F/U Poll for CFers Who Work Full Time

[meghansmama]

Ive been lurking here for awhile, so here is my first post.

I wanted to respond to Kristen about doing nebs in the car. I have a portable compressor that I think is made by Pari. I discovered the product at a CF patient information night. It weighs less than 2lbs, it is great for travel and right now mine is at work. I leave it in my desk, comes with a car charger and everything. It is good only for 30 min or so but it works like a charm for squeezing in a treatment at my desk.

My routine is to two to three treatments a day with Pulmozyme, and hypertonic. I do albuterol but with an inhaler not nebulized. I exercise a few times a week, not much right now, because the weather is still good enough to walk outside. Every other month I do inhaled Tobi. Sleep is 7-8 hours a night I guess. I have a 3 and half year old girl, so sleep varies with her sometimes!

Meghansmama

 

[meghansmama]

Ive been lurking here for awhile, so here is my first post.

I wanted to respond to Kristen about doing nebs in the car. I have a portable compressor that I think is made by Pari. I discovered the product at a CF patient information night. It weighs less than 2lbs, it is great for travel and right now mine is at work. I leave it in my desk, comes with a car charger and everything. It is good only for 30 min or so but it works like a charm for squeezing in a treatment at my desk.

My routine is to two to three treatments a day with Pulmozyme, and hypertonic. I do albuterol but with an inhaler not nebulized. I exercise a few times a week, not much right now, because the weather is still good enough to walk outside. Every other month I do inhaled Tobi. Sleep is 7-8 hours a night I guess. I have a 3 and half year old girl, so sleep varies with her sometimes!

Meghansmama

 

[meghansmama]

Ive been lurking here for awhile, so here is my first post.

I wanted to respond to Kristen about doing nebs in the car. I have a portable compressor that I think is made by Pari. I discovered the product at a CF patient information night. It weighs less than 2lbs, it is great for travel and right now mine is at work. I leave it in my desk, comes with a car charger and everything. It is good only for 30 min or so but it works like a charm for squeezing in a treatment at my desk.

My routine is to two to three treatments a day with Pulmozyme, and hypertonic. I do albuterol but with an inhaler not nebulized. I exercise a few times a week, not much right now, because the weather is still good enough to walk outside. Every other month I do inhaled Tobi. Sleep is 7-8 hours a night I guess. I have a 3 and half year old girl, so sleep varies with her sometimes!

Meghansmama

 

[meghansmama]

Ive been lurking here for awhile, so here is my first post.

I wanted to respond to Kristen about doing nebs in the car. I have a portable compressor that I think is made by Pari. I discovered the product at a CF patient information night. It weighs less than 2lbs, it is great for travel and right now mine is at work. I leave it in my desk, comes with a car charger and everything. It is good only for 30 min or so but it works like a charm for squeezing in a treatment at my desk.

My routine is to two to three treatments a day with Pulmozyme, and hypertonic. I do albuterol but with an inhaler not nebulized. I exercise a few times a week, not much right now, because the weather is still good enough to walk outside. Every other month I do inhaled Tobi. Sleep is 7-8 hours a night I guess. I have a 3 and half year old girl, so sleep varies with her sometimes!

Meghansmama

 

[meghansmama]

Ive been lurking here for awhile, so here is my first post.
<br />
<br />I wanted to respond to Kristen about doing nebs in the car. I have a portable compressor that I think is made by Pari. I discovered the product at a CF patient information night. It weighs less than 2lbs, it is great for travel and right now mine is at work. I leave it in my desk, comes with a car charger and everything. It is good only for 30 min or so but it works like a charm for squeezing in a treatment at my desk.
<br />
<br />My routine is to two to three treatments a day with Pulmozyme, and hypertonic. I do albuterol but with an inhaler not nebulized. I exercise a few times a week, not much right now, because the weather is still good enough to walk outside. Every other month I do inhaled Tobi. Sleep is 7-8 hours a night I guess. I have a 3 and half year old girl, so sleep varies with her sometimes!
<br />
<br />Meghansmama

 

