Re: TX Visit will be HOPEFULLY in 2 Weeks ! ! !

[Guest guest]

PLEASE keep us posted. I will be wondering about you a lot. This is

both exciting and scarey at the same time.

Love,

Gale

> LOL

> Well I just got a call from Mayo CLinic in ville and they

want to set

> up an appt...should be in 2- weeks....WOW...makes me nervous.

> I mean is this really gonna happen? The wait is not long there at

all

> especially since Im A+.

> I also found out I may not have to go off my Imuran or my other

drugs before

> TX...that is such a huge relief...you have no idea what a relief

that is ! ! !

> ! They said my arthritis should get much better when I do get new

lungs.

> Heidi the coordinator was very very nice too. WOW...this is

happening

> now.....keep your fingers crossed that this will work and I can get

listed somewhere.

> Now I gotta try to find some missing records..A Sniff test b/a my

right side

> of my diaphram is REALLY REALLY elevated where the lobe

disapeared...and no I

> did not have a lobectomy. They want to make sure that it

works...and the test

> was normal...so it works my lung just disapeared...LOL

> I also gotta get my empting study and CT Reports and my CF center

sputum

> since I cannot rely on the ones I have don from the doc here

locally...They don't

> see Cf patients at my hospital so their cultures are really

lax....they just

> grow them out and then discard them 48 hrs later.... My last Bronch

looked like

> something was growing.....but they tossed it in 48 hrs....Gram

Negative Rods

> and Postive Cocci

> Staph and my Serracia or Steno or Pseudo most likely.

> Anyways....thats it for right now...is anyone listd in ville?

> So now at least 2 centers are eager to at least meet with me. Which

is a nice

> change.....

> She asked for Recent PFT's.I gues the Office ones will do....they

were 27%.

> But my pitiful diffusion capacity and the Shunt Study is elsewhere.

>

> 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/

>

>

>

[Guest guest]

Bekic,

Yippeee!

Good luck!

I sure hope they can get you listed and get that TX done soon!

Love Ya!

Aunt B

[Guest guest]

Becki, joining in here with Aunt B. HOPING for that transplant!!!!!!!

Love to you, and all at cf parents and YOUNGLUNG who are pulling

for you, also Second Wing.

n Rojas