Re: Fw: have not posted in awile

[Guest guest]

OH Tammy I am soo sorry to hear about your daughters lungs. I know how it

feels to have to fight with doctors constantly. I had to the first year and

a half of 's life. She'd probably still be undiagnosed if it weren't

for Yolo. I was dealing with military docs, needless to say I don't speak

to highly of many. Keep us posted, we're here for you, our cyber shoulders

to cry on.

Jen.

>

>Reply-To: cfparents

>To: cfparents >

>Subject: Fw: have not posted in awile

>Date: Wed, 23 Oct 2002 23:22:14 -0600

>

>

> have not posted in awile

>

>

>Hi to all hope your all doing well!!i just thought i would give a little

>update on Brenna not sure anyone even remembers us but iam going to post

>anyway.Well we just found out on tuesday she has third stage CF which realy

>sucks she is colinized with pa they told me that it has taken over her

>lungs but the enzimes seem to be working not to bad.her CT scan was not

>good at all.any way just thought i would fill you all in a little. Its just

>to bad that here in Canada it took so long like for her to be diagnosed

>considering we were at the doc all the time because something was wrong but

>i beleve because of there naglect my little girl had to suffer that much

>and now the damage is done and cant be fixed the only thing that her docs

>now say is that if she was helped sooner for her CF she would not be as bad

>off as she is now .and now she cant fix the damage they say and i beleve

>that it was down right crool.All the times she was so sick month after

>month and they did nothing.so i would like to say to all the ones that are

>haveing problems with a diagnosis dont stop until you are conviced because

>if we dont fight for our children know one will.

>

>hope all is well

>

>lots of hugs

>Tammy mom of Brenna 8 wcf 5 ?cf(in the prosses of being tested lots

>of coughing and 5 lung infections so we are geting her tested as well hope

>not)

>

>

>

[Guest guest]

OH Tammy I am soo sorry to hear about your daughters lungs. I know how it

feels to have to fight with doctors constantly. I had to the first year and

a half of 's life. She'd probably still be undiagnosed if it weren't

for Yolo. I was dealing with military docs, needless to say I don't speak

to highly of many. Keep us posted, we're here for you, our cyber shoulders

to cry on.

Jen.

>

>Reply-To: cfparents

>To: cfparents >

>Subject: Fw: have not posted in awile

>Date: Wed, 23 Oct 2002 23:22:14 -0600

>

>

> have not posted in awile

>

>

>Hi to all hope your all doing well!!i just thought i would give a little

>update on Brenna not sure anyone even remembers us but iam going to post

>anyway.Well we just found out on tuesday she has third stage CF which realy

>sucks she is colinized with pa they told me that it has taken over her

>lungs but the enzimes seem to be working not to bad.her CT scan was not

>good at all.any way just thought i would fill you all in a little. Its just

>to bad that here in Canada it took so long like for her to be diagnosed

>considering we were at the doc all the time because something was wrong but

>i beleve because of there naglect my little girl had to suffer that much

>and now the damage is done and cant be fixed the only thing that her docs

>now say is that if she was helped sooner for her CF she would not be as bad

>off as she is now .and now she cant fix the damage they say and i beleve

>that it was down right crool.All the times she was so sick month after

>month and they did nothing.so i would like to say to all the ones that are

>haveing problems with a diagnosis dont stop until you are conviced because

>if we dont fight for our children know one will.

>

>hope all is well

>

>lots of hugs

>Tammy mom of Brenna 8 wcf 5 ?cf(in the prosses of being tested lots

>of coughing and 5 lung infections so we are geting her tested as well hope

>not)

>

>

>

[Guest guest]

Hi Tammy,

that's so sad to learn :-((

How are the docs treating the PA now? Are they aware of the results

of the Zithromax-study and have begun as soon as possible? What kind

of damage has been done to the lung? Sorry if I pester you with such

questions, but from your message it sounds like the docs are already

giving up on Brenna and that's WRONG. I would never accept the

comment that it's too late to try to eradicate the PA. You are

correct that the delayed dx has made Brenna's condition worse and

made her suffer. But now that you have the dx, your docs have to make

up lost ground.

And what the heck is " third stage CF " ? I've never heard of this.

Peace

Torsten

[Guest guest]

I am so very sorry to hear this,so what are you suppose to do? what do you

mean she is in the 3rd stage, that is not good is it, i'm not trying to be

smart about it ,just curious i have never asked my doctor what stage my

daughter is in, i don't really want to know i guess,well take care and love

and prayers are with you from my family, karen mother of 3wcf