Had my consultation yesterday! I HATE DOCTORS! I REALLY DO!!
Here is some things he said:
1) Haller index's are pointless and he intends on writing a paper to prove it. I said, "well insurance companies don't see it that way" and he said, "they will after I write my paper"
2) PE doesn't affect the lungs and since my heart is fine it must be something else. He said, usually the biggest deal with PE is affecting the heart, not the lungs" I said, "i have read studies that contradict that" He said "No its usually the heart, it can affect the lungs, but that is RARE" (I wanted to pop off, "hi my name is rare, its nice to meet you!" but in a paper gown, my confidence to be smarmy was weak)
3) Due to the first surgery where my intercostal cartilage was removed, it has calcified and it is too ridged /stable to be a candidate for the Nuss
4) he had NO idea what asphyxiating chondrodystrophy was. which is what prof. schaar suggested I had...
5) He didn't think any surgery would improve my lung capacity
6) He thinks it is mainly a problem with my lung diffusion. I asked him, "okay lets take pe out of this equation, if I came to you-with a diffusion problem, what would you do to fix it?" No answer.
7) I asked him if constricted lungs throughout my life would cause lung diffusion problems. he said, "no"
I left the office crying. He basically said, go back to the pulmonary doc, you will find your answers there. But the pulmonary doctor says its airway constriction with a weak diaphragm.
I am overwhelmed with the feeling of defeat, very rarely in my life have I let something weight me down for so long (okay-okay, its not that long since the visit with Dr. Idiot, about 24hours) but typically I would have spent my planning period calling, researching, and figuring out my next step. Today? I sat and stared at my computer, mustered up some nerve to call a doctor in San Diego, but was put on hold and talked myself into hanging up.
My biggest fear is that I will be stuck like this for the rest of my life.
I am scared that I will drift into a place I can not return from....