Your current regimen. (work oriented)

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Faust

New member
Ok, still need an answer in my GSH - Phantom Pains thread, but I also wanted to know what is the regimen you guys are on cf care wise? I'm curious, because just doing my morning nebs, i'm right at an hour into them (with no assin off) and i'm maybe 1/4 done with my last one. When I start working, I have no idea how smooth this will go, though of course it's a necessity. This is also without me doing my vest at all, which would take on an additional 40 mins easy (I do strong huffs and really cough the stuff up). I wonder how you guys who work and do all your stuff in the morning are able to deal with this BS.


Just waking up and getting a shower and getting dressed (i've done all this crap before responsibility wise, but without the morning nebs) and walking out the door takes me atleast 30-40 mins, and that's without equiping a firearm, holster, pepper spray, batton, dress shirt/possible tie, work pants, shoes, radio, etc etc.


So as an estimate, just my three nebs in the morning will take an hour and twenty minutes. My getting ready and walking out the door will take probably an hour. Now what if i'm feeling shitty cf wise, and would really like to do a vest? That would be another 40 minutes atleast tacked on.

That right there is 3 hours in the morning just to maintain my CF before work (estimattion). Even if I eliminated the morning vest and did it at night instead (which further takes away from my time to spend with my lady and relax, because i'm going to have to get to bed early, if I have a 48 hour week), that's still about two hours and twenty minutes. I could possibly eliminate the GSH neb, but I want the benefits of it.


So I guess the question is, how do you work CF's deal with all the expected stuff in the morning? Or do you say screw it and skip it (not good)? I want to keep the regimen I have now, but man, that's a SERIOUS time handicap, which means no staying up even to reasonable times to watch a few programs on TV before you crash out (what most people and myself like to do). It would probably mean going to bed at something rediculous like 9pm, to get up at say 3am (if I have to be out the door at 6am). That is just stupid in my opinion.

They need to make some type of power nebuliser that you can just take a massive deep breath in, and in one inhalation get all of that med into your lungs, maybe two huffs at most.

So what do you guys do?
 
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catboogie

New member
sean,

i allow myself 2 hours to get ready in the morning. it sucks getting up at 8 to be at work at 10, but at least i don't have to work earlier often. i don't like to be rushed in the mornings. my 2 nebs, fluttering, taking vitamins etc. probably takes at least an hour, not to mention eating, getting dressed, packing lunch, and telling my cats what wonderful creatures they are. <img src="i/expressions/face-icon-small-smile.gif" border="0">

the real problem for me comes not during the week, but during the weekend, when i am on my own time. i get up and usually want to go somewhere with my boyfriend, or do something, and i have an hour of stuff to do first! the very worst is definitly when i am on vacation...man, cf can be such a drag! <img src="i/expressions/face-icon-small-frown.gif" border="0">

laura
 
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icefisherman

New member
Well I can't answer that becasue i'm not taking anything. I have wonder what i will do when i get ins. coverage and start taking meds. I get up at 4:30 and don't get home until 7:30 as it is. there's not enough time in a day.
hope things work out.
ben
 
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CowTown

New member
My sitch is a little different, but I would maybe suggest to you to
cut the morning process down to half those things, whatever would
be most beneficial for the day and so that you wouldn't have to
wake up so darn early. Then focus really well on everything after
work. If you don't do the vest everyday now, maybe you could start
the vest everyday but after work if you're lightening the load in
the mornings. Just a thought.<br>
<br>
When I used to work out of an office, I would only do albuterol in
the mornings and then the rest of the stuff at night.
 
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Faust

New member
Dunno how bad it would be for me to do a double dose of GSH at night, instead of breaking it up twice a day like I do now. Vest at night, and eliminate the GSH in the morning and only do the albuterol + OO, then the collistin. Two nebs (especially the collistin, that's 5cc) still take a while though. I mean we all gotta make sacrifices for that almighty $$$ but man, the time involved in just trying to survive with CF is rediculous. I've known this before obviously, but trying to work and do this is insane.
 
