Doing Nebs day and night

[mom2lillian]

I have changed back my work time from 7-8 and now I have to get up at 4:45am to get to work by 8am. The months I am 'on' TOBI are much harder than the months I am off.

Normally I wake and do my vest and xopenex and TOBI if applicable in the morning then I go to gym 1/2-45min because I feel it is essential now that I see the difference it has made. Then on the way to work I use a portable to do the pulmozyme. If I am not on TOBI then I do pulmozyme in morning.

I used to see 'where I could fit it in' and I got sick alot because I missed alot of treatments. Now I look at it more like Amy, have to do it without question. The results for me have been that for the first time ever I was not sick/in hospital in feb/mar.

I know it sucks but something has to go, sleep or long work hours. Perhaps if you were doing treatments and felt better you would be able to stand up on the train ride?? That owudl save you 15 min. Sometimes if I am pressed for time I will do a few puffs of albuterol instead of xopenex treatment (I never used to use xopenex but tried using every day in am and it really helps with clearance).

 

[Ratatosk]

What about a pari trek or other battery operated nebulizer. Trek is about the size of a packet of cigarettes. You're talking bronchiodialtors, right instead of tobi or pulmozyme?

Otherwise, are you sitting at a desk at work and nebbing. Or do you get coffee/tea breaks -- can you run off to restroom lounge and neb for 10-15 minutes.

We get up at 6 a.m. and neb & beat DS while he's still sleeping. Then right away when we get home from preschool/work (5:15) and then right before bedtime. What's your morning routine --- DH drives me nuts 'cuz every morning he gets a cup of coffee and the paper and goes off to the "reading room" for 15-20 minutes.

 

[Ratatosk]

What about a pari trek or other battery operated nebulizer. Trek is about the size of a packet of cigarettes. You're talking bronchiodialtors, right instead of tobi or pulmozyme?

Otherwise, are you sitting at a desk at work and nebbing. Or do you get coffee/tea breaks -- can you run off to restroom lounge and neb for 10-15 minutes.

We get up at 6 a.m. and neb & beat DS while he's still sleeping. Then right away when we get home from preschool/work (5:15) and then right before bedtime. What's your morning routine --- DH drives me nuts 'cuz every morning he gets a cup of coffee and the paper and goes off to the "reading room" for 15-20 minutes.

 

[Ratatosk]

What about a pari trek or other battery operated nebulizer. Trek is about the size of a packet of cigarettes. You're talking bronchiodialtors, right instead of tobi or pulmozyme?

Otherwise, are you sitting at a desk at work and nebbing. Or do you get coffee/tea breaks -- can you run off to restroom lounge and neb for 10-15 minutes.

We get up at 6 a.m. and neb & beat DS while he's still sleeping. Then right away when we get home from preschool/work (5:15) and then right before bedtime. What's your morning routine --- DH drives me nuts 'cuz every morning he gets a cup of coffee and the paper and goes off to the "reading room" for 15-20 minutes.

 

[kybert]

wow, those are such long hours. i personally would never be able to do a 40 hour week and fit regular treatments in, unless i were allowed to do it in work time. i could never give up my sleep to do a treatment either. i hope you find a way to fit everything in!

 

[kybert]

wow, those are such long hours. i personally would never be able to do a 40 hour week and fit regular treatments in, unless i were allowed to do it in work time. i could never give up my sleep to do a treatment either. i hope you find a way to fit everything in!

 

[kybert]

wow, those are such long hours. i personally would never be able to do a 40 hour week and fit regular treatments in, unless i were allowed to do it in work time. i could never give up my sleep to do a treatment either. i hope you find a way to fit everything in!

 

[nicolaj]

I was going to write a post about nebs the other day.
I was wondering how many nebs all you guys did in a day? Even though i dont work, i still find it sometimes difficult to fit them all in my day.
In total i do 4 nebs, sometimes 5. i do 2Meropenem nebs, 1Hypertonic and my Pulmozyme. What do you do if you want to go shopping with friends one day or you visit family?

nicola xx

 

[nicolaj]

I was going to write a post about nebs the other day.
I was wondering how many nebs all you guys did in a day? Even though i dont work, i still find it sometimes difficult to fit them all in my day.
In total i do 4 nebs, sometimes 5. i do 2Meropenem nebs, 1Hypertonic and my Pulmozyme. What do you do if you want to go shopping with friends one day or you visit family?

nicola xx

 

[nicolaj]

I was going to write a post about nebs the other day.
I was wondering how many nebs all you guys did in a day? Even though i dont work, i still find it sometimes difficult to fit them all in my day.
In total i do 4 nebs, sometimes 5. i do 2Meropenem nebs, 1Hypertonic and my Pulmozyme. What do you do if you want to go shopping with friends one day or you visit family?

nicola xx

 

[Ratatosk]

DS is on Duoneb (Albuterol & Atrovent) 3 times a day (4 if he's got a cough or cold), tobi twice a day and pulmozyme once a day. When he's on Tobi, if we don't get started right away when we get home from school/work the evening gets short and we're rushing around.

We start at 6 a.m. with the duoneb and cpt, then finish with tobi. Repeat at 5:15-5:30 and at 10 pm we do duoneb & pulmozyme -- those we do the vest.

 

[Ratatosk]

DS is on Duoneb (Albuterol & Atrovent) 3 times a day (4 if he's got a cough or cold), tobi twice a day and pulmozyme once a day. When he's on Tobi, if we don't get started right away when we get home from school/work the evening gets short and we're rushing around.

