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[personal profile] addyit
 just had a disturbing memory.
i remember my first bronchoscopy, and how difficult it was because the IV wasn't placed correctly. they were trying to get into a MAC cavity to see the state of things, and to perhaps drain it, culture it, etc. 
afterwards, my respirologist, who is normally very cool and calm, was very visibly upset. they couldn't enter it because it was in an odd place (like mine usually are), and what upset him most was, in his own words were, "the rest of the lung is FINE. it's PERFECT! good tissue, good color, nothing wrong!"
he wasn't the physician in charge of me when this cavity suddenly blew up, though there had been signs. the physician (who was sure i could trust, and only want to be seen by, since i knew her and was sure she'd remember me) missed the warning signs. she was partially retired, and because it was in another clinic, not at my usual setting, things got missed and messed up. so, in the process of this 6 months, perhaps longer, this cavity popped up (the size of a fist) and nearly led me to lose 2/3 of my right lung. 
this is where i first learnt the real meaning of the word "incompetence": in that, those who are incompetent do not realize that is what they are. i got more information from other doctors in the Center for Disease Control (whom i didn't trust as much) in regards to my lungs than i got from her in that time... and since she was the one who had confirmed my initial diagnosis, it really deadened something inside me to this particular doctor. 
she was brilliant. she WAS on the money. but it just doesn't seem to work as well when these doctors partially retire. it comes to a time when they've seen too much death, they outright just tell parents or patients to prepare for death (which outrages them, as you can imagine) to make them realize that it is time to retire, or partially retire. 
when you lose the sense of hope, the sense of focus, the sense of possibility of survival and life in spite of seeing so much death, when you MISS things or brush it off... it's time to move on. 
i think something huge when on at my CF Clinic when the MAC cavity appeared, and somehow, this doc had NO notes, or knowledge that it was coming until it was there, BANG, full and filling with fluid. yes, i had no symptoms. but how can i continue to see her and be easy in her presence after this. 
i can't... because she has still failed to recognize her own incompetence. she had been ready to take me off my MAC meds because they had done all they could do (until she saw the cavity in my x-ray, where in CT, it was the size of a fecking FIST). and, later on, finding out i was on the WRONG set of meds all that time. whereupon changing them, taking them, the cavity shrunk and i've now been MAC-free for months. all it took was to send a sputum sample to a relatively isolated lab in... Texas, i think. sure, we don't do that for everyone, but with someone with CF and aspergillus as well, i would think the effort could have been made.... and it certainly was once the main doctors of the Center for Disease Control got involved. 
i lose a good deal of lung function because of this. but? i didn't lose 2/3s of a lung. not yet. i had my surgery date set and everything. 
THIS is why i like to try medications before surgery. most surgeons are all blade-happy, but i had one who was willing to TRY the meds first, just in case they worked- and they did.
i must be aware of semi-retired doctors. once out of the game, they lose the stamina. not their fault. but... must be aware. 


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My Crohnie/CF Appendix.

April 2015

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