Just diagnosed with GPA in last week

[duffybear]

I had the very good fortune to be sent to the ER at VGH - it was the respirologists there that confirmed the diagnosis last week, and put me on prednisone. I have an appointment with them again on January 5, but it sounds like I'll have to find a rheumatologist.

It's interesting, and a tad overwhelming, to read the many different experiences of folks on here. So many, in so many different situations, some so very difficult. My heart breaks for some posters. Still, there are lots of good things that happen too.

[LisaT]

Who is your ENT? I was tentatively diagnosed by an ENT in Vancouver who is an expert in stenosis and not in bedside manner. I'm also curious who the respirologists are. I saw dr. Carlsten who I really liked, but he was not convinced I have WG (I'm ANCA-negative). My rheumy Dr. Kur is associated with VGh and I first saw him through the rapid access clinic when I was in the midst of being diagnosed with RA 4.5 years ago. He's a very nice guy and I'm still trying to figure out whether he's going to help me feel closer to normal. He's definitely helped me get breathing better and joint inflammation under control, but I sometimes feel like he doesn't really get the huge impact my remaining symptoms have on my quality of life. Still he is with UBC, VGH, head of the arthritis society and has access to all the right facilities and specialists should anything urgent arise. So I keep going back and reporting how crappy I feel and asking for rituximab. Sorry, I don't mean to steal your thread but since you're in Vancouver thought I'd share doctor details! I'll connect more when I have some more time and energy. ��

[duffybear]

Hi Lisa - Happy to share any info with you! My ENT - who I had never seen before, he's apparently new to Vancouver (possibly from China?) - is a very oddball guy, who - to his credit, in my case - went into high panic mode when he saw crusting in my trachea. He wrote this very over-the-top/"my patient could die" letter to the respirologists at VGH, which is why I got a bronchoscopy so quickly. We were all kind of rolling our eyes (even I, sick as I was, didn't envisage such a diagnosis). However, his instinct that something was seriously wrong was correct and I owe him a HUGE thanks. To be honest, I suspect he's never seen GPA before. I'm not sure I'll eventually end up with him, but I feel blessed I saw him. The respirologist I saw at VGH was Dr. Jeremy Road - I think he may be the head of the Respiratory Ambulatory Unit at VGH. I think he ,too, was a little surprised by the diagnosis - he kind of said to me that day, a little astonished, "well, you actually have something", viz GPA. I need to ask him, when I see him on Jan. 5, about other meds beyond prednisone and also how/where to find a rheumatologist.

I'm a bit clueless at this point about moving forward, so I'm not much use to you otherwise at this point. However, I did work for almost 20 years as a legal advocate in Vancouver's Downtown Eastside (helping people with disability applications, welfare, tenancy issues, etc. - I happened to retire the same day I got the GPA diagnosis, what fun), so perhaps I can use my advocacy skills for myself and other local GPA folks this time! (Having said that, I'm also pretty burnt-out and worn out, so maybe I shouldn't over-promise anything...)

Btw, I looked at your profile - you and I may know people in common - I've worked a fair amount with public interest advocacy lawyers here in Vancouver. (I am not a lawyer, though, just do administrative law as noted above.)

[LisaT]

Focus on getting yourself the right doctors and meds, and getting your energy back. It sounds like you have great skills and once you feel better you could definitely help other Weggies. That's my someday hope, as well. Unfortunately I've been in survival / just get through the day mode for a long time. Hopefully you're on your way to feeling great and will be able to do what you want! I haven't practised law in many years but you may have come across the lawyer who's representing me against my health insurer. She's with Watson Goepel. I look forward to chatting more...