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Re: WE ARE HOME

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Rhonda,

I didn't know that Joradn was in the hospital. Has the Columbus

clinic done a CT scan of Jordan's lungs? Abby had repeat

pnuemonias. That is why they tested her for CF. You and Jordan have

really been through a lot. Please keep us posted. If you come back

to Columbus, let me know. I am going to be out of town a lot between

now and the end of the year, but if I'm here I'd like to meet you.

Gale

> We are FINALLY home from the hospital! I feel so FREEEEEEEEE! LOL

I

> was going insane in that place. Jordan is feeling a little better

> but at least he kept his fever down last night so they let us go

> home. We have an appt Friday to see the dr and he has to have more

> chest x-rays before his appt... probally Wednesday is when they

will

> set it up for. As for now though we are home and loving it. I was

> soooo ready to come home.

>

> We have been in the hospital here since Tuesday!! Jordan had

> Pnemonia(spelling) Is this consistant with possibly having CF?

His

> last test was 39 at Columbus hospital. It has been 80, 58, 57,

and

> then 39... is this normal? Can someone PLEASE explain this to

> me??????

>

> Email me at thearthurs3@z...

>

> Rhonda

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Yea we went in on Tuesday and just got out yesterday(Saturday)

morning. They have done x-rays of his lungs but Im not sure if

that's the same as the CT scan. I dont think it is.

Rhonda

> > We are FINALLY home from the hospital! I feel so FREEEEEEEEE!

LOL

> I

> > was going insane in that place. Jordan is feeling a little

better

> > but at least he kept his fever down last night so they let us go

> > home. We have an appt Friday to see the dr and he has to have

more

> > chest x-rays before his appt... probally Wednesday is when they

> will

> > set it up for. As for now though we are home and loving it. I

was

> > soooo ready to come home.

> >

> > We have been in the hospital here since Tuesday!! Jordan had

> > Pnemonia(spelling) Is this consistant with possibly having CF?

> His

> > last test was 39 at Columbus hospital. It has been 80, 58, 57,

> and

> > then 39... is this normal? Can someone PLEASE explain this to

> > me??????

> >

> > Email me at thearthurs3@z...

> >

> > Rhonda

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The CT scan provides a better picture. Abby's doctors do a CT scan

every 6 months.

Gale

> > > We are FINALLY home from the hospital! I feel so FREEEEEEEEE!

> LOL

> > I

> > > was going insane in that place. Jordan is feeling a little

> better

> > > but at least he kept his fever down last night so they let us

go

> > > home. We have an appt Friday to see the dr and he has to have

> more

> > > chest x-rays before his appt... probally Wednesday is when they

> > will

> > > set it up for. As for now though we are home and loving it. I

> was

> > > soooo ready to come home.

> > >

> > > We have been in the hospital here since Tuesday!! Jordan had

> > > Pnemonia(spelling) Is this consistant with possibly having

CF?

> > His

> > > last test was 39 at Columbus hospital. It has been 80, 58,

57,

> > and

> > > then 39... is this normal? Can someone PLEASE explain this to

> > > me??????

> > >

> > > Email me at thearthurs3@z...

> > >

> > > Rhonda

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Rhonda,

Below is a description of another diagnostic test for CF. It is not

widely available, but from what I understand it is a very accurate

test. It could be something to discuss with your doctors.

Nasal potential difference measurement

Potential difference (PD) (voltage) measured from nasal mucosa and

the reading obtained by a reference electrode inserted into the

forearm correlates with the movement of sodium across cell

membranes, which is a physiologic function rendered abnormal by a

CFTR mutation. A normal mean value standard error (SE) is 0.9-24.7

mV; an abnormal value is 1.8-53 mV. When measurements are repeated

after mucosal perfusion with amiloride to block an epithelial sodium

channel, the drop in PD is greater in patients with CF (73%) than in

control subjects (53%). Normally, subsequent perfusion with chloride-

free solution and isoproterenol produces a sharp increase in the PD

but has little effect when CFTR function is abnormal.

As a result of the lack of commercially available equipment and the

practical difficulties with nasal PD measurement, this test is

performed in only a few research centers to diagnose CF in patients

in whom making a diagnosis is difficult or a sweat test is not

technically possible because of skin problems.

Sara

> We are FINALLY home from the hospital! I feel so FREEEEEEEEE! LOL

I

> was going insane in that place. Jordan is feeling a little better

> but at least he kept his fever down last night so they let us go

> home. We have an appt Friday to see the dr and he has to have

more

> chest x-rays before his appt... probally Wednesday is when they

will

> set it up for. As for now though we are home and loving it. I

was

> soooo ready to come home.

>

> We have been in the hospital here since Tuesday!! Jordan had

> Pnemonia(spelling) Is this consistant with possibly having CF?

His

> last test was 39 at Columbus hospital. It has been 80, 58, 57,

and

> then 39... is this normal? Can someone PLEASE explain this to

> me??????

>

> Email me at thearthurs3@z...

>

> Rhonda

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Rhonda,

This is a quote from one of the most trusted sources of cystic

fibrosis literature, M. Orenstein's " Cystic Fibrosis A Guide

for Patient and Family " copywright 1997, and here is what he says

about the sweat test. It is done on both arms to make ensure that

enough sweat is collected, most CF accredited centers do it on both

arms.

" The sweat test has been the gold standard " for diagnosing CF for

over 40 years and when done by an experienced, reliable laboratory,

the sweat test is still the best test for CF. There are no false

positives (people who test for CF, but don't really have it) and no

false negatives (people whose tests say they have it, but don't

really have it). Once a test result is positive, it is always

positive. Nothing changes as a patient grows older. And sweat test

values do not vary when the patients have colds or other temporary

illnesses. I need to stress the importance of the laboratory doing

the tests. Most CF centers find that CF has been misdiagnosed in

about half of all of the patients they see who have been tested by

inexperienced laboratory personel. Sweat test laboratories associated

with an approved CF center, have passed accreditation by the national

CF Foundation, and can be trusted. Many other laboratories are also

good, but it is harder to know about those not in CF Centers. so goes

on to say about unusual cases: it may be difficult or impossible to

make the diagnosis in a usual way. Examples might be a patient who

doesn't make enough sweat to analyze or someone whose sweat test

results are in the " gray zone " - neither clearly negative nor clearly

positive - AND genetic testing has been inconclusive. The physician

then must consider the WHOLE picture - what are the patient's lungs

like? What germs grow on throat cultures? Does he or she have

abnormal sinuses on x-rays? Are the stools abnormal? Is there finger

clubbing? Occasionally the physician and the family will decide that

that the wisest course of action is 1) to accept that for the time

being that a definite diagnosis can not be made, and 2) to decide to

treat the child as if they HAVE CF. This makes sense because the

treatments are not harmful for someone who doesn't have CF but NOT

getting the treatments could be very harmful for someone who does

have CF.

Rhonda,

>

> I didn't know that Joradn was in the hospital. Has the Columbus

> clinic done a CT scan of Jordan's lungs? Abby had repeat

> pneumonias. That is why they tested her for CF. You and Jordan

have

> really been through a lot. Please keep us posted. If you come back

> to Columbus, let me know. I am going to be out of town a lot

between

> now and the end of the year, but if I'm here I'd like to meet you.

>

> Gale

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