Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 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/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 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 " Quote Link to comment Share on other sites More sharing options...
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