Re: Where do I go from here?

[Guest guest]

... I wish I had some answers for you but all I can do is send along a prayer and a hug. You do seem to be between a rock and a hard place. If there are not 'answers' maybe there can be good palliative care now. Keep talking to your doc.

God Bless...

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Where do I go from here?

I went to a new pulmonary specialist yesterday. I was tired of not getting any definitive answers from my current doctor. She requested all my tests results, the last CAT scan and bronchoscope results from my current pulmo dude and any pertinent information from my PCP. She explained what she found by reviewing everything.It was confirmed that I do have (P-ANCA) vasculitis. Vasculitis is inflammation of the blood vessels. My bronchoscope showed no vasculitis in the sections of the biopsies that were performed. We spoke of an open lung biopsy. She feels it would be out of the question since I would have great difficulty recuperating.She explained that I belong on a lung transplant list. BUT, since I have AIDS, I would be immediately rejected. The only possible drug I can take for any inflammation would be prednisone. I explained that prednisone makes me a diabetic. She said that I could start on a low dose of approx. 25mg. If need be, I would have to take insulin shots.What am I supposed to do now? I'm really frightened!