Determined to find a Wegs expert

[LisaT]

That doesn't sound helpful at all. It's strange because he is supposed to be 'the' guy... but he does get mixed reviews. I know my rheumatologist dr. Kur has at least some other wegeners patients but I'm not sure how many... I think I'll ask him next time I see him. I'm feeling crappy again and if he doesn't have any more suggestions or answers I think I'll ask my GP to send me for another opinion.

[annekat]

I get the feeling some of these rheumies who are known for treating WG like to work with the sicker patients. A Weggie I know goes to Dr. Gardner at UW in Seattle, who is getting pretty well known and the implication I got was that it might be harder to get an appt. with him if you are doing pretty well, e.g. in medicated remission. But I also heard there are other good rheumies at the clinic there who can treat WG competently but just aren't as well known. So maybe something like that is going on with this Dr. Shojania. Maybe you are sick enough for him, Lisa. But it doesn't seem right, still, that cute hair was brushed off like that.

[Pete]

Returning to Calgary sounds like a good idea. I have no idea of the distance from where you are to there. But I saw something about a vasculitis specialist center in Calgary, not sure if it was on here or on Facebook and don't know why I didn't share or save it. Was tired, I guess... I can understand, though, why if you are in medicated remission, there'd be no urgent need to travel to a specialist center, and it seems like there should be a rheumy competent to handle this closer to home. You should be getting more professional treatment than what you described.

Phil Berggren is being treated at Foothills Medical Center in Calgary (fwiw).

[annekat]

Phil Berggren is being treated at Foothills Medical Center in Calgary (fwiw).

Right, which is why I especially took note of the center in Calgary, or did I dream it? Guess I'd better look for it....

[annekat]

Here's a link which looks very helpful for Canadians: CanVasc homepage. Don't have time to look for a Calgary center I thought I saw, but maybe it can be found here. There's a conference in Calgary in Oct. listed here too.

[cutehair2013]

I do think that Dr. Shojania has a lot of knowledge to share and I too was told he was "the" one to go to here in BC, he does get very mixed reviews and it could just honestly be the case at that this point I am not "sick" enough for regular follow ups, as I would be taking time from people that need his attention in order to feel better. When I moved here to took 4 months to get into see him, but mind you I was already in medication remission. Dr. Shojania also said that all of his WG patients remain on medications for life to keep it at bay.

Lisa you should at least meet him and see if he is able to help you feel better, if not he maybe able to add some additinal information to assist you in fiding a specialsit to work with.

I was reading the thread on Phil and noticed he is being treated at Foothills....great hospital he is in very good hands. Such great hands I am thinking of going back just to see the doctors! 12 hour drive nice drive in summer but yikes in winter! This damn WG is scary Phil and I are about the same age, its scares me how quickly you can go from living life, to not feeling well to holding on to life, with little or no notice. My thoughts are certainly with him and his family right now.

[annekat]

Cutehair, I think it's our consensus on here that people in medicated remission still need follow up, regular bloodwork, etc. I can understand why Dr. Shojania would want to give preference to more seriously ill patients. But maybe he could refer you to a rheumy in Vancouver, or you could find one yourself, who is not quite as busy and is capable of monitoring regular bloodwork and adjusting meds if necessary. Maybe you could try Lisa's doc mentioned above. I do understand the dilemma! It doesn't seem right that a person in medicated remission, or non-medicated remission, for that matter, should be considered "over it" enough not to need regular monitoring by someone with WG experience. And Lisa, maybe Dr. Shojania could help you with your issues, which seem quite troubling at this point!