Lung damage

[gunelle]

Hi, I was wondering how much our lungs are damaged, if they are scarred. I suppose it depends on each case of CF, mild or more severe. I will ask my doctor as my next appointment, but does anyone have thoughts/info on this. Have you been told your lungs are scarred? I have broncoestasia, and that in itself is a damage...

Any thoughts?

Thanks.

 

[gunelle]

Hi, I was wondering how much our lungs are damaged, if they are scarred. I suppose it depends on each case of CF, mild or more severe. I will ask my doctor as my next appointment, but does anyone have thoughts/info on this. Have you been told your lungs are scarred? I have broncoestasia, and that in itself is a damage...

Any thoughts?

Thanks.

 

[gunelle]

Hi, I was wondering how much our lungs are damaged, if they are scarred. I suppose it depends on each case of CF, mild or more severe. I will ask my doctor as my next appointment, but does anyone have thoughts/info on this. Have you been told your lungs are scarred? I have broncoestasia, and that in itself is a damage...
<br />
<br />Any thoughts?
<br />
<br />Thanks.

 

[Ratatosk]

Recently I got an email from a drug company -- pulmozyme maybe explaining how CF affects the lungs with graphics explaning the progression. I can't seem to find it at the moment though...

 

[Ratatosk]

Recently I got an email from a drug company -- pulmozyme maybe explaining how CF affects the lungs with graphics explaning the progression. I can't seem to find it at the moment though...

 

[Ratatosk]

Recently I got an email from a drug company -- pulmozyme maybe explaining how CF affects the lungs with graphics explaning the progression. I can't seem to find it at the moment though...

 

[entropy]

At 32, your lungs are almost most certainly scarred. How much scarring is variable and subjective to the individual's genetic makeup and the choices they made in their life. Someone could have a very mild case but smoke, not to their treatments, etc and have extensive scarring at a young age. Others have done treatments consistently for their entire life and have never smoked or used drugs long term and are, for the most part, perfectly healthy.

 

[entropy]

At 32, your lungs are almost most certainly scarred. How much scarring is variable and subjective to the individual's genetic makeup and the choices they made in their life. Someone could have a very mild case but smoke, not to their treatments, etc and have extensive scarring at a young age. Others have done treatments consistently for their entire life and have never smoked or used drugs long term and are, for the most part, perfectly healthy.

 

[entropy]

At 32, your lungs are almost most certainly scarred. How much scarring is variable and subjective to the individual's genetic makeup and the choices they made in their life. Someone could have a very mild case but smoke, not to their treatments, etc and have extensive scarring at a young age. Others have done treatments consistently for their entire life and have never smoked or used drugs long term and are, for the most part, perfectly healthy.

 

[mag6125]

I have so much scarring that the last two times I was in the ER (because of chest pain and short of breath) they actually thought I had pneumonia, but it turned out it was just an exacerbation and thats how bad my chest x-ray looked.

 

[mag6125]

I have so much scarring that the last two times I was in the ER (because of chest pain and short of breath) they actually thought I had pneumonia, but it turned out it was just an exacerbation and thats how bad my chest x-ray looked.

 

[mag6125]

I have so much scarring that the last two times I was in the ER (because of chest pain and short of breath) they actually thought I had pneumonia, but it turned out it was just an exacerbation and thats how bad my chest x-ray looked.

 

[Havoc]

Mine is still decent looking, especially since I will be turning 30 this year (I need to update my signature). I have some mild bronchiectasis, otherwise clear. I always ask to see my films after we shoot them, that way if I'm ever in an ER or somewhere other than clinic, I can compare what I'm seeing to how my last film looked.

 

[Havoc]

Mine is still decent looking, especially since I will be turning 30 this year (I need to update my signature). I have some mild bronchiectasis, otherwise clear. I always ask to see my films after we shoot them, that way if I'm ever in an ER or somewhere other than clinic, I can compare what I'm seeing to how my last film looked.

 

[Havoc]

Mine is still decent looking, especially since I will be turning 30 this year (I need to update my signature). I have some mild bronchiectasis, otherwise clear. I always ask to see my films after we shoot them, that way if I'm ever in an ER or somewhere other than clinic, I can compare what I'm seeing to how my last film looked.

 

[CountryGirl]

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

Someone could have a very mild case but smoke, not to their treatments, etc and have extensive scarring at a young age. Others have done treatments consistently for their entire life and have never smoked or used drugs long term and are, for the most part, perfectly healthy.</end quote></div>

Sorry Entropy but this is not always the case. You can have done your treatments to the T and never smoked or done drugs and STILL end up needing a transplant at 19. Just because you followed all preventative measures to stay healthy does not mean your CF is going to progress slowly and that you are going to stay healthy well into your thirties. If that were true, I wouldn't be in chronic rejection and waiting for a second transplant.

CF is different in everybody, even if they have the same mutations and do the same treatments.

Scaring happens after having multiple infections and usually with each infection your lungs scar a little bit, so eventually, after multiple exasterbations and infections your lungs become so scared that you come to the point when you need to choose to have a transplant or not.

 

[CountryGirl]

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

Someone could have a very mild case but smoke, not to their treatments, etc and have extensive scarring at a young age. Others have done treatments consistently for their entire life and have never smoked or used drugs long term and are, for the most part, perfectly healthy.</end quote>

Sorry Entropy but this is not always the case. You can have done your treatments to the T and never smoked or done drugs and STILL end up needing a transplant at 19. Just because you followed all preventative measures to stay healthy does not mean your CF is going to progress slowly and that you are going to stay healthy well into your thirties. If that were true, I wouldn't be in chronic rejection and waiting for a second transplant.

CF is different in everybody, even if they have the same mutations and do the same treatments.

Scaring happens after having multiple infections and usually with each infection your lungs scar a little bit, so eventually, after multiple exasterbations and infections your lungs become so scared that you come to the point when you need to choose to have a transplant or not.

 

[CountryGirl]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>entropy</b></i>
<br />
<br /> Someone could have a very mild case but smoke, not to their treatments, etc and have extensive scarring at a young age. Others have done treatments consistently for their entire life and have never smoked or used drugs long term and are, for the most part, perfectly healthy.</end quote>
<br />
<br />Sorry Entropy but this is not always the case. You can have done your treatments to the T and never smoked or done drugs and STILL end up needing a transplant at 19. Just because you followed all preventative measures to stay healthy does not mean your CF is going to progress slowly and that you are going to stay healthy well into your thirties. If that were true, I wouldn't be in chronic rejection and waiting for a second transplant.
<br />
<br />CF is different in everybody, even if they have the same mutations and do the same treatments.
<br />
<br />Scaring happens after having multiple infections and usually with each infection your lungs scar a little bit, so eventually, after multiple exasterbations and infections your lungs become so scared that you come to the point when you need to choose to have a transplant or not.

 

[Havoc]

I think that was a generalization and not a hard statement. We all know the quirks of genotypic/phenotypic expression and with epigenetics now emerging, who knows what we might learn. I have always had an easy go of it, with very little in the way of treatment. I'm sure that will change at some point, but I am living it up while I can.

 

[Havoc]

I think that was a generalization and not a hard statement. We all know the quirks of genotypic/phenotypic expression and with epigenetics now emerging, who knows what we might learn. I have always had an easy go of it, with very little in the way of treatment. I'm sure that will change at some point, but I am living it up while I can.