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Are there ''mild'' cfers?

P

princessjdc

New member
According to the chart above Im considered mild, 2 years ago, I was considered moderate with pfts being 65. Today they are 85.
 
P

princessjdc

New member
According to the chart above Im considered mild, 2 years ago, I was considered moderate with pfts being 65. Today they are 85.
 
F

Fruity

New member
No, not every cold or pneumonia will cause scar tissue. Those are short term infections. It is usually secondary lung infections from colds that are problematic. Pneumonia ins't good by any means, especially for the CFer, but in consideration of the other bugs out there, pnuemonia is fairly treatable and doesn't linger (if I understand it correctly. Anyone?) The things that cause lung damage and scar tissue are bugs like mucoid Psuedomonas Aeruigosa, B. Cepacia and MRSA. These bugs are hard to kill and so when they sit in the lungs and the extra mucus that they cause, is what gnerates the lung damage. If we get IV treatments to kill these bugs or keep them at a reasonable growth count, our lung damage and scar tissue is held at bay, and hopefully our pfts will stay steady or decline only slowly. We all usually get drops in our pfts after an infection and depending on where we are health wise, we may or may not gain those points back, but IV's are a vital part to keeping healthy to the CFer.

<br>Hope that helps. Be well.


<br> Ceci
 
F

Fruity

New member
No, not every cold or pneumonia will cause scar tissue. Those are short term infections. It is usually secondary lung infections from colds that are problematic. Pneumonia ins't good by any means, especially for the CFer, but in consideration of the other bugs out there, pnuemonia is fairly treatable and doesn't linger (if I understand it correctly. Anyone?) The things that cause lung damage and scar tissue are bugs like mucoid Psuedomonas Aeruigosa, B. Cepacia and MRSA. These bugs are hard to kill and so when they sit in the lungs and the extra mucus that they cause, is what gnerates the lung damage. If we get IV treatments to kill these bugs or keep them at a reasonable growth count, our lung damage and scar tissue is held at bay, and hopefully our pfts will stay steady or decline only slowly. We all usually get drops in our pfts after an infection and depending on where we are health wise, we may or may not gain those points back, but IV's are a vital part to keeping healthy to the CFer.

<br>Hope that helps. Be well.


<br> Ceci
 
F

Fruity

New member
No, not every cold or pneumonia will cause scar tissue. Those are short term infections. It is usually secondary lung infections from colds that are problematic. Pneumonia ins't good by any means, especially for the CFer, but in consideration of the other bugs out there, pnuemonia is fairly treatable and doesn't linger (if I understand it correctly. Anyone?) The things that cause lung damage and scar tissue are bugs like mucoid Psuedomonas Aeruigosa, B. Cepacia and MRSA. These bugs are hard to kill and so when they sit in the lungs and the extra mucus that they cause, is what gnerates the lung damage. If we get IV treatments to kill these bugs or keep them at a reasonable growth count, our lung damage and scar tissue is held at bay, and hopefully our pfts will stay steady or decline only slowly. We all usually get drops in our pfts after an infection and depending on where we are health wise, we may or may not gain those points back, but IV's are a vital part to keeping healthy to the CFer.

<br>Hope that helps. Be well.


<br> Ceci
 
B

BaggedCereals

New member
I am 24 years old....my PFT's are in the low 40's. I have a feeding tube and have struggled with my weight my entire life. I have good days and bad ones. Overall i dont know where i stand..i think my clinic has me labled as severre?
 
B

BaggedCereals

New member
I am 24 years old....my PFT's are in the low 40's. I have a feeding tube and have struggled with my weight my entire life. I have good days and bad ones. Overall i dont know where i stand..i think my clinic has me labled as severre?
 
B

BaggedCereals

New member
I am 24 years old....my PFT's are in the low 40's. I have a feeding tube and have struggled with my weight my entire life. I have good days and bad ones. Overall i dont know where i stand..i think my clinic has me labled as severre?
 
W

wanderlost

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

i always wonder why people let their PFT's slip to the 70s and 60s without having been on IV's?



is it that you don't care if your lung function declines? is it a pride thing so you can say to yourself that you've never been on IV's? or is it that you're willing to take the trade off of lung function decline for not having to go into the hospital (this is the one I'm thinking that it is)?</end quote></div>

Well maybe. I care that my lung function declines, though it really hasn't in years...yes, it is in the 70s, but I can't tell you at what point in my life it was higher than that.

