How improtant is prevention in doing chest therapy

M

mom2lillian

New member
ok I will be 100% honest here in the hope it will help someone.

I have 'mild' cf so I have never gotten the preaching from my doctors to get my #'s up. Even when I am sick they will see 70's and say oh you are doing great, forgetting who they are talking to and that is really sick for me. I always thought since I was 'mild' and my docs never really pushed me to do better what I was doing was 'good enough' since I was pretty healthy (I actually assumed I was one healtiest around until I came to this site). I got sick about 4x a year though nothing too terrible and did IV's about 1x a year and figured that was as good as it woudl get.

I thought since I ddint get much up during my physio it wasnt necessary-boy was I wrong! It makes a huge difference in keeping my airways open and keeping anything from getting deposited in there. Now that I routinely do it I do get stuff up and I can tell when I skip. If her son is truly not mkaing any sputum right now thta is terrific but they should do physioanyway as it will take a while before they realize he is making it and the stuff is sitting in his lungs drying out and making his lungs hospitable for bacteria and he starts getting ill -- then they will realized and start treatment. Even if he only gets out one samll cough of stuff a week that is somethign tht is not sitting in his lungs collecting bacteria and dryign out.

NOW since beginning of 07 I do my treatments every day 2x a day and rarely miss. This is the first year I have not been hospitilized in feb/mar and on IV's. I have not been on IV's since OCtober and my peak flow is consistently showing better than I have ever seen I have been back to work for 4 months and not missed a day. Before I woudl do peak flow and if it came up real low and I was tired and feelign crummy I woudl take a hiatus from work and do treatments and rest for a day (~4-5x a year) now I dont need this because I never get so far behind that I need a whole day of treatments and this period of feb-May is usually bad for me.

My mindset might have been like this mothers is now (it is stupid to screw yourself but downright detestable to do this to another person let alone your child). The extra time I am taking during the day while it sucks to get into the routine far outweighs the two weeks of my life that IV's seem to suck out. So my vote woudl be for getting into the routine, doing the work isnt hard it is setting aside the time to make it a habit and stick to it that is hard. And if the kid is lucky enough to make it to be a teen before he really needs to buckly down what do you think the chances of getting him to start a routine then are when it was too much trouble for the mother to do???
 
M

mom2lillian

New member
ok I will be 100% honest here in the hope it will help someone.

I have 'mild' cf so I have never gotten the preaching from my doctors to get my #'s up. Even when I am sick they will see 70's and say oh you are doing great, forgetting who they are talking to and that is really sick for me. I always thought since I was 'mild' and my docs never really pushed me to do better what I was doing was 'good enough' since I was pretty healthy (I actually assumed I was one healtiest around until I came to this site). I got sick about 4x a year though nothing too terrible and did IV's about 1x a year and figured that was as good as it woudl get.

I thought since I ddint get much up during my physio it wasnt necessary-boy was I wrong! It makes a huge difference in keeping my airways open and keeping anything from getting deposited in there. Now that I routinely do it I do get stuff up and I can tell when I skip. If her son is truly not mkaing any sputum right now thta is terrific but they should do physioanyway as it will take a while before they realize he is making it and the stuff is sitting in his lungs drying out and making his lungs hospitable for bacteria and he starts getting ill -- then they will realized and start treatment. Even if he only gets out one samll cough of stuff a week that is somethign tht is not sitting in his lungs collecting bacteria and dryign out.

NOW since beginning of 07 I do my treatments every day 2x a day and rarely miss. This is the first year I have not been hospitilized in feb/mar and on IV's. I have not been on IV's since OCtober and my peak flow is consistently showing better than I have ever seen I have been back to work for 4 months and not missed a day. Before I woudl do peak flow and if it came up real low and I was tired and feelign crummy I woudl take a hiatus from work and do treatments and rest for a day (~4-5x a year) now I dont need this because I never get so far behind that I need a whole day of treatments and this period of feb-May is usually bad for me.

