Hospital again

[elephant]

Thanks for the update. Tell Dee"HI!" Miss her.

[Sangye]

Thank you for letting us know, Baron. Why didn't they start blood thinners sooner? I thought they already diagnosed a blood clot in her legs.

[BARON]

The leg scan had come back clear she had' had a d demur test which had proved positive the big problem is going to hospital were they do not know about Wagner's problems so you have to explain to them and they tend to not realise you have an understanding of the disease and all the problems it can course. This may sound offensive to some people but if you went in and said Ive got cancer there under standing is greater because they do not see this disease most of them do not have any knowledge of it even doctors say what is it and go off to look on Internet. In my own view what needs to happen is a bracelet the same as rare blood groups so that when you go to hospital you do not have to explain why you need not to be in a/e and need to be kept form general infections sorry if i rattle on a bit but we have to make the systems work better for every one

[elephant]

I hear you. Even here in South Carolina I need to educate doctors and nurses when I go into the hospital. I really should tape myself ( educational video) and hand it to them. To grab their attention..I'll even dress like an elephant.

[Col 23]

Maybe we need to talk to the Vasculitis Foundation about more education for the community and medcial profession globally. I know they are probably doing all they can but I think we need more. We are such a minority group and unusual in our presentations but it can be very frustrating. I often wonder because this disease is not curable and can only be managed if we are getting a fair deal because of that. (Does that make sense its 2.30am here and cant sleep). cheers Col 23

[Sangye]

Even though Wegs is our reality, most docs and hospitals are never going to see a patient with Wegs.

There's a Buddhist saying that goes "Don't try to cover the earth with leather." It means just cover your own feet (with shoes)--just take care of yourself. I think it applies to Wegs. We can get frustrated and try to change the vast medical profession to focus on this rare disease-- that presents completely differently in each person, no less-- or we can all educate ourselves thoroughly about the disease, drugs and diagnostic procedures and be prepared to explain it to ER docs and others when necessary. It's possible. I know many parents of kids with cancer who can rattle off all the tests and details about their child's illness and treatment with the accuracy and terms used by their oncologists. One is becoming an RN and is sailing through the courses!

[BARON]

I have to disagree with that if Wegener himself had thought that. People with wegs would still be dieing to an unknown diseases you could say way take first add course because you my never see some one dieing or in an acedent but we do all knolege gives the chance to save one person live must be for the good.

[elephant]

I usually explain to people that Wegeners is like Lupus but worse! Then they know what I am talking about, then I explain further...

[pberggren1]

Elephant, Durham is in South Carolina, right? It is part of an area called the Research Triangle, right?

Isn't there a Wegs specialist in Durham?

[elephant]

Durham is in North Carolina. I am not sure if there is a Wegs specialist in Durham...I knew that Cleveland Clinic had a good Rheumy department and heard nice things about Dr Carol Langford. I am looking forward to my next visit. Going in June. Yea!