Disappointing news from the doc.

ladybug · Oct 20, 2006

"Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it."

Jennifer:

I had this happen to me also and my doc put me on HS every OTHER day now. She said that if and when you are used to it it may actually irritate your lungs and make it less effective than doing it when there is gunk in there to cough out. Just something they did for me. Now, on the every other day I cough again with it nearly every time.

ladybug · Oct 20, 2006

"Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it."

Jennifer:

I had this happen to me also and my doc put me on HS every OTHER day now. She said that if and when you are used to it it may actually irritate your lungs and make it less effective than doing it when there is gunk in there to cough out. Just something they did for me. Now, on the every other day I cough again with it nearly every time.

ladybug · Oct 20, 2006

"Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it."

Jennifer:

I had this happen to me also and my doc put me on HS every OTHER day now. She said that if and when you are used to it it may actually irritate your lungs and make it less effective than doing it when there is gunk in there to cough out. Just something they did for me. Now, on the every other day I cough again with it nearly every time.

lightNlife · Oct 21, 2006

<div class="FTQUOTE"><begin quote>

How is your weight? Many docs think weight is directly related to lung health... </end quote></div>

Well, sort of. When you say lung health, do you mean lung function or lung capacity?

I asked my doc about the weight thing awhile back since I noticed that my readout had a VERY inaccurate weight for me, and I thought I would skew the results. Weight has more bearing on lung function for a person who is overweight. In the CF community, persons who are not pancreatic insufficient may had lower lung function because they are carrying around extra weight which presses on the diaphragm and makes it more difficult to breath deeply.

For patients with pancreatic insufficiency, gaining weight and improving BMI is almost always a good thing because it means that the body is better able to fight off infection. Avoiding infection is the best way to sustain overall lung health, but simply putting on weight alone is not going to improve FEV1 to any remarkable degree.

Also, not to be a little raincloud, but as far as increasing lung function and improving the FEV1, don't expect anything dramatic. Exercise can help decrease the rate of loss of lung function, but the nature of CF is that lung function WILL inevitably decline. An individual may have a sizable range of their own highs and lows between periods of health and exacerbation, but there is currently no way to truly reverse and restore overall lung function.

lightNlife · Oct 21, 2006

<div class="FTQUOTE"><begin quote>

How is your weight? Many docs think weight is directly related to lung health... </end quote></div>

Well, sort of. When you say lung health, do you mean lung function or lung capacity?

I asked my doc about the weight thing awhile back since I noticed that my readout had a VERY inaccurate weight for me, and I thought I would skew the results. Weight has more bearing on lung function for a person who is overweight. In the CF community, persons who are not pancreatic insufficient may had lower lung function because they are carrying around extra weight which presses on the diaphragm and makes it more difficult to breath deeply.

For patients with pancreatic insufficiency, gaining weight and improving BMI is almost always a good thing because it means that the body is better able to fight off infection. Avoiding infection is the best way to sustain overall lung health, but simply putting on weight alone is not going to improve FEV1 to any remarkable degree.

Also, not to be a little raincloud, but as far as increasing lung function and improving the FEV1, don't expect anything dramatic. Exercise can help decrease the rate of loss of lung function, but the nature of CF is that lung function WILL inevitably decline. An individual may have a sizable range of their own highs and lows between periods of health and exacerbation, but there is currently no way to truly reverse and restore overall lung function.

lightNlife · Oct 21, 2006

<div class="FTQUOTE"><begin quote>

How is your weight? Many docs think weight is directly related to lung health... </end quote></div>

Well, sort of. When you say lung health, do you mean lung function or lung capacity?

I asked my doc about the weight thing awhile back since I noticed that my readout had a VERY inaccurate weight for me, and I thought I would skew the results. Weight has more bearing on lung function for a person who is overweight. In the CF community, persons who are not pancreatic insufficient may had lower lung function because they are carrying around extra weight which presses on the diaphragm and makes it more difficult to breath deeply.

For patients with pancreatic insufficiency, gaining weight and improving BMI is almost always a good thing because it means that the body is better able to fight off infection. Avoiding infection is the best way to sustain overall lung health, but simply putting on weight alone is not going to improve FEV1 to any remarkable degree.

