Re: New Update - Becki

[Guest guest]

Becki,

You sound a little better in your post. Do you feel worse in the

morning and evening? I was just wondering if the middle of the day

is the best time for you. I hope that you continue to feel better

and have a great Christmas.

Gale

> Hey All

> I wanted to thank everyone who wrote to me....

> I still feel crappy but am eating chicken noodle.Brad's coming home

on pass

> today to get his disability forms and some groceries.

> TO answer some questions;;;

> 1. I do not see a CF specialist...just a regular pulmo doc (the CF

centers

> around here basically turfed me...Brads not getting great care

either but thats

> a whole other SPOTTY story ( as is his chest x-ray))

> 2. We have looked into getting cultures sent elsewhere but UNC and

Duke will

> not except them unless your a DOc there and CF cultures need to be

in the lab

> within 4 hours.

> 3. The tylenol has kept the fevers down to a managable level and

the

> phenergan has kept me from vomiting every 5 mins now.

> 4. My doc is generally pretty good.He does an awsome bronch. The

care is 100%

> better than at the Uni's I went to around here.

> 5. For those of you that still go to these UNi's PLEASE don't bring

my name

> up. I know you mean well but the docs and I did not leave on loving

terms and

> one particular doc is a royal jerk and has already started in on

Brad with the

> crappy care.Didn't bother to look at his x-ray until a week after

his appt and

> low and behold he has shadows all over his lungs and now his

function is down

> and the shadows won't clear....so that ticks me off...they told him

he just

> needed to exercise more...like that cures a fever.

>

> I love you guys and basically you're where I go to to blow off

steam ( and I

> really sound like a train whistle......LOL).

>

> I will be calling on Monday to get an apt...the doc won't direct

admit me or

> do home IV's unless he sees me.

>

> Becki

> YOUR FAVORITE LilGooberGirl

> YOUNGLUNG EMAIL SUPPORT LIST

> www.topica.com/lists/younglung

> Pediatric Interstitial Lung Disease Society

> http://groups.yahoo.com/group/InterstitialLung_Kids/

>

>

>