Mild and Rare Cases...where are you?

J

JazzysMom

New member
I understand your feeling of being an "outcast" of sorts. I wasnt dx until I was 7 & although I had terrible digestion issues which led to my dx, I was ok lung wise up until then. Even after dx when I went into the hospital, had hemoptysis, coughed a lot etc. I still felt like I was "different then other CFers".

When I initially joined the forum I was in despair. My life was turned upside down. My health was in the toilet & I thought "maybe" someone here would understand. WHICH THEY DID, but once my health stabilized I went back to feeling like I was "different" then all of "them".

Then my health turned for the worse again, but I never completely bounced back. I returned to this forum & never left. There are CFers here of every spectrum of CF. There are even people here that dont have an official CF dx, but can relate to what we deal with do to their physical struggles.

I am sure at times there is a bit of envy (I will admit its reared is head with me on occaision) when looking at those who havent progressed etc. Yet I am also very happy for them. I think what gets to me is when they take it for granted YET I have been there & done that. It reminds me of when a parent tells you "you will understand when you have your own kids some day" or something to that affect.

OK I have rambled enough.....
 
J

JazzysMom

New member
I understand your feeling of being an "outcast" of sorts. I wasnt dx until I was 7 & although I had terrible digestion issues which led to my dx, I was ok lung wise up until then. Even after dx when I went into the hospital, had hemoptysis, coughed a lot etc. I still felt like I was "different then other CFers".

When I initially joined the forum I was in despair. My life was turned upside down. My health was in the toilet & I thought "maybe" someone here would understand. WHICH THEY DID, but once my health stabilized I went back to feeling like I was "different" then all of "them".

Then my health turned for the worse again, but I never completely bounced back. I returned to this forum & never left. There are CFers here of every spectrum of CF. There are even people here that dont have an official CF dx, but can relate to what we deal with do to their physical struggles.

I am sure at times there is a bit of envy (I will admit its reared is head with me on occaision) when looking at those who havent progressed etc. Yet I am also very happy for them. I think what gets to me is when they take it for granted YET I have been there & done that. It reminds me of when a parent tells you "you will understand when you have your own kids some day" or something to that affect.

OK I have rambled enough.....
 
J

JazzysMom

New member
I understand your feeling of being an "outcast" of sorts. I wasnt dx until I was 7 & although I had terrible digestion issues which led to my dx, I was ok lung wise up until then. Even after dx when I went into the hospital, had hemoptysis, coughed a lot etc. I still felt like I was "different then other CFers".

When I initially joined the forum I was in despair. My life was turned upside down. My health was in the toilet & I thought "maybe" someone here would understand. WHICH THEY DID, but once my health stabilized I went back to feeling like I was "different" then all of "them".

Then my health turned for the worse again, but I never completely bounced back. I returned to this forum & never left. There are CFers here of every spectrum of CF. There are even people here that dont have an official CF dx, but can relate to what we deal with do to their physical struggles.

I am sure at times there is a bit of envy (I will admit its reared is head with me on occaision) when looking at those who havent progressed etc. Yet I am also very happy for them. I think what gets to me is when they take it for granted YET I have been there & done that. It reminds me of when a parent tells you "you will understand when you have your own kids some day" or something to that affect.

OK I have rambled enough.....
 
J

JazzysMom

New member
I understand your feeling of being an "outcast" of sorts. I wasnt dx until I was 7 & although I had terrible digestion issues which led to my dx, I was ok lung wise up until then. Even after dx when I went into the hospital, had hemoptysis, coughed a lot etc. I still felt like I was "different then other CFers".

When I initially joined the forum I was in despair. My life was turned upside down. My health was in the toilet & I thought "maybe" someone here would understand. WHICH THEY DID, but once my health stabilized I went back to feeling like I was "different" then all of "them".

Then my health turned for the worse again, but I never completely bounced back. I returned to this forum & never left. There are CFers here of every spectrum of CF. There are even people here that dont have an official CF dx, but can relate to what we deal with do to their physical struggles.

I am sure at times there is a bit of envy (I will admit its reared is head with me on occaision) when looking at those who havent progressed etc. Yet I am also very happy for them. I think what gets to me is when they take it for granted YET I have been there & done that. It reminds me of when a parent tells you "you will understand when you have your own kids some day" or something to that affect.

OK I have rambled enough.....
 
N

NoExcuses

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

And my running has produced more out of my lungs than any vest might, which is why I keep it up.

</end quote></div>

I'm wondering if you've read any of the literature on this. Using High Frequency Chest Compression vs. exercise alone. You said you keep yourself well educated so I'd love to hear about any informatoin you've come across on this.

In addition, I'm curious if you've measured your sputum production, objectively, while doing the Vest vs. when you exercise. If so, what have your results been?
 
N

NoExcuses

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

And my running has produced more out of my lungs than any vest might, which is why I keep it up.