My mindset might have been like this mothers is now (it is stupid to screw yourself but downright detestable to do this to another person let alone your child). The extra time I am taking during the day while it sucks to get into the routine far outweighs the two weeks of my life that IV's seem to suck out. So my vote woudl be for getting into the routine, doing the work isnt hard it is setting aside the time to make it a habit and stick to it that is hard. And if the kid is lucky enough to make it to be a teen before he really needs to buckly down what do you think the chances of getting him to start a routine then are when it was too much trouble for the mother to do???
 
M

mom2lillian

New member
ok I will be 100% honest here in the hope it will help someone.

I have 'mild' cf so I have never gotten the preaching from my doctors to get my #'s up. Even when I am sick they will see 70's and say oh you are doing great, forgetting who they are talking to and that is really sick for me. I always thought since I was 'mild' and my docs never really pushed me to do better what I was doing was 'good enough' since I was pretty healthy (I actually assumed I was one healtiest around until I came to this site). I got sick about 4x a year though nothing too terrible and did IV's about 1x a year and figured that was as good as it woudl get.

I thought since I ddint get much up during my physio it wasnt necessary-boy was I wrong! It makes a huge difference in keeping my airways open and keeping anything from getting deposited in there. Now that I routinely do it I do get stuff up and I can tell when I skip. If her son is truly not mkaing any sputum right now thta is terrific but they should do physioanyway as it will take a while before they realize he is making it and the stuff is sitting in his lungs drying out and making his lungs hospitable for bacteria and he starts getting ill -- then they will realized and start treatment. Even if he only gets out one samll cough of stuff a week that is somethign tht is not sitting in his lungs collecting bacteria and dryign out.

NOW since beginning of 07 I do my treatments every day 2x a day and rarely miss. This is the first year I have not been hospitilized in feb/mar and on IV's. I have not been on IV's since OCtober and my peak flow is consistently showing better than I have ever seen I have been back to work for 4 months and not missed a day. Before I woudl do peak flow and if it came up real low and I was tired and feelign crummy I woudl take a hiatus from work and do treatments and rest for a day (~4-5x a year) now I dont need this because I never get so far behind that I need a whole day of treatments and this period of feb-May is usually bad for me.

My mindset might have been like this mothers is now (it is stupid to screw yourself but downright detestable to do this to another person let alone your child). The extra time I am taking during the day while it sucks to get into the routine far outweighs the two weeks of my life that IV's seem to suck out. So my vote woudl be for getting into the routine, doing the work isnt hard it is setting aside the time to make it a habit and stick to it that is hard. And if the kid is lucky enough to make it to be a teen before he really needs to buckly down what do you think the chances of getting him to start a routine then are when it was too much trouble for the mother to do???
 
M

Mommafirst

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

Hi,



I just thought I'd add what we do. I have a 19 month old and we do CPT twice a day and 3-4 if sick. She has been doing great and I do believe it is the preventative care. My mom watches Kate when I am at work, and she will do the CPT for me as well. We are very lucky! When I took Kate to clinic in March, the respitory therapists came in just to see how things were going. I was shocked how surprised they were that we do this twice a day at least two min. per spot. I didn't think that was negotiable, but apparently a lot of parents don't do it (at least religiously). I'm just bummed Kate is on the small side and may have to wait another year for the vest. I cannot wait for that!



Zoe mom to Kate 19 months</end quote></div>


Zoe -- my daughter is VERY small (off the charts for her age) and is 16 months. We just got the vest. The smallest one has a 19 inch chest circumference. My daughter is not quite there, but we just up the "pressure" setting to account for the difference and its FABULOUS. We were able to push for it because my dd was hospitalized in March. If you want any more information, you can PM me!!
 
M

Mommafirst

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

Hi,



I just thought I'd add what we do. I have a 19 month old and we do CPT twice a day and 3-4 if sick. She has been doing great and I do believe it is the preventative care. My mom watches Kate when I am at work, and she will do the CPT for me as well. We are very lucky! When I took Kate to clinic in March, the respitory therapists came in just to see how things were going. I was shocked how surprised they were that we do this twice a day at least two min. per spot. I didn't think that was negotiable, but apparently a lot of parents don't do it (at least religiously). I'm just bummed Kate is on the small side and may have to wait another year for the vest. I cannot wait for that!



