Thursday, February 20, 2014


It's been a long and twisty journey to get to this place. Over 90 days of suffering and getting no answers. After Mayo Clinic last week & yesterday at The University of Chicago Medicine Duchossois Center for Advanced Medicine (DCAM) - Finally a diagnosis: Bronchiolitis Obliterans (Drug Induced). A long process has begun but at least we know what we're dealing with. And I'm FINALLY getting oxygen!

The Lung Transplant doctor yesterday was all one could ask for - caring, kind, brilliant, determined, concerned for my well being. This was a very small first step in the process. He promised to help me "one way or another" so that is reassuring. He listened and asked lots of questions about IC; I think he was impressed with my knowledge on the subject and the fact that I am and educated patient and that I came so prepared with all the information he needed when he asked for it.

I have a lot to process, as I keep saying, but it is true. This is rare and you never think you're the one it's going to happen to. But here I am.

But - Finally - the right diagnosis! No matter the news, to me, just to know that the doctors (the best in the world) have told me this is not in my head. I am very sick and this is very serious. Well, there is a kind of relief in knowing that. 

Now, we take it one step at a time and see what he recommends. The doctor will be meeting on Monday with his entire team to discuss my case, which he says is extremely complicated and complex. I will hear from him after that about their conclusions.

Until then, I can't wait for my oxygen to get here and I wait. I've never been good at waiting, but wait I must. More to follow.

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