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celtsfan

New member
Sean,<br>
<br>
I have been asking myself many similar questions as you are and
what prompted my recent post asking about the Pari eflow, which is
suppose to drastically cut down on neb times.  Since I have
added Hypertonic Saline it is putting me over the edge.  In
the mornings now I have, Duoneb, HS, and the Vest.  This takes
me about an hour and then I usually need a bit of rest after the
vest.   This does not include times when I also may
 need to add Tobi and then who knows, GSH and Azteonam
might come into the picture...   I guess it is good we
have all these different treatments now to help us, but they are
time consuming.   Luckily my job is flexible start time
(except when I have an early morning meeting), but still its
becoming troublesome for me in the morning as well.<br>
Brian
 
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LouLou

New member
I get up at 6:30 and start my regimin. I would not suggest shortening your regimin in order to get more sleep. From what I've heard 30 min. less sleep is totally worth it for medicine. Just remember that you can never make up lost time with lung damage. I don't get to work until 9:10AM. I do albuterol with OO, then while doing 15 min. of Vest I do pulmozyme, then I do TOBI. It takes 1-1:30 hrs. to complete depending on how drowsy I am. I have gotten pretty good at breathing through my mouth in my sleep. This is the one big problem with my situation. I am 50% sleeping through most of my care. For me, my AM sequence is very important because this is when I'm productive. In the evening I can't get much goods out. My evening is the same except I do HS instead of Pulmozyme and I don't sleep during it. I go to bed at 10:30-11.
 
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LouLou

New member
Oh and around a year ago I started another thing in my AM regimin that I think is very helpful. During my AM cycle I drink a big pint glass of water. Gets my day of to a great start - properly hydrated!!
 
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gsplover

New member
I am very religous on doing all my meds and vest day and night. I travel 35 minutes to and from work. So I am on a very tight schedule. I wake up about 6 am. I do my pulmozyme, hypertonic saline and the 20 minutes on the vest. I get showered and dress and out the door by 7:45. No time for breakfast. I eat a yogurt and a ceral bar and drink a cup of coffee when I get to work. I eat lunch at my desk around 11:30. During my lunch break I go do 20-30 minutes on the treadmill. When I return I eat a snack...today another yogurt. When I get home from work, I go to the gym for another 45 minutes. I might do another 20 on the treadmill and lift a few light weights. I get home from the gym around 6 or 6:30. I cook dinner, eat, relax for 1 hour. I cannot do my vest right after I eat. I normally start my hypertonic saline around 8:30 then do my vest for another 20 minutes. I do my nebs and my vest in front of the TV...that is my down time. I think sometimes my husband feels a little neglected. But he does go to the gym with me in the evening, that is why I go twice. I work a second job on the weekends. My husband hates it but it keeps me on a schedule with my meds. I need to be in at 8 am so I get up at about the same time as I do on a week day. I am on such a strict regiment, if I i over sleep I am screwed. Luckily my work is very understanding and allows me to come in late if I need to. If I am on Tobi. I get up half hour earlier and stay up a half hour later. I hope some of this helps.
 
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anonymous

New member
Can you do your vest/nebs in bed and doze? Here's what I do for DS -- we have to be work/school by 8

I get up at 6 and do DS's albuterol/atrovent with 15-20 minutes of CPT in our bed. Then I go shower while DH, gives DS his tobi. When I'm done getting ready, I get DS's morning drugs and breakfast ready -- usually it's 6:45 -- DS eats, then showers, gets dressed.

After work (5) I give DS his afternoon meds and a snack. 5:15-5:30 DH starts CPT with nebs, then Tobi (or Pulmozyme if he's not on tobi). We have supper around 6:30.

9:30 - 10 I do CPT again with nebs and pulmozyme if he's on tobi.

Liza
 
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Faust

New member
I'd love to bounce. Granted i'm not chuck norris, nor am I 300 lbs of pure muscle, and i'd have to work out some to get back to where I was before, but bouncing is about 80% psychological and communication anyways. It's fairly rare for security in say a club to have to get physical with people. Most people are fine with "You are acting like an a*s, either stop it or you have to leave".


