Hi all,
Well, it was nice being a boring patient for a week. We met with the E.N.T. today, and he took us out of the boring patient category, and back into the "we're not quite sure why this is happening" category.
He sent the excised tissue off to pathology and he had expected to see straight up scar tissue and inflammation. Those were present in the pathology report, but there were also granulomas present. If his original diagnosis was correct and complete, there would be no granulomas. So, he thinks it is 'sarcoidosis' which is an auto-immune disorder. The pulmonologist, who we have not seen since the procedure a week ago, apparently does not agree with the diagnosis.
The E.N.T. (who shall remain nameless in this blog) is sticking to his reflux diagnosis and is telling Karee she absolutely needs to be on that medication, (proton-pump inhibitors, or PPI) likely for the rest of her life. We would beg to differ.
From our perspective, Karee has had diminishing lung function over the last X years (3 years? 7?) and thanks to their excellent and skilled intervention, she now has two, beautiful, healthy, fully functioning lungs again. I gotta think that her body deserves some type of adjustment period to work out the kinks, and not be thrown all kinds of meds that will fight symptoms and not causes that aren't even yet fully understood!
So, when Karee told our dear E.N.T. friend that she wouldn't take them for at least 6 months, he went on a bit of a tirade, and said that he wouldn't treat her any more, that if she wouldn't follow his treatment regimen, he wouldn't remain legally and medically responsible for her. He went on to say a bunch of "if this" and "if that"s, and "if this then there's a 14% chance of C_______"...
Well, we're kind of glad to see the back side of this particular doc, who had done nothing to increase our appreciation for all things allopathic. We will be scheduling a follow up appointment with our pulmonologist (who we really do like) as well as an appointment with a new, improved (hopefully) E.N.T. very soon as well.
Karee is still taking steroids from the procedure last week, to keep her trachea and lungs 'calm' and under control. Ironically, they are making Karee anything but 'calm'- she's sleeping 3-4 hours a night, and walks around feeling like she's on a nasty caffeine buzz.
Sigh. Summer is upon us, though the kids still have a few days of school left, and we're hoping to get to unwind some - we do NOT want a summer of doctors and hospitals!
All for now. Happy June everyone!
Steve (and Karee)
