Can we get better or there's no way back?

[nocode]

Hi.
Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?
Thanks.

Vera, 23, Portugal

 

[nocode]

Hi.
Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?
Thanks.

Vera, 23, Portugal

 

[nocode]

Hi.
Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?
Thanks.

Vera, 23, Portugal

 

[JazzysMom]

When the lungs have been damaged, they are permanently damaged. There is no repairing them. Thats why its so important to be responsible with our care. Unlike if we have flareups & our pfts go down....often that is a temporary situation. We are not speaking of actual damage then.

 

[JazzysMom]

When the lungs have been damaged, they are permanently damaged. There is no repairing them. Thats why its so important to be responsible with our care. Unlike if we have flareups & our pfts go down....often that is a temporary situation. We are not speaking of actual damage then.

 

[JazzysMom]

When the lungs have been damaged, they are permanently damaged. There is no repairing them. Thats why its so important to be responsible with our care. Unlike if we have flareups & our pfts go down....often that is a temporary situation. We are not speaking of actual damage then.

 

[Ratatosk]

Our doctor told us early on -- when talking about priorities for CF care.

"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".

 

[Ratatosk]

Our doctor told us early on -- when talking about priorities for CF care.

"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".

 

[Ratatosk]

Our doctor told us early on -- when talking about priorities for CF care.

"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".

 

[Foody]

I understand the point behind the comment above, I just do not like this either or thinking we use in respect to caring for ourselves/children. It is all connected like a huge web - you can not have healthy lungs without healthy digestive system. Sinus health affects the lungs; emotional health and outlook on life affects the immune system; inflammation of one organ system will place others at risk; emotional blocks hold energy needed for proper function of physical systems until they are released; and on it goes. It is about balance in my eyes - or at least balance as a goal.

In terms of prevention, I am not choosing lungs over something else, I choose to be vigilant in all areas of health since it can not be any other way - it is connected whether we acknowledge it or not.

 

[Foody]

I understand the point behind the comment above, I just do not like this either or thinking we use in respect to caring for ourselves/children. It is all connected like a huge web - you can not have healthy lungs without healthy digestive system. Sinus health affects the lungs; emotional health and outlook on life affects the immune system; inflammation of one organ system will place others at risk; emotional blocks hold energy needed for proper function of physical systems until they are released; and on it goes. It is about balance in my eyes - or at least balance as a goal.

In terms of prevention, I am not choosing lungs over something else, I choose to be vigilant in all areas of health since it can not be any other way - it is connected whether we acknowledge it or not.

 

[Foody]

I understand the point behind the comment above, I just do not like this either or thinking we use in respect to caring for ourselves/children. It is all connected like a huge web - you can not have healthy lungs without healthy digestive system. Sinus health affects the lungs; emotional health and outlook on life affects the immune system; inflammation of one organ system will place others at risk; emotional blocks hold energy needed for proper function of physical systems until they are released; and on it goes. It is about balance in my eyes - or at least balance as a goal.

In terms of prevention, I am not choosing lungs over something else, I choose to be vigilant in all areas of health since it can not be any other way - it is connected whether we acknowledge it or not.

 

[Ratatosk]

All aspects of CF care are important -- all tied together -- proper growth, proper nutrition... And it's important to have some balance.

I think the point he was trying to get across is that so many times, because the lungs aren't affected right away is that doctors have people take a "wait and see attitude". He (or primary CF doctor in the City) had us start with CPT from day one, so we hit the ground running. Our local clinic has always given us trouble about doing CPT and nebs because DS's lungs aren't affected yet, so why bother. I've heard other parents, who send their kids to the same clinic say things like "if the lungs are affected, there are measures we can take to "correct" that issue. And it scares the heck out of me.

 

[Ratatosk]

All aspects of CF care are important -- all tied together -- proper growth, proper nutrition... And it's important to have some balance.

I think the point he was trying to get across is that so many times, because the lungs aren't affected right away is that doctors have people take a "wait and see attitude". He (or primary CF doctor in the City) had us start with CPT from day one, so we hit the ground running. Our local clinic has always given us trouble about doing CPT and nebs because DS's lungs aren't affected yet, so why bother. I've heard other parents, who send their kids to the same clinic say things like "if the lungs are affected, there are measures we can take to "correct" that issue. And it scares the heck out of me.

