occupyjapan
New member
Backstory: I'm a 28 year old male with homozygous delta F508. I've had extremely good lung functions (FEV1 @ 122, FVC @ 120) for years, up until a year ago when I had a massive exacerbation. Currently, my FEV1 is in the mid-upper 80's and my FVC is 103. My doctor responded aggressively to the exacerbation, hospitalizing me and putting me on Fortaz (which he then changed to Cefepime after cultures), Meropenem, Vancomycin and Tobramycin. After my hospitalization, he sent me home on a month's worth of orals - Levofloxacin and Doxycycline. (I culture PA that doesn't have many resistances and MRSA that is sensitive to tetracyclines, linozolid, vancomycin and a few others).
At the height of my exacerbation, my FEV1 had fallen to 40 and my FVC was 70. It has since gone back up to the levels states in my opening (upper 80's and 103 respectively). However, since the exacerbation, he seems to have stopped being so aggressive and has made what I perceive to be several mistakes. I'm wondering if the rest of you share my concerns.
For starters, I have to request any change in treatment and he's really slow to adopt any new changes to regimen that might help me recover lung function. He was "on the fence" about changing me from 28 days Tobi/28 days 750mg Cipro to 28 days Tobi/28 days Cayston, despite my cultures being sensitive to aztreonam, but finally relented when I pushed the issue. Cayston made my FEV1 go up 10 points. He was similarly on the fence about putting me on hypertonic saline, but also relented. Hypersal resulted in another 6-7 point jump in FVC and a 3-4 point jump in FEV1.
I've mentioned to him over the course of many office visits that I just don't feel like Tobi "does anything" anymore. My cultures still show my PA is sensitive to it, but I just feel crappy. I've asked him if I can be put on an oral (Cipro, Azithromycin, ANYTHING) instead of the Tobi and then reserving Tobi for an additional therapy in case I start feeling sick. "No." I've asked about getting put on inhaled Colistin. "No." (And for reasons I feel are stupid - he says that Colistin is a "hassle" and is kind of gross and sticky and stuff and he doesn't like using it). I've asked about maybe being given a supplementary oral (say, 500mg Cipro or whatever, really) alongside the Tobi. "No."
Every time I start to have a mild exacerbation, he puts me on the same regimen: 500mg Cipro, 100mg Doxycycline, be it a sinus problem, lung problem, whatever. He's put me on Doxy so much that now my MRSA is resistant to tetracyclines (thanks, doc!) and he STILL puts me on it despite it being resistant. He attempted to put me on it again, a second time post-resistance diagnosis and I absolutely demanded something else this last time, which resulted in being put on linozolid (aka Zyvox), which made me feel loads better.
He's also extremely hesitant about prescribing new therapy. He keeps really up to date one stuff, and I often discuss new potential treatment options with him that are in the pipeline for the next year or two, and he's always EXTREMELY resistant to the idea of putting me on them. He'd have to "seriously put some thought into" whether he'd put me on Arikace (inhaled Amikacin) or Aeroquin (inhaled Levofloxacin). He's "not sure" about Bronchitol (though neither is the FDA, it turns out! *rimshot) and he'd "probably want to wait a while to see some post-market results" before putting me on combined Kalydeco/Lumacaftor when it comes out in the next year or so.
Recently, I felt a bit crappy and wanted some oral antibiotics to take the edge off before anything major developed. He said he wanted me to take a flu test (as in go to the local hospital that is full of flu patients in the midst of a literal flu epidemic) before he'd prescribe anything at all. I'm not one to advocate self-medication, but that was the last straw. I put myself on a high dose of ibuprofen, increased my albutoral from 2x daily to 4x daily, increased my hypersal to 4x and started doing my vest 3-4x daily as needed and I got past it myself. Knowing him, he'd have agonized over me increasing my treatments like that!
