Reality Check

[Doug]

Gives pause, doesn't it? What a tragedy.

[andrew]

Damn. That's so sad. Wouldn't the doc think that something must have been wrong? The guy must have been obviously sick. I guess we'll never know. Despite the tragic circumstances Sangye, thanks for posting. It is indeed a highlight to all of us, newly diagnosed or 'experienced', to get and keep specialised care.

[Sangye]

I was that sick in June when I was hospitalized for the 2nd round of pneumonia in 2 months (or a continuing infection). The non-Wegs rheumys and pulmys said it wasn't a Wegs flare, even though I was coughing up blood and weak as can be.

They said I "looked too good to be flaring," that my blood work was fine (ie no inflammation), and that even though the bronchoscopy showed alveolar hemorrhage, there wasn't enough blood to call it Wegs. They decided I didn't even have pneumonia, and sent me home with a dx of "minor viral infection." One of them actually belittled me (seriously) for taking up a bed in the Pulmonary ICU for something so minor.

When my Wegs doc found out the next morning, he was livid. It was obviously a flare. So it could have happened to me, too.

[coffeelover]

I hate to hear that story. I too have relatively good numbers in most of my blood work, but my rhuemy is concerned about one particular number and that is why she is sending me to a WEGS specialist. I am thankful for that, especially after hearing this story.
coffeelover

[skipper]

Is there anyone in the Toronto Ontario Canada area that knows of a Wegs specialist? I am in a small city and there are no rheumatologists and I get most of my information from you. That is very helpful and it has given me great direction but I would like to sit down with a specialist and ask a lot more. Any advice would be helpful.

[pberggren1]

Dr. Simon Carette at Mount Sinai in Toronto is the best in eastern Canada.

[skipper]

Thank you Phil, I can always count on this forum and you. Skipper

[elephant]

That just makes me sick to my stomach to hear that. Can't believe the pulmonary doctors not thinking it's WG, considering your history?!?!
That is so awful about that man losing his life because of WG. That is a darn shame.

[Sangye]

They were great doctors (except for the guy who belittled me-- he was a lousy doc all round), they just didn't know Wegs all its disguises. They don't understand that Weggies can look fine and be gravely ill. (Not that I looked at all fine. But because I maintain my sense of humor, it gives the impression that I'm in better shape than I am. Gravely ill people don't usually laugh)

Even my Wegs doc said that unless a doc sees Wegs every day, they would have missed my flare.

[elephant]

Sangye, you have a great sense of humor. You keep me laughing!