Also, not to be a little raincloud, but as far as increasing lung function and improving the FEV1, don't expect anything dramatic. Exercise can help decrease the rate of loss of lung function, but the nature of CF is that lung function WILL inevitably decline. An individual may have a sizable range of their own highs and lows between periods of health and exacerbation, but there is currently no way to truly reverse and restore overall lung function.

princessjdc · Oct 21, 2006

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

"Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it."

Jennifer:

I had this happen to me also and my doc put me on HS every OTHER day now. She said that if and when you are used to it it may actually irritate your lungs and make it less effective than doing it when there is gunk in there to cough out. Just something they did for me. Now, on the every other day I cough again with it nearly every time.</end quote></div>

I do try and huff every now then and once in while I will get a real cough from it, but when I huff or cough on my own, its always a dry cough. Thanks for the info.

princessjdc · Oct 21, 2006

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

"Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it."

Jennifer:

I had this happen to me also and my doc put me on HS every OTHER day now. She said that if and when you are used to it it may actually irritate your lungs and make it less effective than doing it when there is gunk in there to cough out. Just something they did for me. Now, on the every other day I cough again with it nearly every time.</end quote></div>

I do try and huff every now then and once in while I will get a real cough from it, but when I huff or cough on my own, its always a dry cough. Thanks for the info.

princessjdc · Oct 21, 2006

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

"Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it."

Jennifer:

I had this happen to me also and my doc put me on HS every OTHER day now. She said that if and when you are used to it it may actually irritate your lungs and make it less effective than doing it when there is gunk in there to cough out. Just something they did for me. Now, on the every other day I cough again with it nearly every time.</end quote></div>

I do try and huff every now then and once in while I will get a real cough from it, but when I huff or cough on my own, its always a dry cough. Thanks for the info.

Diane · Oct 21, 2006

I remember years ago, when i thought the "All inportant" # the Dr. was looking at , was the fvc. Then one day my nurse pointed out to me that the number my Dr. was going by, was my fev1.
I was less than thrilled and very surprised because all this time, i was thinking the highest # was the one we were going by. Since my cf had been quite mild and i had no real lung problems till i was much older ( late 20's early 30's) i hardly knew anything about what the pft's meant. In fact i didnt do a pft till i was about 21 or 22, and to be honest, i had no idea why they had me blow out birthday candles on a computer and thought it was some sort of odd game........lol.
I dont recall doing it again till a few years later when i went to a different cf clinic. But i am guessing they figured i'd been doing this all my life and knew what it was all about, but i really had no idea what the #'s meant till my nurse told me one day a few years back. Its good to know whats what with the #'s but then again, Sometimes i think i was better off not knowing, because now , probably like everyone else , i am fixated on #'s.

Diane · Oct 21, 2006

I remember years ago, when i thought the "All inportant" # the Dr. was looking at , was the fvc. Then one day my nurse pointed out to me that the number my Dr. was going by, was my fev1.
I was less than thrilled and very surprised because all this time, i was thinking the highest # was the one we were going by. Since my cf had been quite mild and i had no real lung problems till i was much older ( late 20's early 30's) i hardly knew anything about what the pft's meant. In fact i didnt do a pft till i was about 21 or 22, and to be honest, i had no idea why they had me blow out birthday candles on a computer and thought it was some sort of odd game........lol.
I dont recall doing it again till a few years later when i went to a different cf clinic. But i am guessing they figured i'd been doing this all my life and knew what it was all about, but i really had no idea what the #'s meant till my nurse told me one day a few years back. Its good to know whats what with the #'s but then again, Sometimes i think i was better off not knowing, because now , probably like everyone else , i am fixated on #'s.

Diane · Oct 21, 2006

I remember years ago, when i thought the "All inportant" # the Dr. was looking at , was the fvc. Then one day my nurse pointed out to me that the number my Dr. was going by, was my fev1.
I was less than thrilled and very surprised because all this time, i was thinking the highest # was the one we were going by. Since my cf had been quite mild and i had no real lung problems till i was much older ( late 20's early 30's) i hardly knew anything about what the pft's meant. In fact i didnt do a pft till i was about 21 or 22, and to be honest, i had no idea why they had me blow out birthday candles on a computer and thought it was some sort of odd game........lol.
I dont recall doing it again till a few years later when i went to a different cf clinic. But i am guessing they figured i'd been doing this all my life and knew what it was all about, but i really had no idea what the #'s meant till my nurse told me one day a few years back. Its good to know whats what with the #'s but then again, Sometimes i think i was better off not knowing, because now , probably like everyone else , i am fixated on #'s.

