LinkBack URL
About LinkBacks
View Profile
View Forum Posts
Lilypony I live in SC and go to the Cleveland Clinic and see Dr Carol Langford. She is under the Vasculitis Foundation list. I like her and so easy going and on top of things. You like her.
Lilypony I live in SC and go to the Cleveland Clinic and see Dr Carol Langford. She is under the Vasculitis Foundation list. I like her and so easy going and on top of things. You like her.
I am in Cary, which is near Raleigh in central NC. Duke Univ Hospital isn't too far and UNC Hospitals are a drive I really loathe but would do for the right person. I think the one my ENT found to consult was at Duke and he's trying to work to get me in wit somebody quicker than they prefer to accept new patients. I'm toying with going to the emergency room and demanding a consult with the chosen person, at which point I'd be an "established patient" for a follow up. I have a $1000 ER copay so not the route I prefer!
Thank you, if I can't get in with soembody reasonably quickly here I'll have to check her out. I've been tellign hubby I "needed" to go to Charleston anyway!
I don't know how it works in that hospital, but in JHU it wouldn't work to go through the ER. If they admitted you (assuming you were in bad enough shape) you'd just see the rheumy on call. The only exceptions are patients admitted in critical condition-- maybe kidney failure-- and who need an actual Wegs specialist asap to save their life.
I bet your ENT can get you in. When a doctor calls another doctor personally, they bend all the rules.
LilyPony are you feeling bad. I have been at both ends of the hospital spectrum (a patient and taking care of patients). I would definitely get your ENT to call the Weg specialist of your choice like Sangye said. If you start to feel worse and think things are progressing yes get to ER and demand a CT of lungs ( if your having increased shortness of breath) and have them check your urine and blood work. We are here to help. If you want Carol Langford number or have any questions let me know. Let us know how you are doing. All of us here will help you the best we can. You are not alone.
Mentally I feel like a basket case mostly because I'm finding so much info over the weekend. Very overwhelmed but optimistic. Physically I have been stable feeling for the last couple weeks. I got a cold from the kids which has me up all night coughing so I'm exhausted. usually it's just a few coughing episodes then back to sleep, lately I'm lucky to sleep half hour before coughing again. This afternoon I was at a friend's house and she had incense buring in the bathroom. I was "trapped" in there for about 15 minutes with my halfway potty trained 2 year old and now my lungs feel raw so am paranoid about that...
Do you have other symptoms of a cold? If you don't start feeling better in day or so, please do as Elephant suggests and get a CT at the ER.
It's easy to feel overwhelmed. Just take one step at a time. Keep asking questions and we'll do our best to answer them.
By now you've probably done a lot of research. If you have to choose between using your energy on getting to a Wegs doc or doing more research, choose the doc.
LilyPony - I know how easy it is to ignore symptoms when you've got young kids and a full life to attend to. But, as Sangye says, if it seems like the cough isn't going away, or the cold isn't going away, get a CT of your lungs. And has your ENT ruled out stenosis for sure. I was never checked for it for five years (docs just thought I had asthma) but it was there all the time. If I had gotten checked out I could have had it repaired before now and would not have to work so hard for a full breath.
I'm getting a chest xray and bloodwork on thursday. I can't remember what everything is called but the following thursday I am getting the camera to look up my nose down into my throat towards the stomach because of suspected reflux getting up into my larynx. Then I am scheduled to go to the hospital that afternoon to get the camera down to look at my windpipe and lungs. Dreading all that mess but this ENT is really on board with getting me figured out as much as possible while we wait to get in with a rheum to oversee my care.
Reply With Quote