Originally Posted by
annekat
Thanks for sharing your mom's age, mrtmeo, as I was curious. 76 is still young enough to reasonably expect some good years ahead and her life is certainly worth saving. I suppose you might consider finding another doctor, or consulting with a recognized vasculitis expert via the VF; I know you are familiar with all that. I'm not one to talk because I'm being treated by a pulmonologist who is not a WG expert, but then I don't have a difficult or unusually severe case so far and am doing well. But many of us use a rheumatologist as our main overseeing doc, as I'm sure you know, and still have the rest of the team such as nephrologists, ENTs, pulmys. One of our illustrious members who passed away, Al, used only a nephrologist because that was his main issue, and that is not unheard of. That wasn't what killed him, however; it was a massive blood infection presumably from something he was exposed to and couldn't fight off in his immunosuppressed state. I believe he was on Imuran and something like 9mg. pred, and not hospitalized before becoming gravely sick, but pursuing his usual interests and activities. The point was he was a smart man and knew a lot about WG but didn't think he needed to see anyone but his nephrologist, whom he thought highly of and I presume had some vasculitis experience. So I guess that's what you'd like to think of your mom's doc, although it's becoming clear you have doubts. I understand the difficulty of changing docs, though... you don't know the next one will be any better, etc. Best wishes in dealing with this difficult situation; it is a lot of weight on your shoulders. Best to your mom. Was she not on RTX and scheduled for another infusion at some point?
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