princessjdc · Oct 22, 2006

In the past I use to not want to know what my #s were because I was afraid they would be low, until my doc told me last year what they were he was telling me how long I could live and that day Idecided I shouldnt be afraid of what my #s are as long as I do something to get and keep them up.

princessjdc · Oct 22, 2006

In the past I use to not want to know what my #s were because I was afraid they would be low, until my doc told me last year what they were he was telling me how long I could live and that day Idecided I shouldnt be afraid of what my #s are as long as I do something to get and keep them up.

princessjdc · Oct 22, 2006

In the past I use to not want to know what my #s were because I was afraid they would be low, until my doc told me last year what they were he was telling me how long I could live and that day Idecided I shouldnt be afraid of what my #s are as long as I do something to get and keep them up.

ladybug · Oct 22, 2006

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

<div class="FTQUOTE"><begin quote>

How is your weight? Many docs think weight is directly related to lung health... </end quote></div>

Well, sort of. When you say lung health, do you mean lung function or lung capacity?
<i>
I mean lung health overall.... As you explain below, my docs have said that with pancreatic insufficiency, I MUST keep my weight up and then my lungs won't have to work as hard and therefore remain healthier (in general) compared to if I was underweight and my body was sucking all the energy out of me just to maintian my weight... the lungs kinda get "left behind" when your body needs to work to find energy cause you don't have any reserve of weight. It also boosts your immune system (thus your lung health) cause you have nutrients and your body can better fight things off. Also, my docs were infamous for saying that when you have a bit of reserve on your bones, when you get sick and have to get a clean out, you can stand to loose a few pounds and its isn't determental, while if you have no reserve, you can become quite underweight and thus your recovery time is longer and your illness is exacerbated cause your body is trying to fight for energy to fight the infection... lotsa extra workload on the body. Make more sense? <img src=""></i>

I asked my doc about the weight thing awhile back since I noticed that my readout had a VERY inaccurate weight for me, and I thought I would skew the results. Weight has more bearing on lung function for a person who is overweight. In the CF community, persons who are not pancreatic insufficient may had lower lung function because they are carrying around extra weight which presses on the diaphragm and makes it more difficult to breath deeply.

For patients with pancreatic insufficiency, gaining weight and improving BMI is almost always a good thing because it means that the body is better able to fight off infection. Avoiding infection is the best way to sustain overall lung health, but simply putting on weight alone is not going to improve FEV1 to any remarkable degree.

<i>Well, "remarkable" is relative really. I consider the fact that when I went from 94 lbs. to 115 lbs. and my lung function FEV1 AND FVC went up 5% and STAYED there (without use of any antibiotics) pretty remarkable.</i>

Also, not to be a little raincloud, but as far as increasing lung function and improving the FEV1, don't expect anything dramatic. Exercise can help decrease the rate of loss of lung function, but the nature of CF is that lung function WILL inevitably decline. An individual may have a sizable range of their own highs and lows between periods of health and exacerbation, but there is currently no way to truly reverse and restore overall lung function.</end quote></div>

<i>Honestly, I used to believe this as well, and maybe I'm a strange case, but honestly, since I started excercising regularily and gained 10-15 lbs., my FEV1 AND FVC have both been raised. I do not consider the raise "within my normal range", cause I had been around my baseline number for 3-4 years. Even with IVs, I could NOT surpass the numbers I was at for more than a week or two. Now, with regular cardio and eating more calories and taking less stress in my life, I have maintained a brand new baseline 5% higher than I ever could be before during that 3-4 year period. I do agree that perhaps I am just expanding my lung volume or something and not actually "undoing" damage and scar tissue from the CF, however, a constant new, higher baseline did come about by something I did. I am certain of that. So, you do have SOME control over your numbers in most cases IMHO. My docs consitently tell me that excercise is comparable to treatments in many cases and doing both together can bring about amazing results. It can also make it so when and if you do have a transplant, even if you were not able to get your FEV1 or FVC up much, your lungs ARE stronger and can better accept transplant. (Another thing they have told me and Dr. Warwick's collegues have told a friend of mine this prior to his transplant and he did great and still is.... They had him working out for hours a day just prior to his transplant.) So, for these reasons I DO feel you can take an active role in "re-gaining" lung capacity and lung volume. That's jmo though. </i>

ladybug · Oct 22, 2006

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

<div class="FTQUOTE"><begin quote>

How is your weight? Many docs think weight is directly related to lung health... </end quote></div>

