Re: Questions and Comments about CF?PATTIE and listers

[Guest guest]

We found that the first year was the worst--and then as the cf kid did better,

we

had the honor and the pleasure of facing ADOLESCENCE--kid is now 38, short

and smarter than both parents combined; now I do my grandkids' diapers--do not

even have to be a " poopologist " save for one of them, and that kid is doing

well--

but all have had a battle to get there, as did I. Best of good fortune to you

and to

yours this year, n

Re: Questions and Comments about CF

Hi all,

I don't post much, just a reader, but I wanted to add my two cents. I too

begged my daughters prior pediatrician to do tests knowing something was

wrong.

They told me she was growing poorly because of her vegetarian diet and the

constant " cold " was because she was in daycare. I owe much gratitude to the

nurse who decided to go above the doctor's orders and test her pulse ox. 80

and

dropping. She was hospitalized and dx'ed with pneumonia. That was enough

for them and testing stopped. Her pulse ox went up after two days of oxygen

treatment and a round of augmentin but the cough never cleared up. They

insisted

she was fine and wouldn't even do another chest x-ray. Out of desperation I

changed doctors (this was number four). Finally a doctor with heart, he

insisted on a Chest X-ray and from there a CAT Scan. Turns out her lower left

lobe

was collapsed, as if that wasn't heart breaking enough we were referred to a

Pulmonologist who thought it would be a good idea to test for CF. It was if

we knew and didn't need the test to prove it. Our family thought it was

comforting to tell us there was no way. " It's not on either side of the

family! "

" She is fine, look at her she looks like a normal kid. " Well after the dx we

became honorary medical experts and everyone comes to us for advice, for

everthing and anything! But the worst job I now have is, as someone on the

list

once referred to all of us, Poopologist. I get to change every stinky diaper

for

friends and family because, " After Channa's diapers these must smell like

roses! " Sure its heartbreaking, the idea that we may outlive our kids. I

will

continue to spend nights crying for the crap my daughter has to put with and

wishing it would just go away. The first year after dx was the worst. We try

to learn as much as we can and we panic over the small things. But it does

get

easier to handle. The heartbreak doesn't go away it just gets easier to cope

with.

Just my two cents, thanks for listening.

Pattie mom to Channa 5wcf.

[Guest guest]

In a message dated 1/3/2004 1:12:55 AM Central Standard Time,

milanfoundation@... writes:

Well, I have read each and everyone of the posts on this subject and the one

thing that is closest to my heart is that I have had others tell me that

doctors have said that African Americans don't have to worry about getting

tested

because " blacks don't get it " . Well hello, why not? Just because the

prevelant race is caucasian does not mean that other races cannot pass on the

genes.

My goal is to not only raise awareness about this disease but to raise

awareness about the fact that there are no color lines when it comes to CF.

Tucker

Mom of Milan 4 1/2 wcf

YOU GO GIRL!!!!!!!!!!! DEB A

[Guest guest]

I have to agree with one of the main reasons they didn't want to test

Christian is because my husband is Hispanic. Hispanics don't get cf ... yeah

right.

Tina Mom to Christian 12 yowcf

[Guest guest]

Right!

n Rojas