From: n Rojas To:

cfparents@...: Wed, 11 Feb 2004 12:59:55 -0800Subject: Re:

adult cf clinic problemsElias; I am personally horrified by that

experience; my great grandfather was one of the founders of that medical school,

now called OHSU, and I went to that cf clinic/center for about seven years!

There is a complaintdepartment, and the doctor I would recommend at the CF

Center is named Wall--now, if I find out this guy came up with this

theory, I am goingto turn the color of my last name! However, two copies of a

cf mutation haveto be present to dna diagnose cf; usually it is done on the

presentation!!!!!!!This is awful! Poor ! I am in California now and have

been since 1960,so have little to suggest--they guy must be a real dolt! And if

the Dolt is Wall,I am stumped! Love to you and to , n Rojas, wcf

adult cf clinic problems Hello, has anyone had this problem? My daughter went

to the cf adult clinic at OHSU in Portland Oregon. The doctor there told her

she probably didn't have CF and to stop all her treatments and medications. We

don't understand this comment. She has had 3 sweat test and one blood test.

Her last Sweat test was 25 where all her previous ones from infant to 13 were

from 76- 86. He said that her bacteria growth in her lungs is typical for Cf

and the bleeding from her lungs with her diabetic and digestive but she

probably doesn't have it because of her last sweat test. She has never seen

this doctor. Has anyone had this problem before. She is devasted and her RT

said it would kill her if she did not have the treatment everyday. Thank you

_______________________________________________ Join Excite! -

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------------------------------------------- The opinions and information

exchanged on this list should IN NO WAY be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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[Guest guest]

Well, now that is a relief, Love and luck, n Rojas

adult cf clinic problems Hello, has anyone had this problem? My daughter went

to the cf adult clinic at OHSU in Portland Oregon. The doctor there told her

she probably didn't have CF and to stop all her treatments and medications. We

don't understand this comment. She has had 3 sweat test and one blood test.

Her last Sweat test was 25 where all her previous ones from infant to 13 were

from 76- 86. He said that her bacteria growth in her lungs is typical for Cf

and the bleeding from her lungs with her diabetic and digestive but she

probably doesn't have it because of her last sweat test. She has never seen

this doctor. Has anyone had this problem before. She is devasted and her RT

said it would kill her if she did not have the treatment everyday. Thank you

_______________________________________________ Join Excite! -

http://www.excite.com The most personalized portal on the Web! [Non-text

portions of this message have been removed]

------------------------------------------- The opinions and information

exchanged on this list should IN NO WAY be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------