As a teenager, I hardly told anyone I had Cf, so I was NOT going to go to the hospital...though honeslty, it never came up. As an adult, life got busier and busier, but I always felt fine. It wasn't like I woke up one morning gasping for breath, so it was easy to not worry about it. My docs have NEVER suggested IVs - so whatever that means on their part - I am just now to the point where pride aside, I have a disease I have to deal with. I am still in no hurry to pull up my sleeves and run off to the hospital, but I am much more willing to do so at this point in my life than I was 10 year ago.
 
W

wanderlost

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

i always wonder why people let their PFT's slip to the 70s and 60s without having been on IV's?



is it that you don't care if your lung function declines? is it a pride thing so you can say to yourself that you've never been on IV's? or is it that you're willing to take the trade off of lung function decline for not having to go into the hospital (this is the one I'm thinking that it is)?</end quote></div>

Well maybe. I care that my lung function declines, though it really hasn't in years...yes, it is in the 70s, but I can't tell you at what point in my life it was higher than that.

As a teenager, I hardly told anyone I had Cf, so I was NOT going to go to the hospital...though honeslty, it never came up. As an adult, life got busier and busier, but I always felt fine. It wasn't like I woke up one morning gasping for breath, so it was easy to not worry about it. My docs have NEVER suggested IVs - so whatever that means on their part - I am just now to the point where pride aside, I have a disease I have to deal with. I am still in no hurry to pull up my sleeves and run off to the hospital, but I am much more willing to do so at this point in my life than I was 10 year ago.
 
W

wanderlost

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

i always wonder why people let their PFT's slip to the 70s and 60s without having been on IV's?



is it that you don't care if your lung function declines? is it a pride thing so you can say to yourself that you've never been on IV's? or is it that you're willing to take the trade off of lung function decline for not having to go into the hospital (this is the one I'm thinking that it is)?</end quote></div>

Well maybe. I care that my lung function declines, though it really hasn't in years...yes, it is in the 70s, but I can't tell you at what point in my life it was higher than that.

As a teenager, I hardly told anyone I had Cf, so I was NOT going to go to the hospital...though honeslty, it never came up. As an adult, life got busier and busier, but I always felt fine. It wasn't like I woke up one morning gasping for breath, so it was easy to not worry about it. My docs have NEVER suggested IVs - so whatever that means on their part - I am just now to the point where pride aside, I have a disease I have to deal with. I am still in no hurry to pull up my sleeves and run off to the hospital, but I am much more willing to do so at this point in my life than I was 10 year ago.
 
J

JennifersHope

New member
I am the second most mild CF case I know of.. The other person I know is a brand new nurse at my hospital and she was only dx with CF because her son tested positive for it when he was born.. I don't believe she was ever sick a day in her life..

I have been on IV's a ton of times, in the past few years it has been at least 3-4 times a year.. but my lungs seem to be so unlike CF.. they don't have to much damage in them and x rays are clear except when I have pneumonia..

I take enzymes but I am overweight ( i think from all the steroids I take) My colon had a major issue not that long ago, that was exacerbated by CF.. but overall I think sometimes the steroids I have to take for my adrenal gland disease is my worst enemy and somehow will be linked to my death more then the steroids.. even if it is I get a nasty infection because I am even more compromised....

So mild yes, very, healthy NO, not even close...

Jennifer
 
J

JennifersHope

New member
I am the second most mild CF case I know of.. The other person I know is a brand new nurse at my hospital and she was only dx with CF because her son tested positive for it when he was born.. I don't believe she was ever sick a day in her life..

I have been on IV's a ton of times, in the past few years it has been at least 3-4 times a year.. but my lungs seem to be so unlike CF.. they don't have to much damage in them and x rays are clear except when I have pneumonia..

I take enzymes but I am overweight ( i think from all the steroids I take) My colon had a major issue not that long ago, that was exacerbated by CF.. but overall I think sometimes the steroids I have to take for my adrenal gland disease is my worst enemy and somehow will be linked to my death more then the steroids.. even if it is I get a nasty infection because I am even more compromised....

So mild yes, very, healthy NO, not even close...

Jennifer
 
J

JennifersHope

New member
I am the second most mild CF case I know of.. The other person I know is a brand new nurse at my hospital and she was only dx with CF because her son tested positive for it when he was born.. I don't believe she was ever sick a day in her life..

I have been on IV's a ton of times, in the past few years it has been at least 3-4 times a year.. but my lungs seem to be so unlike CF.. they don't have to much damage in them and x rays are clear except when I have pneumonia..

I take enzymes but I am overweight ( i think from all the steroids I take) My colon had a major issue not that long ago, that was exacerbated by CF.. but overall I think sometimes the steroids I have to take for my adrenal gland disease is my worst enemy and somehow will be linked to my death more then the steroids.. even if it is I get a nasty infection because I am even more compromised....

So mild yes, very, healthy NO, not even close...

Jennifer
 
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