The Guru has Spoken - Dec. 12, 2008

Yesterday was the big day for me to finally be seen by the world's expert on ABPA. My appointment took an astounding 5 hours. Ironically, we could have used more time. Mike flew in from WA and drove me up to Northwestern University Medical Center in Chicago. We were fully prepared with our list of questions about prognosis and treatment, but we never got to a single one of them in the 5 hours. Basically, Dr. Greenberger did testing to confirm the diagnosis. This is the only facility in the world that does the definitive blood test for ABPA. To be diagnosed with ABPA, there are several criteria, and this blood test is the last one. All the other testing was repeated yesterday and was positive for it. The blood testing is a 4 step process and won't be back for 2 weeks. At that point I will have a follow up appointment with Dr. Greenberger, and then we will get to some of those looming questions.

We really don't have an answer yet for anything. I think that is the long and short version of the appointment! The good news from yesterday is that I get to discontinue one of my medications (new tally: 22 meds). Party on, Garth! The cunundrum is that I don't fit stererotypical anaphylaxis. Dr. Greenberger isn't sure if it is a stricture in my throat or my vocal cords when I am exposed to aspergillus. This means I get to go see another doctor, ENT, to try to figure this out. He did say my case is "complicated".....how encouraging coming from the world's leading expert on aspergillus diseases. Yikes.

We did receive a bit of wonderful news about the attorney that we wanted to represent us in our case with the ridgevent installation. He is taking our case! This is awesome because he can literally pick and choose his cases. It took several months of review before we were given this committment. Answered prayer.

So, that is the update. Thanks every one for the text messages and phone messages yesterday letting me know you were thinking of us on our journey to the aspergillus guru. It was a monumental day, we just don't have the information from it yet to share with you all.