</end quote></div>

I'm wondering if you've read any of the literature on this. Using High Frequency Chest Compression vs. exercise alone. You said you keep yourself well educated so I'd love to hear about any informatoin you've come across on this.

In addition, I'm curious if you've measured your sputum production, objectively, while doing the Vest vs. when you exercise. If so, what have your results been?
 
N

NoExcuses

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

And my running has produced more out of my lungs than any vest might, which is why I keep it up.

</end quote></div>

I'm wondering if you've read any of the literature on this. Using High Frequency Chest Compression vs. exercise alone. You said you keep yourself well educated so I'd love to hear about any informatoin you've come across on this.

In addition, I'm curious if you've measured your sputum production, objectively, while doing the Vest vs. when you exercise. If so, what have your results been?
 
N

NoExcuses

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

And my running has produced more out of my lungs than any vest might, which is why I keep it up.

</end quote></div>

I'm wondering if you've read any of the literature on this. Using High Frequency Chest Compression vs. exercise alone. You said you keep yourself well educated so I'd love to hear about any informatoin you've come across on this.

In addition, I'm curious if you've measured your sputum production, objectively, while doing the Vest vs. when you exercise. If so, what have your results been?
 
N

NoExcuses

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

And my running has produced more out of my lungs than any vest might, which is why I keep it up.

</end quote>

I'm wondering if you've read any of the literature on this. Using High Frequency Chest Compression vs. exercise alone. You said you keep yourself well educated so I'd love to hear about any informatoin you've come across on this.

In addition, I'm curious if you've measured your sputum production, objectively, while doing the Vest vs. when you exercise. If so, what have your results been?
 
N

NoExcuses

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

And my running has produced more out of my lungs than any vest might, which is why I keep it up.

</end quote>

I'm wondering if you've read any of the literature on this. Using High Frequency Chest Compression vs. exercise alone. You said you keep yourself well educated so I'd love to hear about any informatoin you've come across on this.

In addition, I'm curious if you've measured your sputum production, objectively, while doing the Vest vs. when you exercise. If so, what have your results been?
 
L

LouLou

New member
Lindsay, Don't be surprised you haven't heard from a lot of the cfers with your similar presentation. They are here but I believe generally stop by more periodic than daily like the majority of the people that have responded. Maybe they don't get as addicted because they don't relate quite as well, who knows? But knowledge is power and even if you aren't experiencing this cf thing or that cf thing it's good to know about it just in case it rears it's head. Two members with current similiar cf to yours that don't post often that you can search past posts about are:

chipper28
JohnnaMarie (she also swears by Miralax once a day. Her pfts are 120 I believe)

The thing you might experience here is that you think you're at your best but you'll surely find something that will get under your skin about how you are caring for yourself and you'll likely want to be even better. For example, there are people here with higher pfts than you probably. Also, many that manage their nasal problems with rinses and such avoiding sinus surgeries.

Welcome :) I hope you stick around.
 
L

LouLou

New member
Lindsay, Don't be surprised you haven't heard from a lot of the cfers with your similar presentation. They are here but I believe generally stop by more periodic than daily like the majority of the people that have responded. Maybe they don't get as addicted because they don't relate quite as well, who knows? But knowledge is power and even if you aren't experiencing this cf thing or that cf thing it's good to know about it just in case it rears it's head. Two members with current similiar cf to yours that don't post often that you can search past posts about are:

chipper28
JohnnaMarie (she also swears by Miralax once a day. Her pfts are 120 I believe)

The thing you might experience here is that you think you're at your best but you'll surely find something that will get under your skin about how you are caring for yourself and you'll likely want to be even better. For example, there are people here with higher pfts than you probably. Also, many that manage their nasal problems with rinses and such avoiding sinus surgeries.

Welcome :) I hope you stick around.
 
L

LouLou

New member
Lindsay, Don't be surprised you haven't heard from a lot of the cfers with your similar presentation. They are here but I believe generally stop by more periodic than daily like the majority of the people that have responded. Maybe they don't get as addicted because they don't relate quite as well, who knows? But knowledge is power and even if you aren't experiencing this cf thing or that cf thing it's good to know about it just in case it rears it's head. Two members with current similiar cf to yours that don't post often that you can search past posts about are:

chipper28
JohnnaMarie (she also swears by Miralax once a day. Her pfts are 120 I believe)

The thing you might experience here is that you think you're at your best but you'll surely find something that will get under your skin about how you are caring for yourself and you'll likely want to be even better. For example, there are people here with higher pfts than you probably. Also, many that manage their nasal problems with rinses and such avoiding sinus surgeries.

Welcome :) I hope you stick around.
 