[Rokiss12]

kristen- you can use your own nebulizer that will provide enough power to do the neb correctly by buying a adapter from a radio shack type of place. i used to have a portable one especially made for the car- it could charge so it was wireless- but my dr told me it wasnt strong enough.

funny story about doing nebs in the car- got pulled over once.. he claimed it was because my sticker was expired, but he couldnt see the sticker from where he was on the road. he just thought i was doing a hookah on the way to school at 7 in the morning, lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Rokiss12]

kristen- you can use your own nebulizer that will provide enough power to do the neb correctly by buying a adapter from a radio shack type of place. i used to have a portable one especially made for the car- it could charge so it was wireless- but my dr told me it wasnt strong enough.

funny story about doing nebs in the car- got pulled over once.. he claimed it was because my sticker was expired, but he couldnt see the sticker from where he was on the road. he just thought i was doing a hookah on the way to school at 7 in the morning, lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Rokiss12]

kristen- you can use your own nebulizer that will provide enough power to do the neb correctly by buying a adapter from a radio shack type of place. i used to have a portable one especially made for the car- it could charge so it was wireless- but my dr told me it wasnt strong enough.

funny story about doing nebs in the car- got pulled over once.. he claimed it was because my sticker was expired, but he couldnt see the sticker from where he was on the road. he just thought i was doing a hookah on the way to school at 7 in the morning, lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Rokiss12]

kristen- you can use your own nebulizer that will provide enough power to do the neb correctly by buying a adapter from a radio shack type of place. i used to have a portable one especially made for the car- it could charge so it was wireless- but my dr told me it wasnt strong enough.

funny story about doing nebs in the car- got pulled over once.. he claimed it was because my sticker was expired, but he couldnt see the sticker from where he was on the road. he just thought i was doing a hookah on the way to school at 7 in the morning, lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Rokiss12]

kristen- you can use your own nebulizer that will provide enough power to do the neb correctly by buying a adapter from a radio shack type of place. i used to have a portable one especially made for the car- it could charge so it was wireless- but my dr told me it wasnt strong enough.
<br />
<br />funny story about doing nebs in the car- got pulled over once.. he claimed it was because my sticker was expired, but he couldnt see the sticker from where he was on the road. he just thought i was doing a hookah on the way to school at 7 in the morning, lol <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>

I am amazed at how much some people squeeze in! So now I am curious:



1) What is your treatment regimen (how long does it take)? (eg Nebulized Meds, Chest PT, and exercise)



2) How many hours of sleep do you usually get?</end quote></div>

1) I take a plate-ful of supplements in the evening before going to sleep.

I eat a special diet, which takes about the same time as eating a crappy diet and has helped me eliminate nebulizers, ER visits, etc so it's a major time-saver for me.

I no longer own a car, so I do a certain amount of walking during the week just to get groceries, run errands, and sometimes even to get to work (most of the time I carpool, but when overtime is offered, I sometimes walk to work to get there early). It really doesn't take me that much more time to walk to the nearby stores than it did to drive and when you calculate how many hours per month of my labor went towards car payments and all the other costs of owning a car (gas, insurance, tag, title, maintenance), I feel I have way more time available now that I don't own a car.

I irrigate my sinuses twice a day. My 21 year old son usually boils my syringe for me and mixes up my solution. So it probably takes me a minute or two to actually irrigate my sinuses. Sometimes I have to boil it and all that. It doesn't take that much hands-on time. I can do other things while it boils. Add maybe five more minutes of my time when I have to prep it myself.

I take a few more supplements in the morning and here lately I take a few supplements to work instead of keeping dayquil in my desk like I used to. All of that amounts to a few seconds here, a few seconds there to pop pills in my mouth and swallow and to stick a few pills in a ziploc bag and toss it in to my lunch.

I take guaifenisen in the morning. Some mornings, I take a single pill. Other mornings, I take a half dose which takes a little more work because half the time I have to cut in half (the other half of the time, I take the leftover half pill from the day before). This is the only drug I am still on.

For chest therapy, I cough hard in the shower. If I have been exposed to something, I take a hotter shower, stay in longer and cough more.