Well, sort of. When you say lung health, do you mean lung function or lung capacity?
<i>
I mean lung health overall.... As you explain below, my docs have said that with pancreatic insufficiency, I MUST keep my weight up and then my lungs won't have to work as hard and therefore remain healthier (in general) compared to if I was underweight and my body was sucking all the energy out of me just to maintian my weight... the lungs kinda get "left behind" when your body needs to work to find energy cause you don't have any reserve of weight. It also boosts your immune system (thus your lung health) cause you have nutrients and your body can better fight things off. Also, my docs were infamous for saying that when you have a bit of reserve on your bones, when you get sick and have to get a clean out, you can stand to loose a few pounds and its isn't determental, while if you have no reserve, you can become quite underweight and thus your recovery time is longer and your illness is exacerbated cause your body is trying to fight for energy to fight the infection... lotsa extra workload on the body. Make more sense? <img src=""></i>

I asked my doc about the weight thing awhile back since I noticed that my readout had a VERY inaccurate weight for me, and I thought I would skew the results. Weight has more bearing on lung function for a person who is overweight. In the CF community, persons who are not pancreatic insufficient may had lower lung function because they are carrying around extra weight which presses on the diaphragm and makes it more difficult to breath deeply.

For patients with pancreatic insufficiency, gaining weight and improving BMI is almost always a good thing because it means that the body is better able to fight off infection. Avoiding infection is the best way to sustain overall lung health, but simply putting on weight alone is not going to improve FEV1 to any remarkable degree.

<i>Well, "remarkable" is relative really. I consider the fact that when I went from 94 lbs. to 115 lbs. and my lung function FEV1 AND FVC went up 5% and STAYED there (without use of any antibiotics) pretty remarkable.</i>

Also, not to be a little raincloud, but as far as increasing lung function and improving the FEV1, don't expect anything dramatic. Exercise can help decrease the rate of loss of lung function, but the nature of CF is that lung function WILL inevitably decline. An individual may have a sizable range of their own highs and lows between periods of health and exacerbation, but there is currently no way to truly reverse and restore overall lung function.</end quote></div>

<i>Honestly, I used to believe this as well, and maybe I'm a strange case, but honestly, since I started excercising regularily and gained 10-15 lbs., my FEV1 AND FVC have both been raised. I do not consider the raise "within my normal range", cause I had been around my baseline number for 3-4 years. Even with IVs, I could NOT surpass the numbers I was at for more than a week or two. Now, with regular cardio and eating more calories and taking less stress in my life, I have maintained a brand new baseline 5% higher than I ever could be before during that 3-4 year period. I do agree that perhaps I am just expanding my lung volume or something and not actually "undoing" damage and scar tissue from the CF, however, a constant new, higher baseline did come about by something I did. I am certain of that. So, you do have SOME control over your numbers in most cases IMHO. My docs consitently tell me that excercise is comparable to treatments in many cases and doing both together can bring about amazing results. It can also make it so when and if you do have a transplant, even if you were not able to get your FEV1 or FVC up much, your lungs ARE stronger and can better accept transplant. (Another thing they have told me and Dr. Warwick's collegues have told a friend of mine this prior to his transplant and he did great and still is.... They had him working out for hours a day just prior to his transplant.) So, for these reasons I DO feel you can take an active role in "re-gaining" lung capacity and lung volume. That's jmo though. </i>

ladybug · Oct 22, 2006

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

<div class="FTQUOTE"><begin quote>

How is your weight? Many docs think weight is directly related to lung health... </end quote></div>

