Sunday, August 24, 2008

One in a Million

I've been mulling over conversations I had with my pulmonologist (Dr. Horak) and hematologist (Dr. Forman) last Thursday.

Dr. Horak used the term "eosinophillic pneumonia" to describe my condition. It is an extremely rare form of pneumonia that, according to one website, strikes .1 in 100,000. That's one in a million. This condition usually responds quickly (within a week) to Prednisone. But I've been on high-dose Prednisone for 20 days now without lung improvement.

When I met with Dr. Forman, he also talked about the eosinophils, but added that they suspected something else was going on simultaneously. "So we're looking at possibly two very rare things going on with you."

All I could think was, "Which rare thing?" I'm in remission from my "rare"cancer, Mantle Cell Lymphoma. I had to stop treatment for my "rare" skin disorder, Cutis Laxa. (The Minocyclin may still be a suspect.) Now, you mean to tell me I have two more rare things to contend with?

I was elated to be feeling a "little better" on Friday and hoped that this would be a trend, but it hasn't continued. The dizziness is becoming a problem again. Yesterday, I blacked out and found myself lying on the hard ceramic tile in the bathroom. I bruised a leg, scratched an arm and bumped a noggin on the way down.

I'll be back at the City of Hope on Thursday, and we'll have the lab results from a lot of blood tests and we'll see if my lungs are improving.


Nancy said...

OMG!!! I'm sorry, I know you don't want to hear this, but I think they should admit you just until they can figure this out and begin proper treatment! It's dangerous and I'm afraid for you. Please take care. Call me, I can help you day or night!!!! love, n

Trish said...

okey girlfriend---it MUST be the knocks on the noggin that're giving you the trouble!

seriously, if you're going to keep going down, at LEAST wear a helmet and knee pads!

welcome to the "gee, that's weird club" commentary from your docs. I too am tired of them telling me "Wow, I've never seen THAT before!". Just remember, we are SPECIAL, in GOOD way, riiiight?

as a note, I might second what nancy had to say about checking in for a bit to CoH. Sucks, but is safer for everyone.


Idelle Davidson said...

Thinking of you...