L

LouLou

New member
Lindsay, Don't be surprised you haven't heard from a lot of the cfers with your similar presentation. They are here but I believe generally stop by more periodic than daily like the majority of the people that have responded. Maybe they don't get as addicted because they don't relate quite as well, who knows? But knowledge is power and even if you aren't experiencing this cf thing or that cf thing it's good to know about it just in case it rears it's head. Two members with current similiar cf to yours that don't post often that you can search past posts about are:

chipper28
JohnnaMarie (she also swears by Miralax once a day. Her pfts are 120 I believe)

The thing you might experience here is that you think you're at your best but you'll surely find something that will get under your skin about how you are caring for yourself and you'll likely want to be even better. For example, there are people here with higher pfts than you probably. Also, many that manage their nasal problems with rinses and such avoiding sinus surgeries.

Welcome :) I hope you stick around.
 
L

LouLou

New member
Lindsay, Don't be surprised you haven't heard from a lot of the cfers with your similar presentation. They are here but I believe generally stop by more periodic than daily like the majority of the people that have responded. Maybe they don't get as addicted because they don't relate quite as well, who knows? But knowledge is power and even if you aren't experiencing this cf thing or that cf thing it's good to know about it just in case it rears it's head. Two members with current similiar cf to yours that don't post often that you can search past posts about are:

chipper28
JohnnaMarie (she also swears by Miralax once a day. Her pfts are 120 I believe)

The thing you might experience here is that you think you're at your best but you'll surely find something that will get under your skin about how you are caring for yourself and you'll likely want to be even better. For example, there are people here with higher pfts than you probably. Also, many that manage their nasal problems with rinses and such avoiding sinus surgeries.

Welcome :) I hope you stick around.
 
L

LouLou

New member
Lindsay, Don't be surprised you haven't heard from a lot of the cfers with your similar presentation. They are here but I believe generally stop by more periodic than daily like the majority of the people that have responded. Maybe they don't get as addicted because they don't relate quite as well, who knows? But knowledge is power and even if you aren't experiencing this cf thing or that cf thing it's good to know about it just in case it rears it's head. Two members with current similiar cf to yours that don't post often that you can search past posts about are:

chipper28
JohnnaMarie (she also swears by Miralax once a day. Her pfts are 120 I believe)

The thing you might experience here is that you think you're at your best but you'll surely find something that will get under your skin about how you are caring for yourself and you'll likely want to be even better. For example, there are people here with higher pfts than you probably. Also, many that manage their nasal problems with rinses and such avoiding sinus surgeries.

Welcome :) I hope you stick around.
 
L

lmattaway

New member
In all honesty, Amy (I hope I'm remembering your name right) I've not read anything specifically on it but I never seem to cough anything up during chest pt. Running (and sometimes the hypertonic) is the only thing that gets me to produce anything (and even that's not frequent). So yes, that statement was totally based on experience alone and I don't believe it can be applied to everyone. Though I'd be curious about any articles as well.

Okay, after a little searching I did find this, though as far as medicine goes it's fairly outdated but still has a valid result. <a target=_blank class=ftalternatingbarlinklarge href="http://adc.bmj.com/cgi/content/abstract/57/8/587">http://adc.bmj.com/cgi/content/abstract/57/8/587</a>
 
L

lmattaway

New member
In all honesty, Amy (I hope I'm remembering your name right) I've not read anything specifically on it but I never seem to cough anything up during chest pt. Running (and sometimes the hypertonic) is the only thing that gets me to produce anything (and even that's not frequent). So yes, that statement was totally based on experience alone and I don't believe it can be applied to everyone. Though I'd be curious about any articles as well.

Okay, after a little searching I did find this, though as far as medicine goes it's fairly outdated but still has a valid result. <a target=_blank class=ftalternatingbarlinklarge href="http://adc.bmj.com/cgi/content/abstract/57/8/587">http://adc.bmj.com/cgi/content/abstract/57/8/587</a>
 
L

lmattaway

New member
In all honesty, Amy (I hope I'm remembering your name right) I've not read anything specifically on it but I never seem to cough anything up during chest pt. Running (and sometimes the hypertonic) is the only thing that gets me to produce anything (and even that's not frequent). So yes, that statement was totally based on experience alone and I don't believe it can be applied to everyone. Though I'd be curious about any articles as well.

Okay, after a little searching I did find this, though as far as medicine goes it's fairly outdated but still has a valid result. <a target=_blank class=ftalternatingbarlinklarge href="http://adc.bmj.com/cgi/content/abstract/57/8/587">http://adc.bmj.com/cgi/content/abstract/57/8/587</a>
 
L

lmattaway

New member
In all honesty, Amy (I hope I'm remembering your name right) I've not read anything specifically on it but I never seem to cough anything up during chest pt. Running (and sometimes the hypertonic) is the only thing that gets me to produce anything (and even that's not frequent). So yes, that statement was totally based on experience alone and I don't believe it can be applied to everyone. Though I'd be curious about any articles as well.

Okay, after a little searching I did find this, though as far as medicine goes it's fairly outdated but still has a valid result. <a target=_blank class=ftalternatingbarlinklarge href="http://adc.bmj.com/cgi/content/abstract/57/8/587">http://adc.bmj.com/cgi/content/abstract/57/8/587</a>
 
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