What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Are there ''mild'' cfers?

relat

New member
Some people consider themselves as ''mild'' cases.with what standars? Who is considered to belong to this category when everybody knows cf is unpredictable?



relat
 

relat

New member
Some people consider themselves as ''mild'' cases.with what standars? Who is considered to belong to this category when everybody knows cf is unpredictable?



relat
 

relat

New member
Some people consider themselves as ''mild'' cases.with what standars? Who is considered to belong to this category when everybody knows cf is unpredictable?



relat
 

JazzysMom

New member
People have different ways of measuring the mild, moderate, severe. I personally went with my overall health & pfts which put me as mild until my mid twenties where I went to moderate and by 33 I was severe.
 

JazzysMom

New member
People have different ways of measuring the mild, moderate, severe. I personally went with my overall health & pfts which put me as mild until my mid twenties where I went to moderate and by 33 I was severe.
 

JazzysMom

New member
People have different ways of measuring the mild, moderate, severe. I personally went with my overall health & pfts which put me as mild until my mid twenties where I went to moderate and by 33 I was severe.
 

CaliSally

New member
Does the specific defected gene have anything to do with it, at least, initially?

I know the ONLY problem I had was my digestion. I wasn't brought up doing b/t's AT ALL. I think I was in my 20's before I had my first lung infection, and in my 30's when I had my first I.V.

However, BECAUSE I wasn't doing b/t's as standard procedure (because I was naive and thought I would never be the typical CFer), I got sick big time. I laid in bed thinking I only had the flu...and because of waiting to treat with antibiotics, I damaged my lungs, causing me to have to retire from work (at the age of 35/36). Although I'm probably still considered mild to moderate, but my FEV1 is 39%, o2 is 94%.

Had I been doing b/t's everyday, my guess is that I would still be considered very mild. But that's just a guess, since no one knows how many days they are alloted, with or without CF.

I still think the genes determine what stage <i>we are born at </i>with CF. I had a baby brother who had lots of lung trouble and died at 18 months. ..and here I am at 40.
 

CaliSally

New member
Does the specific defected gene have anything to do with it, at least, initially?

I know the ONLY problem I had was my digestion. I wasn't brought up doing b/t's AT ALL. I think I was in my 20's before I had my first lung infection, and in my 30's when I had my first I.V.

However, BECAUSE I wasn't doing b/t's as standard procedure (because I was naive and thought I would never be the typical CFer), I got sick big time. I laid in bed thinking I only had the flu...and because of waiting to treat with antibiotics, I damaged my lungs, causing me to have to retire from work (at the age of 35/36). Although I'm probably still considered mild to moderate, but my FEV1 is 39%, o2 is 94%.

Had I been doing b/t's everyday, my guess is that I would still be considered very mild. But that's just a guess, since no one knows how many days they are alloted, with or without CF.

I still think the genes determine what stage <i>we are born at </i>with CF. I had a baby brother who had lots of lung trouble and died at 18 months. ..and here I am at 40.
 

CaliSally

New member
Does the specific defected gene have anything to do with it, at least, initially?

I know the ONLY problem I had was my digestion. I wasn't brought up doing b/t's AT ALL. I think I was in my 20's before I had my first lung infection, and in my 30's when I had my first I.V.

However, BECAUSE I wasn't doing b/t's as standard procedure (because I was naive and thought I would never be the typical CFer), I got sick big time. I laid in bed thinking I only had the flu...and because of waiting to treat with antibiotics, I damaged my lungs, causing me to have to retire from work (at the age of 35/36). Although I'm probably still considered mild to moderate, but my FEV1 is 39%, o2 is 94%.

Had I been doing b/t's everyday, my guess is that I would still be considered very mild. But that's just a guess, since no one knows how many days they are alloted, with or without CF.

I still think the genes determine what stage <i>we are born at </i>with CF. I had a baby brother who had lots of lung trouble and died at 18 months. ..and here I am at 40.
 

