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What is your FEV1 Score?

W

welshwitch

Guest
1.) I have psuedomonas (since I was 12) and I also have MRSA! But it doesn't seem to affect my FEV <img src="i/expressions/face-icon-small-smile.gif" border="0">
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<br />2.) I don't know if my mutations are "mild" but they are, as the geneticists say, "unusual" for CF. ( you can see them in my sig)
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<br />3.) I also believe in the power of modifier genes <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Kristen

New member
1) Long answer - I started culturing staph in my late teens, I believe. I cultured PA for the first time when I was 23. My cultures started showing "normal flora" about three years ago. Then they showed staph for a bit, and then it was back to "normal flora" for about a year. HOWEVER, I am never able to cough anything up at CF clinic, so all of my cultures have been throat swab. I've been reading up on this a bit and saw a study that showed throat cultures can give a lot of false negatives (meaning, a normal flora culture taken by throat swab is often not what's really growing in a person's lungs). I got bronchitis this fall and managed to cough something up and guess what showed up? PA. It was present in low levels. Now I'm wondering if I may have had it all this time. I am going to talk to my CF doctor about taking home a sterile cup so I can bring in a sample when I cough something up.

2). R117H is considered a milder mutation, but I've read it's severity can be affected by the allele it's associated with.
 

Kristen

New member
1) Long answer - I started culturing staph in my late teens, I believe. I cultured PA for the first time when I was 23. My cultures started showing "normal flora" about three years ago. Then they showed staph for a bit, and then it was back to "normal flora" for about a year. HOWEVER, I am never able to cough anything up at CF clinic, so all of my cultures have been throat swab. I've been reading up on this a bit and saw a study that showed throat cultures can give a lot of false negatives (meaning, a normal flora culture taken by throat swab is often not what's really growing in a person's lungs). I got bronchitis this fall and managed to cough something up and guess what showed up? PA. It was present in low levels. Now I'm wondering if I may have had it all this time. I am going to talk to my CF doctor about taking home a sterile cup so I can bring in a sample when I cough something up.

2). R117H is considered a milder mutation, but I've read it's severity can be affected by the allele it's associated with.
 

Kristen

New member
1) Long answer - I started culturing staph in my late teens, I believe. I cultured PA for the first time when I was 23. My cultures started showing "normal flora" about three years ago. Then they showed staph for a bit, and then it was back to "normal flora" for about a year. HOWEVER, I am never able to cough anything up at CF clinic, so all of my cultures have been throat swab. I've been reading up on this a bit and saw a study that showed throat cultures can give a lot of false negatives (meaning, a normal flora culture taken by throat swab is often not what's really growing in a person's lungs). I got bronchitis this fall and managed to cough something up and guess what showed up? PA. It was present in low levels. Now I'm wondering if I may have had it all this time. I am going to talk to my CF doctor about taking home a sterile cup so I can bring in a sample when I cough something up.
<br />
<br />2). R117H is considered a milder mutation, but I've read it's severity can be affected by the allele it's associated with.
 

BlueBeam

New member
78%<br><br>i've been hitting the gym recently, i'm guessing it's a bit higher now<br><br>edit: i'm almost 26...<br><br>i've been as low as 40%, my highest during adult life was about 85% (24yr old)<br><br>i'm trying to steady it around 80% for the longest time possible.<br>
 

BlueBeam

New member
78%<br><br>i've been hitting the gym recently, i'm guessing it's a bit higher now<br><br>edit: i'm almost 26...<br><br>i've been as low as 40%, my highest during adult life was about 85% (24yr old)<br><br>i'm trying to steady it around 80% for the longest time possible.<br>
 

BlueBeam

New member
78%<br><br>i've been hitting the gym recently, i'm guessing it's a bit higher now<br><br>edit: i'm almost 26...<br><br>i've been as low as 40%, my highest during adult life was about 85% (24yr old)<br><br>i'm trying to steady it around 80% for the longest time possible.<br>
 

TheMustanger

New member
19%...but honestly I'm doing good, just waitin for new lungs... and 3.5L at rest 4L while walkin <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

TheMustanger

New member
19%...but honestly I'm doing good, just waitin for new lungs... and 3.5L at rest 4L while walkin <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

TheMustanger

New member
19%...but honestly I'm doing good, just waitin for new lungs... and 3.5L at rest 4L while walkin <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

AnnieT

New member
Silly question..is there a way to raise my FEV1 score? Or is it permanently low..will working out more raise it if I can loosen the junk out of my chest?
 

AnnieT

New member
Silly question..is there a way to raise my FEV1 score? Or is it permanently low..will working out more raise it if I can loosen the junk out of my chest?
 

AnnieT

New member
Silly question..is there a way to raise my FEV1 score? Or is it permanently low..will working out more raise it if I can loosen the junk out of my chest?
 

BlueBeam

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

Silly question..is there a way to raise my FEV1 score? Or is it permanently low..will working out more raise it if I can loosen the junk out of my chest?</end quote></div>yes you can, don't let people tell you otherwise.<br><br>runing is the best, gaining muscle will also help you fight infections (from experience), you can try something like p90x. good luck!<br>
 

BlueBeam

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

Silly question..is there a way to raise my FEV1 score? Or is it permanently low..will working out more raise it if I can loosen the junk out of my chest?</end quote>yes you can, don't let people tell you otherwise.<br><br>runing is the best, gaining muscle will also help you fight infections (from experience), you can try something like p90x. good luck!<br>
 

BlueBeam

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

Silly question..is there a way to raise my FEV1 score? Or is it permanently low..will working out more raise it if I can loosen the junk out of my chest?</end quote>yes you can, don't let people tell you otherwise.<br><br>runing is the best, gaining muscle will also help you fight infections (from experience), you can try something like p90x. good luck!<br>
 
W

welshwitch

Guest
The way I think about it is: everytime I go on a run, it's like I'm taking a vacuum cleaner to my lungs. The more often I do it, the less time the junk has to come back! It is a fabulous "detox" that can only raise your FEV1.
 
W

welshwitch

Guest
The way I think about it is: everytime I go on a run, it's like I'm taking a vacuum cleaner to my lungs. The more often I do it, the less time the junk has to come back! It is a fabulous "detox" that can only raise your FEV1.
 
W

welshwitch

Guest
The way I think about it is: everytime I go on a run, it's like I'm taking a vacuum cleaner to my lungs. The more often I do it, the less time the junk has to come back! It is a fabulous "detox" that can only raise your FEV1.
 
87% in June 2011 (112% in February 2012)28yo female: I do not do any breathing treatments or take antibiotics regularly (now I do Cayston).  I run quite a bit.  Pilates and yoga (other exercise) helps to keep it stable or raise it.  Weight training actually seems to help me feel the best. 
 
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