Hi Donna,
My condolences in the loss of your son. Just can't imagine the pain you've been through.
It's already been mentioned that your son needs a doctor who specializes in GPA/Wegener's. I was diagnosed at Ohio State University's medical center. I was in the hospital for five days before they diagnosed me by eliminating all the other conditions they thought I could have but didn't. I joined this forum about a year after diagnosis. My initial treatment team (pulmonologist leading with an ENT and nephrologist) really didn't have much GPA expertise (about 30 cases/year). I self-referred to a rheumatologist at Cleveland Clinic who now only sees Vasculitis (GPA is one form of Vasculitis) patients - over 700 individuals in a yeast.
I suggest that that you look at the list of consulting doctors on the Vasculitis Foundation's web site. They will often consult with your son's docs at no charge. If there's one reasonably close to your home, I hope your health insurance will cover a visit.
Please look at the different threads on here. Chances are pretty good someone has experienced something similar to your son. You'll also be able to find recommendations, advice, and a safe place to vent.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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