I can understand being careful with antibiotics and new therapies, since becoming resistant is a major concern and whatnot, but he just seems over-cautious to the point of absurdity. I really, really, really don't want to end up in the hospital again on a bunch of "drugs of last resort" because he can't stop agonizing about putting me on new medicines or changing my treatment.
Am I just being too sensitive or is he seriously dropping the ball here? Changing doctors shouldn't be a huge deal. I live close enough to St. Louis, MO that I could get a specialist there.
At the height of my exacerbation, my FEV1 had fallen to 40 and my FVC was 70. It has since gone back up to the levels states in my opening (upper 80's and 103 respectively). However, since the exacerbation, he seems to have stopped being so aggressive and has made what I perceive to be several mistakes. I'm wondering if the rest of you share my concerns.
For starters, I have to request any change in treatment and he's really slow to adopt any new changes to regimen that might help me recover lung function. He was "on the fence" about changing me from 28 days Tobi/28 days 750mg Cipro to 28 days Tobi/28 days Cayston, despite my cultures being sensitive to aztreonam, but finally relented when I pushed the issue. Cayston made my FEV1 go up 10 points. He was similarly on the fence about putting me on hypertonic saline, but also relented. Hypersal resulted in another 6-7 point jump in FVC and a 3-4 point jump in FEV1.
I've mentioned to him over the course of many office visits that I just don't feel like Tobi "does anything" anymore. My cultures still show my PA is sensitive to it, but I just feel crappy. I've asked him if I can be put on an oral (Cipro, Azithromycin, ANYTHING) instead of the Tobi and then reserving Tobi for an additional therapy in case I start feeling sick. "No." I've asked about getting put on inhaled Colistin. "No." (And for reasons I feel are stupid - he says that Colistin is a "hassle" and is kind of gross and sticky and stuff and he doesn't like using it). I've asked about maybe being given a supplementary oral (say, 500mg Cipro or whatever, really) alongside the Tobi. "No."
Every time I start to have a mild exacerbation, he puts me on the same regimen: 500mg Cipro, 100mg Doxycycline, be it a sinus problem, lung problem, whatever. He's put me on Doxy so much that now my MRSA is resistant to tetracyclines (thanks, doc!) and he STILL puts me on it despite it being resistant. He attempted to put me on it again, a second time post-resistance diagnosis and I absolutely demanded something else this last time, which resulted in being put on linozolid (aka Zyvox), which made me feel loads better.
He's also extremely hesitant about prescribing new therapy. He keeps really up to date one stuff, and I often discuss new potential treatment options with him that are in the pipeline for the next year or two, and he's always EXTREMELY resistant to the idea of putting me on them. He'd have to "seriously put some thought into" whether he'd put me on Arikace (inhaled Amikacin) or Aeroquin (inhaled Levofloxacin). He's "not sure" about Bronchitol (though neither is the FDA, it turns out! *rimshot) and he'd "probably want to wait a while to see some post-market results" before putting me on combined Kalydeco/Lumacaftor when it comes out in the next year or so.
Recently, I felt a bit crappy and wanted some oral antibiotics to take the edge off before anything major developed. He said he wanted me to take a flu test (as in go to the local hospital that is full of flu patients in the midst of a literal flu epidemic) before he'd prescribe anything at all. I'm not one to advocate self-medication, but that was the last straw. I put myself on a high dose of ibuprofen, increased my albutoral from 2x daily to 4x daily, increased my hypersal to 4x and started doing my vest 3-4x daily as needed and I got past it myself. Knowing him, he'd have agonized over me increasing my treatments like that!
I can understand being careful with antibiotics and new therapies, since becoming resistant is a major concern and whatnot, but he just seems over-cautious to the point of absurdity. I really, really, really don't want to end up in the hospital again on a bunch of "drugs of last resort" because he can't stop agonizing about putting me on new medicines or changing my treatment.
Am I just being too sensitive or is he seriously dropping the ball here? Changing doctors shouldn't be a huge deal. I live close enough to St. Louis, MO that I could get a specialist there.