Well, sort of. When you say lung health, do you mean lung function or lung capacity?
<i>
I mean lung health overall.... As you explain below, my docs have said that with pancreatic insufficiency, I MUST keep my weight up and then my lungs won't have to work as hard and therefore remain healthier (in general) compared to if I was underweight and my body was sucking all the energy out of me just to maintian my weight... the lungs kinda get "left behind" when your body needs to work to find energy cause you don't have any reserve of weight. It also boosts your immune system (thus your lung health) cause you have nutrients and your body can better fight things off. Also, my docs were infamous for saying that when you have a bit of reserve on your bones, when you get sick and have to get a clean out, you can stand to loose a few pounds and its isn't determental, while if you have no reserve, you can become quite underweight and thus your recovery time is longer and your illness is exacerbated cause your body is trying to fight for energy to fight the infection... lotsa extra workload on the body. Make more sense? <img src=""></i>

I asked my doc about the weight thing awhile back since I noticed that my readout had a VERY inaccurate weight for me, and I thought I would skew the results. Weight has more bearing on lung function for a person who is overweight. In the CF community, persons who are not pancreatic insufficient may had lower lung function because they are carrying around extra weight which presses on the diaphragm and makes it more difficult to breath deeply.

For patients with pancreatic insufficiency, gaining weight and improving BMI is almost always a good thing because it means that the body is better able to fight off infection. Avoiding infection is the best way to sustain overall lung health, but simply putting on weight alone is not going to improve FEV1 to any remarkable degree.

<i>Well, "remarkable" is relative really. I consider the fact that when I went from 94 lbs. to 115 lbs. and my lung function FEV1 AND FVC went up 5% and STAYED there (without use of any antibiotics) pretty remarkable.</i>

Also, not to be a little raincloud, but as far as increasing lung function and improving the FEV1, don't expect anything dramatic. Exercise can help decrease the rate of loss of lung function, but the nature of CF is that lung function WILL inevitably decline. An individual may have a sizable range of their own highs and lows between periods of health and exacerbation, but there is currently no way to truly reverse and restore overall lung function.</end quote></div>

<i>Honestly, I used to believe this as well, and maybe I'm a strange case, but honestly, since I started excercising regularily and gained 10-15 lbs., my FEV1 AND FVC have both been raised. I do not consider the raise "within my normal range", cause I had been around my baseline number for 3-4 years. Even with IVs, I could NOT surpass the numbers I was at for more than a week or two. Now, with regular cardio and eating more calories and taking less stress in my life, I have maintained a brand new baseline 5% higher than I ever could be before during that 3-4 year period. I do agree that perhaps I am just expanding my lung volume or something and not actually "undoing" damage and scar tissue from the CF, however, a constant new, higher baseline did come about by something I did. I am certain of that. So, you do have SOME control over your numbers in most cases IMHO. My docs consitently tell me that excercise is comparable to treatments in many cases and doing both together can bring about amazing results. It can also make it so when and if you do have a transplant, even if you were not able to get your FEV1 or FVC up much, your lungs ARE stronger and can better accept transplant. (Another thing they have told me and Dr. Warwick's collegues have told a friend of mine this prior to his transplant and he did great and still is.... They had him working out for hours a day just prior to his transplant.) So, for these reasons I DO feel you can take an active role in "re-gaining" lung capacity and lung volume. That's jmo though. </i>

ladybug · Oct 22, 2006

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

I do try and huff every now then and once in while I will get a real cough from it, but when I huff or cough on my own, its always a dry cough. Thanks for the info.</end quote></div>

NP. I agree. Its weird how the more you do it the less effective it seems. Kinda a bummer. Yet, as my doc said, may be a good thing cause you may have "coughed out" what needed and could come loose and that's a very good thing.... right? Either way, I still see results (though still not as dramatic as when I first started) when I do it every other day, and that has not lessened at all. So, that's good. <img src="">

ladybug · Oct 22, 2006

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

I do try and huff every now then and once in while I will get a real cough from it, but when I huff or cough on my own, its always a dry cough. Thanks for the info.</end quote></div>

NP. I agree. Its weird how the more you do it the less effective it seems. Kinda a bummer. Yet, as my doc said, may be a good thing cause you may have "coughed out" what needed and could come loose and that's a very good thing.... right? Either way, I still see results (though still not as dramatic as when I first started) when I do it every other day, and that has not lessened at all. So, that's good. <img src="">

Disappointing news from the doc.

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