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Hi Chelee,
You do have a very difficult case and I'm sorry for the frustration and anxiety you are experiencing. You are right, it was very inconsiderate that someone from the team did not get back to you. It sounds as if your pulmonary doctor is the most on top of things. Perhaps you could make an appointment with him, vent your fear and frustration, and get some advice. If that doesn't work, you will probably want to get a second opinion.
Good luck,
Barbara H.
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