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"I Don't Know" - Notes from the VF Symposium
I have once again got access to a laptop, however, I'm not going to have time to transcribe all of my notes because I am on vacation with my family. I will get out bits and pieces in the next week and do something more thorough when I get home. If you want to ask me questions about the conference, I will definitely try to answer them based on what I remember. Let's try to keep all the questions in this thread so that they are easy to find.
A couple of general impressions -- if you can ever have the opportunity to go to one of these conferences RUN DON'T WALK! The docs are accessible, the patients are lovely, the information wonderfully specific to WG. It far, far exceeded my expectations.
Along wtih that -- I'm going to plug the VF. If you've used their info, visited their site, or ever think you might need to benefit from WG research, support them financially. They are the largest private donor to vasculitis research in the world, and it's totally a grassroots organization.
These docs expect us -- in fact demand that we -- educate ourselves. I can't stress this enough. As an example, my surgeon's presentation was the same one he made to a professional audience at a rheumy convention. And he said we knew more and asked better questions. Never assume that you doc knows everything about you, about your condition -- any knowledgeable doc will explain and explain again if you don't understand. As my surgeon says, if it can't be explained to you, either the surgeon doesn't know what he doing or you're not asking the right questions. It's your life.
Medicine is an art and a science, but some people are really lousy artists but like to paint anyway. That's the way it is with some local rheumy that wants to make you his test case. As one of the researchers said, 'rheumys always like to believe that they know more than they do about this disease."
I title this "I Don't know" because, I heard that answer, in every single seminar, from all of the researchers. There is much that isn't known about WG because it hasn't been studied. Again, these researchers stress, it's not good enough that someone says it worked for the patients in his practice. These guys are high on evidence-based medicine and they are in the process of gathering the evidence.
Also caveats -- I did not attend any pediatric seminars so anything I report shouldn't be taken as advice for peds patients -- I have no idea. I also didn't attend any lung, kidney or GI seminars. I did two ENTs (with my favorite surgeon) and all of the general sessions that covered a variety of topics.
Another caveat --- I may completely get something ass backwards. If Sangye says she asked Seo and he told her something different -- believe Sangye!
Random thoughts:
I think Merkel, Seo, Hoffman and Langford seem lovely and you all who have them as your docs are very lucky.
Rheumys rules the vasculitis roost. Specks (who is a pulmo and just happened into research) is continually teased on this point. The surgeons are also teased. WG is a the rheumys' wheelhouse, and secondarily for a lot of people, the nephrologist's wheelhouse.
The most dangerous things for Weggies is undertreatment or overtreatment, and just right treatment is very difficult to obtain.
These docs are extremely humble in the face of this disease. They are not afraid to tell you that they don't know or that they can't help you. If your doc isn't the same -- think about it. Is that the right doc for you? Does he know better than the world's leading experts?
These drugs are scary dangerous. People tend to forget that. Docs tend to forget that. You DESERVE a shot at living free from chemotherapy drugs and prednisone. (from Dr. Seo).
Your symptoms are real and should be treated seriously and compassionately, even if they aren't life threatening. The eye doc from mayo says that WG patients with dry eye -- dry eye! -- report a quality of life no better than people on dialysis. Hearing loss, common and overlooked in WG is extremely isolating to people already isolated by disease. When my surgeon did his talk on saddle nose -- which I have -- he talked about what it must be like living with a face that doesn't look like it did six months ago. People quit jobs, don't get married, stop going out. It can be, and frequently is, psychologically devastating. Becoming infertile can be like a death.
This is probably the most significant difference that I see in these specialists vs what you guys, and many people at the conference report that their docs are like. These docs recognize that a new normal that has all of these devastating effects simply isn't good enough. And they are working towards a better day, every day, for less than 200,000 people in the American population. Astounding!
Final note: good rheumys recognize your recognitions of your symptoms is important - even more important than your bloodwork. Paul Nachman, the neph from UNC said that he had a patient come to clinic saying, "something's just not right, and I am going to Bermuda next week, should I go?" Now Nachman does the right thing - including sending him to the pulmo and ENT in the clinic, reads his CT, checks all of his bloods out -- while he waits all day at UNC. Everything checks out fine. Nachman says go. You know what happens -- he gets terribly ill far from home. Nachman didn't say what happened, but he did say, "I don't know what else I could have done in that situation -- but I wish I had done something differently." Sobering.
So I've gone on long enough for now. Your turn.
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Originally Posted by Tulip
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