I put carmex in my nose at least twice a day, before leaving for work and before going to sleep and sometimes once more while at work. It also takes very little time, even with washing my hands both before and after.

I wipe my desk down with peroxide, as well as my chair and keyboard, before I sit down. And I get my snacks and drinks all set up. I usually get to work a little early because this prep stuff takes me about 10 minutes.


2) Here lately, about 7 hours, give or take 30 minutes. I used to sleep quite a lot more.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>

I am amazed at how much some people squeeze in! So now I am curious:



1) What is your treatment regimen (how long does it take)? (eg Nebulized Meds, Chest PT, and exercise)



2) How many hours of sleep do you usually get?</end quote></div>

1) I take a plate-ful of supplements in the evening before going to sleep.

I eat a special diet, which takes about the same time as eating a crappy diet and has helped me eliminate nebulizers, ER visits, etc so it's a major time-saver for me.

I no longer own a car, so I do a certain amount of walking during the week just to get groceries, run errands, and sometimes even to get to work (most of the time I carpool, but when overtime is offered, I sometimes walk to work to get there early). It really doesn't take me that much more time to walk to the nearby stores than it did to drive and when you calculate how many hours per month of my labor went towards car payments and all the other costs of owning a car (gas, insurance, tag, title, maintenance), I feel I have way more time available now that I don't own a car.

I irrigate my sinuses twice a day. My 21 year old son usually boils my syringe for me and mixes up my solution. So it probably takes me a minute or two to actually irrigate my sinuses. Sometimes I have to boil it and all that. It doesn't take that much hands-on time. I can do other things while it boils. Add maybe five more minutes of my time when I have to prep it myself.

I take a few more supplements in the morning and here lately I take a few supplements to work instead of keeping dayquil in my desk like I used to. All of that amounts to a few seconds here, a few seconds there to pop pills in my mouth and swallow and to stick a few pills in a ziploc bag and toss it in to my lunch.

I take guaifenisen in the morning. Some mornings, I take a single pill. Other mornings, I take a half dose which takes a little more work because half the time I have to cut in half (the other half of the time, I take the leftover half pill from the day before). This is the only drug I am still on.

For chest therapy, I cough hard in the shower. If I have been exposed to something, I take a hotter shower, stay in longer and cough more.

I put carmex in my nose at least twice a day, before leaving for work and before going to sleep and sometimes once more while at work. It also takes very little time, even with washing my hands both before and after.

I wipe my desk down with peroxide, as well as my chair and keyboard, before I sit down. And I get my snacks and drinks all set up. I usually get to work a little early because this prep stuff takes me about 10 minutes.


2) Here lately, about 7 hours, give or take 30 minutes. I used to sleep quite a lot more.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>

I am amazed at how much some people squeeze in! So now I am curious:



1) What is your treatment regimen (how long does it take)? (eg Nebulized Meds, Chest PT, and exercise)



2) How many hours of sleep do you usually get?</end quote></div>

1) I take a plate-ful of supplements in the evening before going to sleep.

I eat a special diet, which takes about the same time as eating a crappy diet and has helped me eliminate nebulizers, ER visits, etc so it's a major time-saver for me.

I no longer own a car, so I do a certain amount of walking during the week just to get groceries, run errands, and sometimes even to get to work (most of the time I carpool, but when overtime is offered, I sometimes walk to work to get there early). It really doesn't take me that much more time to walk to the nearby stores than it did to drive and when you calculate how many hours per month of my labor went towards car payments and all the other costs of owning a car (gas, insurance, tag, title, maintenance), I feel I have way more time available now that I don't own a car.

I irrigate my sinuses twice a day. My 21 year old son usually boils my syringe for me and mixes up my solution. So it probably takes me a minute or two to actually irrigate my sinuses. Sometimes I have to boil it and all that. It doesn't take that much hands-on time. I can do other things while it boils. Add maybe five more minutes of my time when I have to prep it myself.

