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.
Cancer: Curves Ahead 
Hopefully, this time, there will be some real progress.
No kidding. I’m practically counting the minutes …
So along with the Brontosaurus for Christmas you got a Prenocephale. “Forward bending with nodes”…Scope out the Ornithischia order. For goodness sakes. All that would be enough to send you to outer Mongolia.
Gads – sounds like my worst nightmare. (Shiver…thoughts of Edgar Allen Poe…)
Not sure about your medical team, but usually there’s a great deal of competition for fellowship positions so they should have the pick of the litter. But having said that, CO med schools/programs always favor their own state’s applicants and there’s always politics involved. Also different programs have different lengths of residencies. Surgeons usually have 5yrs surgical residency before fellowships, but scoping is an entirely different field, so it may be less. It’s a crap shoot: sometimes the new kids are better/more compassionate than the old guard. At least the guy called. (Not that it helped)
Two things I’ve learned: patient always has the right to insist on Sr Doc in charge of the program…and if undergoing a procedure, always ask the doc doing the work “How long have you been on call?” (Hospital corporations are routinely running surgeons for 3 days to 4 days on call – that means in busy times(holidays or weekends) anywhere from 72-96 hrs with very little sleep…all about money for the corporations – best patient care not the rule any more. Few docs have much control anymore over treatments and sequence of treatments/meds).
Interesting he’s waiting for azithromycin /Zithromax. But they’ve got their steps and patterns to match up with your other treatments.
Pet that puppy! Supposed to help immune system. Hope you’re getting some relief.
I called the day before and specifically asked which doctor would be doing my procedure and was told the senior doc. And he said he did it. I’m fully aware teaching hospitals have to teach and young docs have to start somewhere. But not on me. That’s why I called. Can only assume the versed wore off. Will never, ever again agree to its use. As for the Zithromax, etc., he was only commenting on what he’d likely do if I were his patient, which I’m not. And the fellow who has my case (and has seemed really smart) reports to a different senior doc. Still, I appreciated the input; I figure the more docs who get their opinions into this, the better off I’ll be, provided they mostly agree.
Gonna pet all the hair off the puppy, and the kitty too.
Do you ever feel like you are on a Merry-go-round or doesy-doe square dance whirling between docs? Sure sounds that way. As you say, the more you know and get medical people to talk, the better.
Pets rock!
The merry-go-round didn’t start until my oncologist referred me to pulmonology, and the pulmonologist he’d been consulting with couldn’t see me until February. I didn’t want to wait (or cough) that long. I am getting a bit dizzy though. I see the onc again on the 12th; he’s my primary cancer doc/coordinator, answerer of all questions, and hand-holder-in-chief. He’ll make sense of it all.
Not only is the treatment complex, so is the spinning among the team.
It’s a good thing you are medically knowledgable and involved in your treatment. I can’t help but wonder if a more placid patient might receive less attentive and collegial treatment. And, I appreciate the reminder about the involvement of “fellows”. This week I will be having a fairly large squamous cell carcinogen excised from my jaw and I will be sure to insist that the doc does it himself. My last visit with him, there was a “fellow” trailing behind him.
Best of luck with the prednisone. You’re a trooper.
I don’t mind in the least when fellows or residents shadow their attendings. But yes, I insist on any hands-on treatment being done by the senior physician. I’m sure they get tired of hearing “I’m a doctor’s kid and a retired medical editor” (and I’m self-conscious about saying it) but I want the doctors to know I know a thing or two too. It tends to elevate the conversation.
My very best wishes on your surgery this week. Squamous cell carcinoma is serious business. You’ll be in my thoughts.
Indeed it does. I’ve found that doctors talk less to me like I’m a dumkopf and more like a colleague when I tell them what I do and who I’ve written for.
Not to mention the time saved when you can skip the “how to boil water” lessons.
Thanks, PT.
Jim, thinking about you and hoping your excision went well. Wishing you a speedy recovery.
Indeed it did go well. I had it done last Thursday. I couldn’t tolerate the clindamycin that was prescribed (stomach ache), but so far there’s no sign of infection. The incision is about 2 1/2 inches long and is more vertical than I anticipated, going from under the lobe of the ear downward. The doc had frozen sections checked the same day and says he got it all. Yay. The skin feels a little tight – bonus partial-face lift. : ) Stitches come out this Wednesday.
Thanks for thinking of me, PT. I think of you as well and discuss your progress with Mollie. She asks.
Only a partial face lift? He should have given you a discount to match up the other side. So glad to hear all went well, despite the clindamycin intolerance. Darn side effects anyway. Guess now you’ll have to come up with some good war story to explain the scar — you fell against a bulkhead while racing topside?
Give Mollie my love. So sweet of her to ask about me.
Hi! My friend zenzalei put me onto your blog as you and I are having similar Happy Funtimes at the moment. It’s been really useful hearing about your respiratory difficulties (sorry! – Not making light of your situation but couldn’t think of a better word than ‘useful’) and has given me some things to talk to my consultant about next week. Thanks! 🙂
Hi, Sarah.
So sorry to hear you are dealing with similar problems. Wouldn’t wish this on anyone. I, too, have an appointment next week with my oncologist and am hoping I’ll come away with a better understanding of my situation. I feel I sort of know what caused the lung problems and that the prednisone is probably the proper treatment right now, but I still have a lot of questions about how long this is likely to continue, what the long term prognosis is, whether or not I’ll ever get the Herceptin treatments, and what are the risks if I don’t. And I suspect there won’t be any definite answers to any of my questions. Currently I don’t even have the satisfaction of telling myself, “Yes, the cough is definitely improving.” My son says he thinks it is, but I just can’t tell from day to day.
All the best to you!