What is considered "mild" CF?

thelizardqueen · Feb 9, 2006

I have a mild lung case - simply because I've only been hospitalized once in my life for an infection, my PFTs are very high, my O2 levels are consistantly 99%, I rarely have lung infections (although I've had pseudo since the age of 8), and I don't cough at all when I'm not sick, which is majority of the time. I was diagnosed at 6 weeks of age, which I suppose helps that it was caught very early. So I guess I would consider myself "mild"

thelizardqueen · Feb 9, 2006

I have a mild lung case - simply because I've only been hospitalized once in my life for an infection, my PFTs are very high, my O2 levels are consistantly 99%, I rarely have lung infections (although I've had pseudo since the age of 8), and I don't cough at all when I'm not sick, which is majority of the time. I was diagnosed at 6 weeks of age, which I suppose helps that it was caught very early. So I guess I would consider myself "mild"

anonymous · Feb 9, 2006

I just had my cf appointment checkup.

I am constantly told I have mild cf by my doctor and that I should buy a lotto ticket!!!!

I am 28 my lung function is always 100+% and I am yet to have a hospital admisison. I do have diabetes though diagnosed in 2002. workout constantly do my physio and am health conscious however I still enjoy a beer or two and socialising. I dodntw ant CF to define who I am.

I take creon and thats it my doc said its freaky that in 28 tears your lung function has not changed he said I must have a rare mutation Im waiting to find out more about it in 4 months when i go back I as diagnised at three months. Having a rare mutation can be anegative though he said especially if a cure is found! But truthfully I dodnt put all my faith in a cure as its been said to me the past 10-15 years who knows hope is good bt I still try and be a realist as well.

I think Sean summed it up treatment adherence, mental health, socail support, genetics, luck all help in determining cf as being mild moderate or severe.

Jake 28 Melbourne Australia cfrd

anonymous · Feb 9, 2006

I just had my cf appointment checkup.

I am constantly told I have mild cf by my doctor and that I should buy a lotto ticket!!!!

I am 28 my lung function is always 100+% and I am yet to have a hospital admisison. I do have diabetes though diagnosed in 2002. workout constantly do my physio and am health conscious however I still enjoy a beer or two and socialising. I dodntw ant CF to define who I am.

I take creon and thats it my doc said its freaky that in 28 tears your lung function has not changed he said I must have a rare mutation Im waiting to find out more about it in 4 months when i go back I as diagnised at three months. Having a rare mutation can be anegative though he said especially if a cure is found! But truthfully I dodnt put all my faith in a cure as its been said to me the past 10-15 years who knows hope is good bt I still try and be a realist as well.

I think Sean summed it up treatment adherence, mental health, socail support, genetics, luck all help in determining cf as being mild moderate or severe.

Jake 28 Melbourne Australia cfrd

2005CFmom · Feb 10, 2006

I agree with some of the other posters about "mild" CF being only a description of their current condition. And that mild will turn into moderate and then severe.

One expection may be this...My daughter had a substitute teacher and her niece also has CF. But her niece has a rare mutation that only causes the GI problems... no lung involvement. If that is truely the case then I would consider that "MILD CF" since it is the lung involvement that causes the most problems/death in CF.

2005CFmom · Feb 10, 2006

I agree with some of the other posters about "mild" CF being only a description of their current condition. And that mild will turn into moderate and then severe.

One expection may be this...My daughter had a substitute teacher and her niece also has CF. But her niece has a rare mutation that only causes the GI problems... no lung involvement. If that is truely the case then I would consider that "MILD CF" since it is the lung involvement that causes the most problems/death in CF.

thelizardqueen · Feb 10, 2006

Fair enough, but even the people who don't have lung damage...can't they still catch pseudo? This has me curious, as CF is a lung disorder, and every single CFer I know, has some sort of lung problem even if it is very mild. It seems to me that CFer's die from lung damage and not digestive problems. I've never heard of someone not dieing from CF.

thelizardqueen · Feb 10, 2006

Fair enough, but even the people who don't have lung damage...can't they still catch pseudo? This has me curious, as CF is a lung disorder, and every single CFer I know, has some sort of lung problem even if it is very mild. It seems to me that CFer's die from lung damage and not digestive problems. I've never heard of someone not dieing from CF.

anonymous · Feb 10, 2006

there many different forms of the mutation that is why different people have different severities (spelling)

anonymous · Feb 10, 2006

there many different forms of the mutation that is why different people have different severities (spelling)

JBUCCA · Feb 12, 2006

i was told too my case is mild, although when i get sick it dont seem mild, i also was told i have the 2 worst mutations delta.... something i forgot, but my dr said you cant go by that because its how you are and how you take care of yourself... i dont know does the savaritiy go by the mutations????

