TX Visit will be HOPEFULLY in 2 Weeks ! ! !

September 12, 2003

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

Pediatric Interstitial Lung Disease Society

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