And as far as my resume and cover letter, she did an AMAZING job with them. Was very much worth the 50 bucks. She put her heart and soul into it big time, and obviously was done by scratch and not some program.

I'm going to start sending it off to various security oriented companies tonight, one well known company in that field has three positions advertised for in my general area that start mid 20's to low 30's, with a ton of benefits, and i'll finally be able to be "the man" authority wise and be armed <img src="i/expressions/face-icon-small-smile.gif" border="0">


The only problem with that though, I won't get the benefit of having that safety net of the 9 month "back to work" trial period via social. So it's a leap of faith I guess. I hope I don't get sick and end up screwing myself. Besides that, some major changes are going to have to take place around this house to make it much more conducive to sleep, especially if i'm working weird hours. Dogs, frequent visits from the niece (who screams constantly), sister coming over to spend time and cackle like a witch, tons of changes in order to fasciliate working with an already time restrictive schedule.


I could probably do the collistin in the car with my pari Trek compressor, problem is it takes so darn long, i'd probably still be doing it when I showed up wherever I had to be.
 
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littledebbie

New member
Ughhh, there just isn't enough time in the day. I think for me I decided that I could stay home and do everything I'm supposed to (knowing me that would last a week) and be miserable and dependant on a meager SSI check that doesn't really pay the bills. Or I could half ash my care and go to work. I am personally a happier person working. And what do we always say class...."a <i>happier</i> person is a <i>healthier</i> person".... *sigh* Group hug!

I did finally decide full time was going to put me into an even earlier grave than probably necessary and lowered my hours to 30. So now I have a compromise of health care and work, can't have it all might as well have a little of both.

So I do nadda in the a.m. I know, I know...*boo hiss jeers from the crowd*. I swear though that i need the sleep more, if I cut too much sleep I'll guaranteed get sick. Then I come home (5:30) and do tobi and pulmozyme and h2O OO, then i do tobi again at about 10pm. The tobi for me is month on month off but then I switch to colliston on my off months so I'm always doing one or the other.

Oh I also take a load of pills in there too but that doesn't really slow a person down so i didn't mention it.

Also, I do my own little lung clearance routine in the a.m after i get out of the shower, but it's my own thing not any prescribed to method.

My CF probably slows me down by 30 minutes in the a.m right now. Although since changing my time I will proably switch one of those tobi treatments soon. Probably not the best but better than a kick in the head ehh? You'll find your own rythem that is the best compromise of time and care for you, but i would not try to hang on to the "must do it all" thinking and try to focus on the "must have a balanced life" balloon.

Maybe you could start practicing now like you are trying to leave at 7:45am or something and try it for a week see how you feel, adjust your stuff do a few comparison trial runs. Make a study - share it with us, charts, graphs, mind maps!!! <img src="i/expressions/devil.gif" border="0">

editing: wow reading all these, I am definitely the step child here huh? Good job to you guys.
 
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anonymous

New member
I'm up at 4:30 to be out the door a little after 7. It's a b-tch, yes, but part of me enjoys that morning time. And by 8, I've got the drop on the world!
 
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anonymous

New member
I always shower right away so I dont fall asleep again. Then the vest and albut neb (30 min). For my second neb that doesn't need the vest, I have a long extention cord in my bedroom that I plug my neb into and carry it back and forth between the bedroom and bathroom to finish getting ready.

If Im running short on time, I do the same with my albut neb and double the vest at night when I'm watching tv.

It saves me alot of time, but I'm also a girl and probably take more time to get ready anyway <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
The new Pari e-flow is much faster than other nebulizers and its very small and makes no noise at all, so you could use it during the day when you have a break.The only problem is that I personally would not use it for inhaling the oil, because its a bit sensitive and might not work very long with the oil.


Uli,43,Germany

uli_1.jpg[IMG]
 
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Ryleigh

New member
I always do my vest during my nebs so that helps cut time but still
takes an hour morn. and night.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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