Zoe mom to Kate 19 months</end quote></div>


Zoe -- my daughter is VERY small (off the charts for her age) and is 16 months. We just got the vest. The smallest one has a 19 inch chest circumference. My daughter is not quite there, but we just up the "pressure" setting to account for the difference and its FABULOUS. We were able to push for it because my dd was hospitalized in March. If you want any more information, you can PM me!!
 
M

Mommafirst

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

Hi,



I just thought I'd add what we do. I have a 19 month old and we do CPT twice a day and 3-4 if sick. She has been doing great and I do believe it is the preventative care. My mom watches Kate when I am at work, and she will do the CPT for me as well. We are very lucky! When I took Kate to clinic in March, the respitory therapists came in just to see how things were going. I was shocked how surprised they were that we do this twice a day at least two min. per spot. I didn't think that was negotiable, but apparently a lot of parents don't do it (at least religiously). I'm just bummed Kate is on the small side and may have to wait another year for the vest. I cannot wait for that!



Zoe mom to Kate 19 months</end quote></div>


Zoe -- my daughter is VERY small (off the charts for her age) and is 16 months. We just got the vest. The smallest one has a 19 inch chest circumference. My daughter is not quite there, but we just up the "pressure" setting to account for the difference and its FABULOUS. We were able to push for it because my dd was hospitalized in March. If you want any more information, you can PM me!!
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

ok I will be 100% honest here in the hope it will help someone.



I have 'mild' cf so I have never gotten the preaching from my doctors to get my #'s up. Even when I am sick they will see 70's and say oh you are doing great, forgetting who they are talking to and that is really sick for me. I always thought since I was 'mild' and my docs never really pushed me to do better what I was doing was 'good enough' since I was pretty healthy (I actually assumed I was one healtiest around until I came to this site). I got sick about 4x a year though nothing too terrible and did IV's about 1x a year and figured that was as good as it woudl get.



I thought since I ddint get much up during my physio it wasnt necessary-boy was I wrong! It makes a huge difference in keeping my airways open and keeping anything from getting deposited in there. Now that I routinely do it I do get stuff up and I can tell when I skip. If her son is truly not mkaing any sputum right now thta is terrific but they should do physioanyway as it will take a while before they realize he is making it and the stuff is sitting in his lungs drying out and making his lungs hospitable for bacteria and he starts getting ill -- then they will realized and start treatment. Even if he only gets out one samll cough of stuff a week that is somethign tht is not sitting in his lungs collecting bacteria and dryign out.



NOW since beginning of 07 I do my treatments every day 2x a day and rarely miss. This is the first year I have not been hospitilized in feb/mar and on IV's. I have not been on IV's since OCtober and my peak flow is consistently showing better than I have ever seen I have been back to work for 4 months and not missed a day. Before I woudl do peak flow and if it came up real low and I was tired and feelign crummy I woudl take a hiatus from work and do treatments and rest for a day (~4-5x a year) now I dont need this because I never get so far behind that I need a whole day of treatments and this period of feb-May is usually bad for me.



My mindset might have been like this mothers is now (it is stupid to screw yourself but downright detestable to do this to another person let alone your child). The extra time I am taking during the day while it sucks to get into the routine far outweighs the two weeks of my life that IV's seem to suck out. So my vote woudl be for getting into the routine, doing the work isnt hard it is setting aside the time to make it a habit and stick to it that is hard. And if the kid is lucky enough to make it to be a teen before he really needs to buckly down what do you think the chances of getting him to start a routine then are when it was too much trouble for the mother to do???</end quote></div>


Nicole you bring up such good points. So many have the perception that CF will stay the same for the rest of their lives.

