Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Hi there sweetie, My granddaughter attends DUKE and has for 18+ years. She has always be well treated .This last time when she had such ignorant care at her hometown hospital .(3hours).they simply didn't know ??? about CF, meds, etc, ANYWAY, after a 2 - 1/2 hour drive in ambulance --Duke had her up in 3 days & home in 4. Mind you that was her 3rd week in hometown hospital & they had even done 2 surgeries....not needed......... Sooooooooo, Duke staff in their CF Team has also been changed around---maybe a call to just ask who are the folks on the team now. You don't even have to say who you are............That isn't asking any " HIPPA " forbidden questions:):). A very good friend of mine & support group member had her TX there & nothing but great raves. She is on this list every so often as well AMY----Where are you.?? She even had worked there & knew many others , she could refer you too. REMEMBER .Times change...staff's change. Improvements are being made most all the time. It sure wouldn't hurt to go yourself & " interview " . see -talk to-, whatever will make you feel better again. I want you to be around kiddo....so get on it & " GO GIRL " yourself!!! LOVE & HUGS, from someone who loves ya! GrandmomBEV Transplant Update Well... I am totally confused as to what to do. I really wanted to get listed at UAB in Alabama but my poor friend is really being jerked around and the things that have happened to her...a near doosy with insulin and whatnot....has got me seriously reconsidering. I am thinking of Duke...even though I despise the CF team but they say that the CF doc doesn't deal with the TX folks so maybe I'll be ok. I mean when you are sick, its hard to try to think straight and figure out what to do. I am really worried about my buddy down at UAB and maybe she'll be coming up here if they keep jerking her around. She's such a spunky chick and I believe thats why she's still around ! ! ! YOU GO GIRL...=) I defin. don't want to move 10 hours away from family and whatnot to get the boot if the going gets rough. Since Ive come home this week from this last infection I just have this urgency that something isn't right. I am just so whipped out and in a lot of pain all the time. Now my port hurts something terrible too. The needles they use in the hospital now for ports are HUGE and they leave a huge hole in my chest around the needle b/c they are so big.....its supposed to be a safety needle so people don't get stuck however if you get stuck doing a port needle change you shouldn't be doing them b/c its so simple. But the flaps on the side are big and causes the needle to stick out away from my skin...causing it to make a big swollen hole. I am praying to GOD that it isn't infected again. Its hurting and throbbing so bad I can't sleep. Plus I have a sore lung and sinus headache...UGHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhhhhh I am worried that I'll start spitting up more blood with as hard as I have been coughing. I am throwing up several times a day too. Anyways thats it for right now. I am not sure what Im gonna do about where to go for TX..... I have cultured MRSA in the past and aspergillus. IT looks like Duke will probably be the best bet as its only 30 miles from me. But I am not totally sure yet. 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 May 27, 2003 Report Share Posted May 27, 2003 In a message dated 5/27/2003 4:50:53 AM Central Daylight Time, MissGooberGirl@... writes: > Becki > You need to talk to your doctor!! I know you are use to the pain but you really know you body better then anyone and it is telling you something is not right!! PLEASE PLEASE CONTACT YOU DOCTOR!!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 I really do think this is great advise. If you have that feeling, YOU need to call him & say so. This has gone on to long at this calaiber.Please call . Deb is right LOVE & HUGS, grandmomBEv Re: Transplant Update In a message dated 5/27/2003 4:50:53 AM Central Daylight Time, MissGooberGirl@... writes: > Becki > You need to talk to your doctor!! I know you are use to the pain but you really know you body better then anyone and it is telling you something is not right!! PLEASE PLEASE CONTACT YOU DOCTOR!!! Deb A Quote Link to comment Share on other sites More sharing options...
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