I take a few more supplements in the morning and here lately I take a few supplements to work instead of keeping dayquil in my desk like I used to. All of that amounts to a few seconds here, a few seconds there to pop pills in my mouth and swallow and to stick a few pills in a ziploc bag and toss it in to my lunch.

I take guaifenisen in the morning. Some mornings, I take a single pill. Other mornings, I take a half dose which takes a little more work because half the time I have to cut in half (the other half of the time, I take the leftover half pill from the day before). This is the only drug I am still on.

For chest therapy, I cough hard in the shower. If I have been exposed to something, I take a hotter shower, stay in longer and cough more.

I put carmex in my nose at least twice a day, before leaving for work and before going to sleep and sometimes once more while at work. It also takes very little time, even with washing my hands both before and after.

I wipe my desk down with peroxide, as well as my chair and keyboard, before I sit down. And I get my snacks and drinks all set up. I usually get to work a little early because this prep stuff takes me about 10 minutes.


2) Here lately, about 7 hours, give or take 30 minutes. I used to sleep quite a lot more.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>

I am amazed at how much some people squeeze in! So now I am curious:



1) What is your treatment regimen (how long does it take)? (eg Nebulized Meds, Chest PT, and exercise)



2) How many hours of sleep do you usually get?</end quote>

1) I take a plate-ful of supplements in the evening before going to sleep.

I eat a special diet, which takes about the same time as eating a crappy diet and has helped me eliminate nebulizers, ER visits, etc so it's a major time-saver for me.

I no longer own a car, so I do a certain amount of walking during the week just to get groceries, run errands, and sometimes even to get to work (most of the time I carpool, but when overtime is offered, I sometimes walk to work to get there early). It really doesn't take me that much more time to walk to the nearby stores than it did to drive and when you calculate how many hours per month of my labor went towards car payments and all the other costs of owning a car (gas, insurance, tag, title, maintenance), I feel I have way more time available now that I don't own a car.

I irrigate my sinuses twice a day. My 21 year old son usually boils my syringe for me and mixes up my solution. So it probably takes me a minute or two to actually irrigate my sinuses. Sometimes I have to boil it and all that. It doesn't take that much hands-on time. I can do other things while it boils. Add maybe five more minutes of my time when I have to prep it myself.

I take a few more supplements in the morning and here lately I take a few supplements to work instead of keeping dayquil in my desk like I used to. All of that amounts to a few seconds here, a few seconds there to pop pills in my mouth and swallow and to stick a few pills in a ziploc bag and toss it in to my lunch.

I take guaifenisen in the morning. Some mornings, I take a single pill. Other mornings, I take a half dose which takes a little more work because half the time I have to cut in half (the other half of the time, I take the leftover half pill from the day before). This is the only drug I am still on.

For chest therapy, I cough hard in the shower. If I have been exposed to something, I take a hotter shower, stay in longer and cough more.

I put carmex in my nose at least twice a day, before leaving for work and before going to sleep and sometimes once more while at work. It also takes very little time, even with washing my hands both before and after.

I wipe my desk down with peroxide, as well as my chair and keyboard, before I sit down. And I get my snacks and drinks all set up. I usually get to work a little early because this prep stuff takes me about 10 minutes.