JBUCCA · Feb 12, 2006

i was told too my case is mild, although when i get sick it dont seem mild, i also was told i have the 2 worst mutations delta.... something i forgot, but my dr said you cant go by that because its how you are and how you take care of yourself... i dont know does the savaritiy go by the mutations????

thelizardqueen · Feb 12, 2006

<blockquote>Quote <hr>Originally posted by: JBUCCA i was told too my case is mild, although when i get sick it dont seem mild, i also was told i have the 2 worst mutations delta.... something i forgot, but my dr said you cant go by that because its how you are and how you take care of yourself... i dont know does the savaritiy go by the mutations????<hr></blockquote>

I think severity goes by mutation. I mean there are people that do everything under the sun to stay in control of their lungs, and they still can't catch a break. Meanwhile, there are people who hardly do anything at all, and their lungs are clear. I think it has a lot to do with what mutation you have.

thelizardqueen · Feb 12, 2006

<blockquote>Quote <hr>Originally posted by: JBUCCA i was told too my case is mild, although when i get sick it dont seem mild, i also was told i have the 2 worst mutations delta.... something i forgot, but my dr said you cant go by that because its how you are and how you take care of yourself... i dont know does the savaritiy go by the mutations????<hr></blockquote>

I think severity goes by mutation. I mean there are people that do everything under the sun to stay in control of their lungs, and they still can't catch a break. Meanwhile, there are people who hardly do anything at all, and their lungs are clear. I think it has a lot to do with what mutation you have.

JBUCCA · Feb 12, 2006

but i think i have the worst ones there are. and im pretty healthy, considering and have a 3 year old son, which pregnacy i swear made me healthyer.. or god just looked out for me.. so how does it go by that???

JBUCCA · Feb 12, 2006

but i think i have the worst ones there are. and im pretty healthy, considering and have a 3 year old son, which pregnacy i swear made me healthyer.. or god just looked out for me.. so how does it go by that???

thelizardqueen · Feb 12, 2006

I look at mild CF this way: When I was born, there were 4 other people born within 2 years of me also with CF. These people continually had lun gproblems right from the beginning, and they all were in hospital on a regular basis starting around the age of 8. I didn't go into hospital till I was 15, and that was my only time in. These 4 people died at ages 19, 21, 23 & 24. I'm 24 going on 25 this year, and I don't even have the same problems they had at 10 years old. That's why I have mild CF.

thelizardqueen · Feb 12, 2006

I look at mild CF this way: When I was born, there were 4 other people born within 2 years of me also with CF. These people continually had lun gproblems right from the beginning, and they all were in hospital on a regular basis starting around the age of 8. I didn't go into hospital till I was 15, and that was my only time in. These 4 people died at ages 19, 21, 23 & 24. I'm 24 going on 25 this year, and I don't even have the same problems they had at 10 years old. That's why I have mild CF.

anonymous · Feb 12, 2006

Mild CF is my daughter Lauren 15, not diagnosed until 10. She hardly never coughs, very healthy, gaining weight, maybe too much weight, Ha ha. She has never been hospitalized for CF, never had IV's. The Drs. can only find one mutation, rare, L997F. So this to me is considered mild CF for now. I know at any time this can change.
Joan

anonymous · Feb 12, 2006

Mild CF is my daughter Lauren 15, not diagnosed until 10. She hardly never coughs, very healthy, gaining weight, maybe too much weight, Ha ha. She has never been hospitalized for CF, never had IV's. The Drs. can only find one mutation, rare, L997F. So this to me is considered mild CF for now. I know at any time this can change.
Joan

What is considered "mild" CF?

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