And quite frankly, it's the "mild" ones who never did meds who seem to take a dive more quickly than the rest because they simply aren't used to do meds. They just truck along and BAM. When they get sick, it hits hard.

I just wish physicians would do a better job educating their patients & families about the progressive nature of this disease. It seems that so many have the view that this disease stays the same over time. "Oh, we got lucky! At age 4, he's mild" . Most of us were mild at age 4.

Thanks again for posting your story, Nicole. I'm sure you helped so many with your honesty.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

ok I will be 100% honest here in the hope it will help someone.



I have 'mild' cf so I have never gotten the preaching from my doctors to get my #'s up. Even when I am sick they will see 70's and say oh you are doing great, forgetting who they are talking to and that is really sick for me. I always thought since I was 'mild' and my docs never really pushed me to do better what I was doing was 'good enough' since I was pretty healthy (I actually assumed I was one healtiest around until I came to this site). I got sick about 4x a year though nothing too terrible and did IV's about 1x a year and figured that was as good as it woudl get.



I thought since I ddint get much up during my physio it wasnt necessary-boy was I wrong! It makes a huge difference in keeping my airways open and keeping anything from getting deposited in there. Now that I routinely do it I do get stuff up and I can tell when I skip. If her son is truly not mkaing any sputum right now thta is terrific but they should do physioanyway as it will take a while before they realize he is making it and the stuff is sitting in his lungs drying out and making his lungs hospitable for bacteria and he starts getting ill -- then they will realized and start treatment. Even if he only gets out one samll cough of stuff a week that is somethign tht is not sitting in his lungs collecting bacteria and dryign out.



NOW since beginning of 07 I do my treatments every day 2x a day and rarely miss. This is the first year I have not been hospitilized in feb/mar and on IV's. I have not been on IV's since OCtober and my peak flow is consistently showing better than I have ever seen I have been back to work for 4 months and not missed a day. Before I woudl do peak flow and if it came up real low and I was tired and feelign crummy I woudl take a hiatus from work and do treatments and rest for a day (~4-5x a year) now I dont need this because I never get so far behind that I need a whole day of treatments and this period of feb-May is usually bad for me.



My mindset might have been like this mothers is now (it is stupid to screw yourself but downright detestable to do this to another person let alone your child). The extra time I am taking during the day while it sucks to get into the routine far outweighs the two weeks of my life that IV's seem to suck out. So my vote woudl be for getting into the routine, doing the work isnt hard it is setting aside the time to make it a habit and stick to it that is hard. And if the kid is lucky enough to make it to be a teen before he really needs to buckly down what do you think the chances of getting him to start a routine then are when it was too much trouble for the mother to do???</end quote></div>


Nicole you bring up such good points. So many have the perception that CF will stay the same for the rest of their lives.

And quite frankly, it's the "mild" ones who never did meds who seem to take a dive more quickly than the rest because they simply aren't used to do meds. They just truck along and BAM. When they get sick, it hits hard.

I just wish physicians would do a better job educating their patients & families about the progressive nature of this disease. It seems that so many have the view that this disease stays the same over time. "Oh, we got lucky! At age 4, he's mild" . Most of us were mild at age 4.

Thanks again for posting your story, Nicole. I'm sure you helped so many with your honesty.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>

ok I will be 100% honest here in the hope it will help someone.



I have 'mild' cf so I have never gotten the preaching from my doctors to get my #'s up. Even when I am sick they will see 70's and say oh you are doing great, forgetting who they are talking to and that is really sick for me. I always thought since I was 'mild' and my docs never really pushed me to do better what I was doing was 'good enough' since I was pretty healthy (I actually assumed I was one healtiest around until I came to this site). I got sick about 4x a year though nothing too terrible and did IV's about 1x a year and figured that was as good as it woudl get.