2) Here lately, about 7 hours, give or take 30 minutes. I used to sleep quite a lot more.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i>
<br />
<br />I am amazed at how much some people squeeze in! So now I am curious:
<br />
<br />
<br />
<br />1) What is your treatment regimen (how long does it take)? (eg Nebulized Meds, Chest PT, and exercise)
<br />
<br />
<br />
<br />2) How many hours of sleep do you usually get?</end quote>
<br />
<br />1) I take a plate-ful of supplements in the evening before going to sleep.
<br />
<br />I eat a special diet, which takes about the same time as eating a crappy diet and has helped me eliminate nebulizers, ER visits, etc so it's a major time-saver for me.
<br />
<br />I no longer own a car, so I do a certain amount of walking during the week just to get groceries, run errands, and sometimes even to get to work (most of the time I carpool, but when overtime is offered, I sometimes walk to work to get there early). It really doesn't take me that much more time to walk to the nearby stores than it did to drive and when you calculate how many hours per month of my labor went towards car payments and all the other costs of owning a car (gas, insurance, tag, title, maintenance), I feel I have way more time available now that I don't own a car.
<br />
<br />I irrigate my sinuses twice a day. My 21 year old son usually boils my syringe for me and mixes up my solution. So it probably takes me a minute or two to actually irrigate my sinuses. Sometimes I have to boil it and all that. It doesn't take that much hands-on time. I can do other things while it boils. Add maybe five more minutes of my time when I have to prep it myself.
<br />
<br />I take a few more supplements in the morning and here lately I take a few supplements to work instead of keeping dayquil in my desk like I used to. All of that amounts to a few seconds here, a few seconds there to pop pills in my mouth and swallow and to stick a few pills in a ziploc bag and toss it in to my lunch.
<br />
<br />I take guaifenisen in the morning. Some mornings, I take a single pill. Other mornings, I take a half dose which takes a little more work because half the time I have to cut in half (the other half of the time, I take the leftover half pill from the day before). This is the only drug I am still on.
<br />
<br />For chest therapy, I cough hard in the shower. If I have been exposed to something, I take a hotter shower, stay in longer and cough more.
<br />
<br />I put carmex in my nose at least twice a day, before leaving for work and before going to sleep and sometimes once more while at work. It also takes very little time, even with washing my hands both before and after.
<br />
<br />I wipe my desk down with peroxide, as well as my chair and keyboard, before I sit down. And I get my snacks and drinks all set up. I usually get to work a little early because this prep stuff takes me about 10 minutes.
<br />
<br />
<br />2) Here lately, about 7 hours, give or take 30 minutes. I used to sleep quite a lot more.

 

[PedsNP2007]

Hi,

My 2 close coworker friends who know of my cf have this running joke for me... They tease me about me doing my drugs in the car... I am "smoking the bong" on the way to work... I have a travel nebulizer. So when I am running off to work (and remember to do my nebs that morning), I do it in the car. Granted, I have to be at work by 5:30 on the picu days and 6:30 on the step-down icu days, so there are not many people out on the road at that point. Doing my neb in the car definitely helps with doing morning treatments. I usually only get 1 treatment in on work days and 2 on non-work days. I do albuterol and then hypertonic saline -- now I am on the tobi regimen since I have been coughing more and my cf dr thinks I would benefit from it.

I also am getting a new vest so I am expecting that soon. I usually do working out everyday (bad at that these last few weeks since I've been at work meetings out of town and just exhausted from work).

Sleep.... gosh, I wish I could have more... the days I work I hardly get good night's rest before hand... and so when I work multiples in a row, I am so tired that I end up sleeping a lot more during the day on my first day off. It sucks but I wish I could go to bed earlier... speaking of which, I should be in bed now! I have to be up at 430 tomorrow ugh! On average, I get 5-6 hours on work days, 8-10 hrs on non-work days (though not consecutively as I wake up a lot).

Jenn
30 year old cf

 

[PedsNP2007]

Hi,

My 2 close coworker friends who know of my cf have this running joke for me... They tease me about me doing my drugs in the car... I am "smoking the bong" on the way to work... I have a travel nebulizer. So when I am running off to work (and remember to do my nebs that morning), I do it in the car. Granted, I have to be at work by 5:30 on the picu days and 6:30 on the step-down icu days, so there are not many people out on the road at that point. Doing my neb in the car definitely helps with doing morning treatments. I usually only get 1 treatment in on work days and 2 on non-work days. I do albuterol and then hypertonic saline -- now I am on the tobi regimen since I have been coughing more and my cf dr thinks I would benefit from it.

I also am getting a new vest so I am expecting that soon. I usually do working out everyday (bad at that these last few weeks since I've been at work meetings out of town and just exhausted from work).

Sleep.... gosh, I wish I could have more... the days I work I hardly get good night's rest before hand... and so when I work multiples in a row, I am so tired that I end up sleeping a lot more during the day on my first day off. It sucks but I wish I could go to bed earlier... speaking of which, I should be in bed now! I have to be up at 430 tomorrow ugh! On average, I get 5-6 hours on work days, 8-10 hrs on non-work days (though not consecutively as I wake up a lot).