 

[Ratatosk]

All aspects of CF care are important -- all tied together -- proper growth, proper nutrition... And it's important to have some balance.

I think the point he was trying to get across is that so many times, because the lungs aren't affected right away is that doctors have people take a "wait and see attitude". He (or primary CF doctor in the City) had us start with CPT from day one, so we hit the ground running. Our local clinic has always given us trouble about doing CPT and nebs because DS's lungs aren't affected yet, so why bother. I've heard other parents, who send their kids to the same clinic say things like "if the lungs are affected, there are measures we can take to "correct" that issue. And it scares the heck out of me.

 

[ladybug]

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

Our doctor told us early on -- when talking about priorities for CF care.



"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".</end quote></div>

Hi, Liza... This must be your clinic in the cities, right? Becasue I remember the local clinic being EXTREMELY agressive with weight while I was growing up as they took the approach that healthy weight means healthy lungs and healthy lungs mean healthy weight. So, many of my appts. were focused on gaining weight. Although they also always preached about the absolute importance of lung health and doing treatments... even as a young young child, so I wonder why their focus is shifted???

 

[ladybug]

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

Our doctor told us early on -- when talking about priorities for CF care.



"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".</end quote></div>

Hi, Liza... This must be your clinic in the cities, right? Becasue I remember the local clinic being EXTREMELY agressive with weight while I was growing up as they took the approach that healthy weight means healthy lungs and healthy lungs mean healthy weight. So, many of my appts. were focused on gaining weight. Although they also always preached about the absolute importance of lung health and doing treatments... even as a young young child, so I wonder why their focus is shifted???

 

[ladybug]

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

Our doctor told us early on -- when talking about priorities for CF care.



"Some people will tell you that nutrition is the most important aspect of CF care. But on a scale of 1 to 10, I'd put nutrition down toward the bottom and proper lung care at a 10. You can regain weight, you can't regain lung tissue once it's gone. It's gone".</end quote></div>

Hi, Liza... This must be your clinic in the cities, right? Becasue I remember the local clinic being EXTREMELY agressive with weight while I was growing up as they took the approach that healthy weight means healthy lungs and healthy lungs mean healthy weight. So, many of my appts. were focused on gaining weight. Although they also always preached about the absolute importance of lung health and doing treatments... even as a young young child, so I wonder why their focus is shifted???

 

[ladybug]

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

Hi.

Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?

Thanks.



Vera, 23, Portugal</end quote></div>

I don't think my lungs have "reversed" the permanant damage, but with exercise I certainly FEEL better and have regained 6-7% of my FEV1 over the past 4-5 years since doing cardio 3-4 times a week. So, maybe I'm not "undoing" damage, but my lungs must be getting stronger in some form. Maybe it makes me cough stuff out more easily so the damage can't set in as quickly. Maybe it makes the lung capacity I have stronger and more efficient. I don't know. But, I think exercise is one thing we can do to either regain or at least slow the progression this disease does on our lungs.

Obviously, its inevitable that you will loose lung function and eventually the disease will take over, but my thought is that you can slow it (and sometimes even regain for a time) by exercise, doing treatments and med. religiously, and listening to your body (destressing your life, etc.)....

 

[ladybug]

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

Hi.

Here's something i have never remembered to ask my doctors: can our lungs get better? Don't be afraid to answer negativelly because my guess is "no", according to what's logical. I know we go through phases when we feel bad but then we feel good again, that's a fact. But the organs themselves, can they actually get better with the meds or what's damaged is damaged?

Thanks.



Vera, 23, Portugal</end quote></div>

I don't think my lungs have "reversed" the permanant damage, but with exercise I certainly FEEL better and have regained 6-7% of my FEV1 over the past 4-5 years since doing cardio 3-4 times a week. So, maybe I'm not "undoing" damage, but my lungs must be getting stronger in some form. Maybe it makes me cough stuff out more easily so the damage can't set in as quickly. Maybe it makes the lung capacity I have stronger and more efficient. I don't know. But, I think exercise is one thing we can do to either regain or at least slow the progression this disease does on our lungs.

Obviously, its inevitable that you will loose lung function and eventually the disease will take over, but my thought is that you can slow it (and sometimes even regain for a time) by exercise, doing treatments and med. religiously, and listening to your body (destressing your life, etc.)....