We start at 6 a.m. with the duoneb and cpt, then finish with tobi. Repeat at 5:15-5:30 and at 10 pm we do duoneb & pulmozyme -- those we do the vest.

 

[Ratatosk]

DS is on Duoneb (Albuterol & Atrovent) 3 times a day (4 if he's got a cough or cold), tobi twice a day and pulmozyme once a day. When he's on Tobi, if we don't get started right away when we get home from school/work the evening gets short and we're rushing around.

We start at 6 a.m. with the duoneb and cpt, then finish with tobi. Repeat at 5:15-5:30 and at 10 pm we do duoneb & pulmozyme -- those we do the vest.

 

[princessjdc]

What I do is I get up an hour and a half early to start cause thats the time it takes. Then at night about 9 or 10 I do my second treatment or evening treatment you could say. I ony have to do my treatments 2 times a day which helps. I work from 8 to 5 Tues - Fri and about a few hours on Saturday night.

 

[princessjdc]

What I do is I get up an hour and a half early to start cause thats the time it takes. Then at night about 9 or 10 I do my second treatment or evening treatment you could say. I ony have to do my treatments 2 times a day which helps. I work from 8 to 5 Tues - Fri and about a few hours on Saturday night.

 

[princessjdc]

What I do is I get up an hour and a half early to start cause thats the time it takes. Then at night about 9 or 10 I do my second treatment or evening treatment you could say. I ony have to do my treatments 2 times a day which helps. I work from 8 to 5 Tues - Fri and about a few hours on Saturday night.

 

[cdale613]

Hi Fred,

Fred - you clearly highlight some real difficulties with your work/commute schedule that are difficult to deal with, making it easy to brush aside generic answers about needing to improve your time management. However, you do need to take a close look at your priorities and how you're living your life in order to figure out how you can make it all fit.

For example, you commute for roughly four hours every day. I work a 40+ hour work week, and commute for about an hour a day. As a result, I have 3 more hours to jam in my meds, chest PT, and exercise each day. I will never have a 4 hour commute. I wouldn't take that job, or I'd move. Obviously, these are difficult choices, and I'm not pretending to know anything about your experience, but since you're asking for advice about how to make time for your meds, there's my two cents.

Given your situation, I would recommend trying to do your nebs at work... again, don't know if this is reasonable or not given your employer. In the US, you would be able to get this accomodation... I don't know what Japan is like.

As far as travel goes, I like to think I'm pretty portable, and have never felt limited... I've been to Europe, the Carribean, all over the US, and never had a problem. The Pari Proneb Ultra II is quite compact, and can fit in any carryon bag I travel with. I dislike the pari trek... its not strong enough to effectively deliver meds, so I don't use or recommend it (I did try it). I have not yet been able to get my hands on an e-flow, but that's the next project.


Chris

26 m w/ CF

 

[cdale613]

Hi Fred,

Fred - you clearly highlight some real difficulties with your work/commute schedule that are difficult to deal with, making it easy to brush aside generic answers about needing to improve your time management. However, you do need to take a close look at your priorities and how you're living your life in order to figure out how you can make it all fit.

For example, you commute for roughly four hours every day. I work a 40+ hour work week, and commute for about an hour a day. As a result, I have 3 more hours to jam in my meds, chest PT, and exercise each day. I will never have a 4 hour commute. I wouldn't take that job, or I'd move. Obviously, these are difficult choices, and I'm not pretending to know anything about your experience, but since you're asking for advice about how to make time for your meds, there's my two cents.

Given your situation, I would recommend trying to do your nebs at work... again, don't know if this is reasonable or not given your employer. In the US, you would be able to get this accomodation... I don't know what Japan is like.

As far as travel goes, I like to think I'm pretty portable, and have never felt limited... I've been to Europe, the Carribean, all over the US, and never had a problem. The Pari Proneb Ultra II is quite compact, and can fit in any carryon bag I travel with. I dislike the pari trek... its not strong enough to effectively deliver meds, so I don't use or recommend it (I did try it). I have not yet been able to get my hands on an e-flow, but that's the next project.


Chris

26 m w/ CF

 

[cdale613]

Hi Fred,

Fred - you clearly highlight some real difficulties with your work/commute schedule that are difficult to deal with, making it easy to brush aside generic answers about needing to improve your time management. However, you do need to take a close look at your priorities and how you're living your life in order to figure out how you can make it all fit.

For example, you commute for roughly four hours every day. I work a 40+ hour work week, and commute for about an hour a day. As a result, I have 3 more hours to jam in my meds, chest PT, and exercise each day. I will never have a 4 hour commute. I wouldn't take that job, or I'd move. Obviously, these are difficult choices, and I'm not pretending to know anything about your experience, but since you're asking for advice about how to make time for your meds, there's my two cents.

Given your situation, I would recommend trying to do your nebs at work... again, don't know if this is reasonable or not given your employer. In the US, you would be able to get this accomodation... I don't know what Japan is like.

As far as travel goes, I like to think I'm pretty portable, and have never felt limited... I've been to Europe, the Carribean, all over the US, and never had a problem. The Pari Proneb Ultra II is quite compact, and can fit in any carryon bag I travel with. I dislike the pari trek... its not strong enough to effectively deliver meds, so I don't use or recommend it (I did try it). I have not yet been able to get my hands on an e-flow, but that's the next project.


Chris

26 m w/ CF

 

[JazzysMom]

I vote for just hauling your a$$ back to the US where you at least have the law on your side!!!!!!!!!!!!!!!