My bronchoscopy last Tuesday was even worse than I’d feared but having bitched at two different doctors since then, I’m finally done with it. Except to say I’ll do it again only at gunpoint.
Rather than repeat the whole story for at least the third time, I’ll just pull from my notes:
Wed Dec 30
Bronchoscopy yesterday. Awful experience (I woke up half way through it). The lavage part was like choking to death, coughing as hard as I could and unable to clear my lungs. Terrifying. I’ll never trust versed again. That or the personnel were incompetent. Hard to believe my experience was the typical one that I was told was “no big deal.”
Thurs Dec 31
Angry, frustrated, depressed. Still coughing after all these months, and much worse since the bronch. Lying down is just about the only relief I can get. I worry about being treated by fellows* instead of more experienced doctors and suspect the fellow who was there during my bronchoscopy might have done the procedure rather than the older doctor. Either way, I’m still having crying spells when I think about it, or would except I cough and can’t breathe when I cry.
Fri Jan 1
The pulmonologist (the fellow handling my case) called today. She was very apologetic about the bronchoscopy and said she’d never heard of anyone having that problem before. Thinks that although I had max amount of both fentanyl and versed that either they wore off and/or my metabolism is such that they just don’t work well for me. She suggested propofol in the future. (And you can bet I’ll remember.)
She said the resulting labs showed high levels of lymphocytes, indicative of either a chemical sensitivity (Herceptin?) or hypersensitivity pneumonitis. Seems to me both of these have already been mentioned repeatedly. In any case, the treatment for both is the same — high doses of prednisone for a couple of weeks (?) and then a very slow taper over weeks or months. So today I’m starting 60 mg of prednisone a day. Plus Bactrim three times a week to ward off pneumonia and other possible infections. I guess doctors have to jump through all the hoops before making decisions and prescribing, but it seemed pretty clear to me two months ago that a high dose of prednisone helped.
Assuming a possible Herceptin sensitivity, my oncologist will have to decide when or if to start me on the year-long Herceptin treatment. Tricky call since the HER2 was a borderline “equivocal” situation, positive only in a satellite node of the tumor. I’d rather have the Herceptin than not, to preclude any chance of the HER2 flaring in the future, but I can’t live with this cough for another year. In any case, he’s already made it clear he won’t start it till the cough is gone.
Sat Jan 2
Needing desperately to vent, I finally wrote a lengthy letter to the senior physician at the bronchoscopy asking, politely, what the hell happened during my procedure. He called me right away.
He said I was given additional drugs during the procedure, that he was operating the scope most of the time, that they saw no thumbs down sign from me (signaling I had a problem, but I was so panicked I forgot to do it), and that my coughing was not unusual with already irritated lungs. No great satisfaction there other than that he called — on a holiday Saturday — withing 30 minutes of my sending the email. He was personable and professional but it still sounds like in his eyes, all was pretty normal.
He thinks Herceptin was probably not a causative agent in my case (heart problems being a more common side effect), so I may yet get to have that treatment. He agrees the high dose prednisone is the way to go now. Says if it doesn’t knock everything completely, he would probably proceed to an antibiotic, azithromycin (Zithromax). Then, if necessary IVIG (or IGIV), intravenous immune globulin. He said he’d note my drug reaction (my poor response) in my chart, and agreed with my case doctor that if there is a next time, propofol should perhaps be tried instead of versed.
Meantime, I hope he’s right that within two or three days, the high dose prednisone should bring marked improvement in the cough. (I’ve lost track of how many times I’ve hoped a change of treatment would finally bring relief.)
Okay, now I’m really done with it.
“Fellows are young doctors who have completed their residency training and have opted for additional study in their chosen specialty. Fellows work under and report to more experienced doctors.