saveferris2009
New member
ask a physician.
it's basic microbiology / infectious disease control 101.
bottomline is this: the CF game is won on the margin. i'll use an analogy from the book by Atul Gawade (if you haven't read it, i highly recommend you get it) who also wrote the Bell Curve article.
think of manufacturing trinkets. just a tiny little deviation and suddenly the trinket isn't the same as the others.
those centers who have patients who live longer aren't doing too much that's dramatically different than other centers. just a few minor adjustments, played out over years and years, add up to something.
the Bell Curve article talks about this too - your daily chances of getting sick if you do your treatments vs your daily chancs of not doing treatments. if you look at the stat on just one day, 0.005, versus not doing meds which is 0.05, who really cares. but over a year, therein lies the difference. 83% chance of staying well in a year if you're compliant versus 16% chance if you're not. (i get that these #s aren't absolute for everyone, yadi yadi yadi, but if you focus on that, you're missing the big point).
point being - in my opinion, you're crazy if you don't jump on every margin you can, year after year. because that's where you end up (for the most part, i get it, not everyone) on the far right end of the bell curve. it's not the standard stuff that everyone does - it's going above and beyond, being 100% compliant, not 95%; sterilizing nebs 100% of the time after every use, not just every other time; being aggressive with antibiotics and not waiting that extra week to see if you feel better even though in your heart you know you won't; those tiny little decisions, made correctly year after year - well you see the results. the results are housed in Minnesota.
really, it's up to you whether you do these things. my life is no better off if you do these things. but my life is better of because i do these things.
and hell, they're so easy to do! pop something in the dishwasher, sterilize and clean, come back 60 min later, take the things out, and you're done.
you do that for the plates you eat off of - how could you not want to do that for a device that reaches to the deepest depths of your lungs!!!
it's basic microbiology / infectious disease control 101.
bottomline is this: the CF game is won on the margin. i'll use an analogy from the book by Atul Gawade (if you haven't read it, i highly recommend you get it) who also wrote the Bell Curve article.
think of manufacturing trinkets. just a tiny little deviation and suddenly the trinket isn't the same as the others.
those centers who have patients who live longer aren't doing too much that's dramatically different than other centers. just a few minor adjustments, played out over years and years, add up to something.
the Bell Curve article talks about this too - your daily chances of getting sick if you do your treatments vs your daily chancs of not doing treatments. if you look at the stat on just one day, 0.005, versus not doing meds which is 0.05, who really cares. but over a year, therein lies the difference. 83% chance of staying well in a year if you're compliant versus 16% chance if you're not. (i get that these #s aren't absolute for everyone, yadi yadi yadi, but if you focus on that, you're missing the big point).
point being - in my opinion, you're crazy if you don't jump on every margin you can, year after year. because that's where you end up (for the most part, i get it, not everyone) on the far right end of the bell curve. it's not the standard stuff that everyone does - it's going above and beyond, being 100% compliant, not 95%; sterilizing nebs 100% of the time after every use, not just every other time; being aggressive with antibiotics and not waiting that extra week to see if you feel better even though in your heart you know you won't; those tiny little decisions, made correctly year after year - well you see the results. the results are housed in Minnesota.
really, it's up to you whether you do these things. my life is no better off if you do these things. but my life is better of because i do these things.
and hell, they're so easy to do! pop something in the dishwasher, sterilize and clean, come back 60 min later, take the things out, and you're done.
you do that for the plates you eat off of - how could you not want to do that for a device that reaches to the deepest depths of your lungs!!!