I thought since I ddint get much up during my physio it wasnt necessary-boy was I wrong! It makes a huge difference in keeping my airways open and keeping anything from getting deposited in there. Now that I routinely do it I do get stuff up and I can tell when I skip. If her son is truly not mkaing any sputum right now thta is terrific but they should do physioanyway as it will take a while before they realize he is making it and the stuff is sitting in his lungs drying out and making his lungs hospitable for bacteria and he starts getting ill -- then they will realized and start treatment. Even if he only gets out one samll cough of stuff a week that is somethign tht is not sitting in his lungs collecting bacteria and dryign out.



NOW since beginning of 07 I do my treatments every day 2x a day and rarely miss. This is the first year I have not been hospitilized in feb/mar and on IV's. I have not been on IV's since OCtober and my peak flow is consistently showing better than I have ever seen I have been back to work for 4 months and not missed a day. Before I woudl do peak flow and if it came up real low and I was tired and feelign crummy I woudl take a hiatus from work and do treatments and rest for a day (~4-5x a year) now I dont need this because I never get so far behind that I need a whole day of treatments and this period of feb-May is usually bad for me.



My mindset might have been like this mothers is now (it is stupid to screw yourself but downright detestable to do this to another person let alone your child). The extra time I am taking during the day while it sucks to get into the routine far outweighs the two weeks of my life that IV's seem to suck out. So my vote woudl be for getting into the routine, doing the work isnt hard it is setting aside the time to make it a habit and stick to it that is hard. And if the kid is lucky enough to make it to be a teen before he really needs to buckly down what do you think the chances of getting him to start a routine then are when it was too much trouble for the mother to do???</end quote></div>


Nicole you bring up such good points. So many have the perception that CF will stay the same for the rest of their lives.

And quite frankly, it's the "mild" ones who never did meds who seem to take a dive more quickly than the rest because they simply aren't used to do meds. They just truck along and BAM. When they get sick, it hits hard.

I just wish physicians would do a better job educating their patients & families about the progressive nature of this disease. It seems that so many have the view that this disease stays the same over time. "Oh, we got lucky! At age 4, he's mild" . Most of us were mild at age 4.

Thanks again for posting your story, Nicole. I'm sure you helped so many with your honesty.
 
M

mneville

Guest
Aidan started CPT at 8 days old totally asymptomatic for lung issues. At age 1 and 1/2 he started the VEST twice a day for an hour total. He does it everyday- doesn't miss unless he has a stomach flu or something and cannot tolerate it. Aidan is a Double Delta,newborn diagnosis yet he tops the weight charts and has had no lung issues.

We are not naive about the progressive nature of this disease therefore we do all of these things to slow and stop the progression. Warwick has told us by doing these things, we are essentially making his lungs normal by hydrating the mucous. Therfore he should not be having lung issues, we will continue to do this everyday and believe he will stay healthy. It has worked so far. Prevention is key!

Megan
 
M

mneville

Guest
Aidan started CPT at 8 days old totally asymptomatic for lung issues. At age 1 and 1/2 he started the VEST twice a day for an hour total. He does it everyday- doesn't miss unless he has a stomach flu or something and cannot tolerate it. Aidan is a Double Delta,newborn diagnosis yet he tops the weight charts and has had no lung issues.

We are not naive about the progressive nature of this disease therefore we do all of these things to slow and stop the progression. Warwick has told us by doing these things, we are essentially making his lungs normal by hydrating the mucous. Therfore he should not be having lung issues, we will continue to do this everyday and believe he will stay healthy. It has worked so far. Prevention is key!

Megan
 
M

mneville

Guest
Aidan started CPT at 8 days old totally asymptomatic for lung issues. At age 1 and 1/2 he started the VEST twice a day for an hour total. He does it everyday- doesn't miss unless he has a stomach flu or something and cannot tolerate it. Aidan is a Double Delta,newborn diagnosis yet he tops the weight charts and has had no lung issues.

We are not naive about the progressive nature of this disease therefore we do all of these things to slow and stop the progression. Warwick has told us by doing these things, we are essentially making his lungs normal by hydrating the mucous. Therfore he should not be having lung issues, we will continue to do this everyday and believe he will stay healthy. It has worked so far. Prevention is key!

Megan
 
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