LouLou

New member
I've seen reference to these specific #'s many times in online journals/articles.

"<i>As suggested by the CF Foundation, severity of illness was defined based on the percent expected FEV1 as;
mild (FEV1 >= 70%),
moderate (FEV1 >= 40%-69%), or
severe (FEV1 <40%).</i>"

I copied this from this source. <a target=_blank class=ftalternatingbarlinklarge href="http://pediatrics.aappublications.org/cgi/content/full/103/6/e72
">http://pediatrics.aappublicati.../full/103/6/e72
</a>

Personally, I also think of a 4th stage - End stage - FEV1 below 30% (because this is the point at which a patient becomes elgible for lung transplant and I don't remember the average life expectancy w/o a lungs transplant but I don't recall it being more than 5 years).
 

LouLou

New member
I've seen reference to these specific #'s many times in online journals/articles.

"<i>As suggested by the CF Foundation, severity of illness was defined based on the percent expected FEV1 as;
mild (FEV1 >= 70%),
moderate (FEV1 >= 40%-69%), or
severe (FEV1 <40%).</i>"

I copied this from this source. <a target=_blank class=ftalternatingbarlinklarge href="http://pediatrics.aappublications.org/cgi/content/full/103/6/e72
">http://pediatrics.aappublicati.../full/103/6/e72
</a>

Personally, I also think of a 4th stage - End stage - FEV1 below 30% (because this is the point at which a patient becomes elgible for lung transplant and I don't remember the average life expectancy w/o a lungs transplant but I don't recall it being more than 5 years).
 

LouLou

New member
I've seen reference to these specific #'s many times in online journals/articles.

"<i>As suggested by the CF Foundation, severity of illness was defined based on the percent expected FEV1 as;
mild (FEV1 >= 70%),
moderate (FEV1 >= 40%-69%), or
severe (FEV1 <40%).</i>"

I copied this from this source. <a target=_blank class=ftalternatingbarlinklarge href="http://pediatrics.aappublications.org/cgi/content/full/103/6/e72
">http://pediatrics.aappublicati.../full/103/6/e72
</a>

Personally, I also think of a 4th stage - End stage - FEV1 below 30% (because this is the point at which a patient becomes elgible for lung transplant and I don't remember the average life expectancy w/o a lungs transplant but I don't recall it being more than 5 years).
 

relat

New member
I personally could consider somebody as mild,when he doesn't have many issues with his cf,or he has a health that doesn't change with the time.I may be wrong.Maybe all cfers progress so someone may be at one time mild and at one other time severe....in the second case i agree with the Fev's theory.But i still think mildness has to do with the first.Am i wrong?you know better.


relat,27,having 26 yr old brother w/cf
 

relat

New member
I personally could consider somebody as mild,when he doesn't have many issues with his cf,or he has a health that doesn't change with the time.I may be wrong.Maybe all cfers progress so someone may be at one time mild and at one other time severe....in the second case i agree with the Fev's theory.But i still think mildness has to do with the first.Am i wrong?you know better.


relat,27,having 26 yr old brother w/cf
 

relat

New member
I personally could consider somebody as mild,when he doesn't have many issues with his cf,or he has a health that doesn't change with the time.I may be wrong.Maybe all cfers progress so someone may be at one time mild and at one other time severe....in the second case i agree with the Fev's theory.But i still think mildness has to do with the first.Am i wrong?you know better.


relat,27,having 26 yr old brother w/cf
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>relat</b></i>
he has a health that doesn't change with the time.


</end quote></div>

there has never been in a CFer, or any human being for that matter, that fits that description.

every person's health changes with time.

Loulou's description is accurate.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>relat</b></i>
he has a health that doesn't change with the time.


</end quote></div>

there has never been in a CFer, or any human being for that matter, that fits that description.

every person's health changes with time.

Loulou's description is accurate.
 
Top