Jenn
30 year old cf

 

[PedsNP2007]

Hi,

My 2 close coworker friends who know of my cf have this running joke for me... They tease me about me doing my drugs in the car... I am "smoking the bong" on the way to work... I have a travel nebulizer. So when I am running off to work (and remember to do my nebs that morning), I do it in the car. Granted, I have to be at work by 5:30 on the picu days and 6:30 on the step-down icu days, so there are not many people out on the road at that point. Doing my neb in the car definitely helps with doing morning treatments. I usually only get 1 treatment in on work days and 2 on non-work days. I do albuterol and then hypertonic saline -- now I am on the tobi regimen since I have been coughing more and my cf dr thinks I would benefit from it.

I also am getting a new vest so I am expecting that soon. I usually do working out everyday (bad at that these last few weeks since I've been at work meetings out of town and just exhausted from work).

Sleep.... gosh, I wish I could have more... the days I work I hardly get good night's rest before hand... and so when I work multiples in a row, I am so tired that I end up sleeping a lot more during the day on my first day off. It sucks but I wish I could go to bed earlier... speaking of which, I should be in bed now! I have to be up at 430 tomorrow ugh! On average, I get 5-6 hours on work days, 8-10 hrs on non-work days (though not consecutively as I wake up a lot).

Jenn
30 year old cf

 

[PedsNP2007]

Hi,

My 2 close coworker friends who know of my cf have this running joke for me... They tease me about me doing my drugs in the car... I am "smoking the bong" on the way to work... I have a travel nebulizer. So when I am running off to work (and remember to do my nebs that morning), I do it in the car. Granted, I have to be at work by 5:30 on the picu days and 6:30 on the step-down icu days, so there are not many people out on the road at that point. Doing my neb in the car definitely helps with doing morning treatments. I usually only get 1 treatment in on work days and 2 on non-work days. I do albuterol and then hypertonic saline -- now I am on the tobi regimen since I have been coughing more and my cf dr thinks I would benefit from it.

I also am getting a new vest so I am expecting that soon. I usually do working out everyday (bad at that these last few weeks since I've been at work meetings out of town and just exhausted from work).

Sleep.... gosh, I wish I could have more... the days I work I hardly get good night's rest before hand... and so when I work multiples in a row, I am so tired that I end up sleeping a lot more during the day on my first day off. It sucks but I wish I could go to bed earlier... speaking of which, I should be in bed now! I have to be up at 430 tomorrow ugh! On average, I get 5-6 hours on work days, 8-10 hrs on non-work days (though not consecutively as I wake up a lot).

Jenn
30 year old cf

 

[PedsNP2007]

Hi,
<br />
<br />My 2 close coworker friends who know of my cf have this running joke for me... They tease me about me doing my drugs in the car... I am "smoking the bong" on the way to work... I have a travel nebulizer. So when I am running off to work (and remember to do my nebs that morning), I do it in the car. Granted, I have to be at work by 5:30 on the picu days and 6:30 on the step-down icu days, so there are not many people out on the road at that point. Doing my neb in the car definitely helps with doing morning treatments. I usually only get 1 treatment in on work days and 2 on non-work days. I do albuterol and then hypertonic saline -- now I am on the tobi regimen since I have been coughing more and my cf dr thinks I would benefit from it.
<br />
<br />I also am getting a new vest so I am expecting that soon. I usually do working out everyday (bad at that these last few weeks since I've been at work meetings out of town and just exhausted from work).
<br />
<br />Sleep.... gosh, I wish I could have more... the days I work I hardly get good night's rest before hand... and so when I work multiples in a row, I am so tired that I end up sleeping a lot more during the day on my first day off. It sucks but I wish I could go to bed earlier... speaking of which, I should be in bed now! I have to be up at 430 tomorrow ugh! On average, I get 5-6 hours on work days, 8-10 hrs on non-work days (though not consecutively as I wake up a lot).
<br />
<br />Jenn
<br />30 year old cf