Gosh, where to begin. Saw the Mayo Pulmonologist today. He doesn't think I have Wegener's (my lungs are perfectly clear.) He thinks I have another very rare disease called Fibrosing Mediastinitis, in my case probably caused by Histoplasmosis. There is an idiopathic FM also.
FM, in my case, is presenting as a 1.5" x 1.2" calcified mass in the mediastinum more to the right side.It's encroaching on the right bronch and is what has most likely caused the collapse of the middle and lower right lobes. I'm just hoping that it hasn't gotten to the superior vena cava or one of the other heart vessels. *sigh*
Treatment is squirrely and I'll know more after he talks to the thoracic surgeons, however, it could be that I'll end up having the two lobes removed to help me breath better and get off oxygen. At least he says that's what will happen if they are removed.
If the two lobes can't be reinflated it's best to remove them as they can get infected. In fact the fever I've had could be that.
Here are a couple of links if anyone is interested in learning about it. Only a couple of hundred people in the US have this fine disease. How could I get so lucky. From one frying pan to another.
Fibrosing Mediastinitis | Report
http://www.fibrosing-mediastinitis.c...011%20copy.pdf
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