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Re: TX Eval Update

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Becky,

I am sorry that you are feeling so bad. I envy your strength and

character. I wish that we lived closer, so I could offer to help

with some of the paperwork. Please keep us posted and let us know if

we can help in anyway.

Gale

> Hey Everyone

> Well I am still not feeling well at all. I can't shake these

horrible

> headaches and this darn

cough...GRRRRRRRRRRRRRrrrrrrrrrrrrrrrrrrrrrrrrr

> Anyways, I was calling all the Lung TX centers I could and finding

out what

> my doc needs for any eval to be sent up. He has been horrible about

getting on

> the ball with this stuff.

> So far Ive had two centers call me back..Mayo CLinic in

ville,Florida

> and Tampa Generals Lung TX Coordinator. She is very very helpful

even when my

> doc was being a royal butthead. They are being horrible about

faxing stuff.

> Long story but

> Im gonna have to basically do this mayself b/c they don't have TIME

to fax

> all the info and were sooooo irritated. I mean they are all for me

getting a TX

> but want me to do all the work. My docs wife is the nurse at the

office and

> she was so rude I want to just go off.

> Anyways, the coordinator just said don't worry about it let them be

irritated

> and we're gonna call them for more stuff so they better just " GET

Over It "

> LOL

> I just hope that I can get an eval with several of these

centers...Im

> calling several.

> Anyways....that wa sit....I drove over 200 miles today signing

freaking

> releases so I could get the info to them. Ya know...HIPPA is a

royal pain in the

> tushy.

> Anyways...does anyone have any experience with the center in

JAcksonville

> fLorida or Tampa?

> Lets keep our fingers crossed that this will get rolling soon.....

>

> 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/

>

>

>

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Becki,

I hope that you can finally get evaluated and hopefully get a transplant. I

just cannot believe that your doctor and his staff are acting the way that they

are!!!! But the transplant coordinator is right, they will just have to get

over it!! I hope that all goes well, and let us know how things progress!!!!

Katy

Mom to Austin 4 no CF & Piper 14 months w/CF

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Becki--I wish you nothing but the best. Please keep us posted some how!!! I

will pray for you.............

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

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