Mild and Rare Cases...where are you?

wanderlost · Jul 2, 2007

Lindsay, I was much the same as you - never hospitalized, no nebs, only enzymes, decent PFTS, captain if the swim team, etc.

BUT, As I type this I am nebbing with my vest on. This all started last year. I didn't culture PA until I was 28. In trhe last year, several things have happened - I had a 2nd child, I cultrured PA, and I decided that beign proactive with my care at this age was going to keep me around much longer than good luck was. I don't like it, but one look at my little ones is enough to make me do it.

I have always stayed away from the CF community because I thought I wasn't "like them." They were sick and I was not. This web sie helped me get over that, I have to say. it doesn't make me like Cf anymore, btu it has made me realize that I am not as "mild" as I thought (there are a lot fo people with higher PFTS here than me). I also realize how lucky I am with this disease.

So I know exactly where your post is coming from. Just comtinue to care for your health - if you are a runner, keep running - be as proactive as you can now so that you still feel the same way about your health in 10 years! <img src="i/expressions/face-icon-small-smile.gif" border="0">

wanderlost · Jul 2, 2007

Lindsay, I was much the same as you - never hospitalized, no nebs, only enzymes, decent PFTS, captain if the swim team, etc.

BUT, As I type this I am nebbing with my vest on. This all started last year. I didn't culture PA until I was 28. In trhe last year, several things have happened - I had a 2nd child, I cultrured PA, and I decided that beign proactive with my care at this age was going to keep me around much longer than good luck was. I don't like it, but one look at my little ones is enough to make me do it.

I have always stayed away from the CF community because I thought I wasn't "like them." They were sick and I was not. This web sie helped me get over that, I have to say. it doesn't make me like Cf anymore, btu it has made me realize that I am not as "mild" as I thought (there are a lot fo people with higher PFTS here than me). I also realize how lucky I am with this disease.

So I know exactly where your post is coming from. Just comtinue to care for your health - if you are a runner, keep running - be as proactive as you can now so that you still feel the same way about your health in 10 years! <img src="i/expressions/face-icon-small-smile.gif" border="0">

wanderlost · Jul 2, 2007

Lindsay, I was much the same as you - never hospitalized, no nebs, only enzymes, decent PFTS, captain if the swim team, etc.

BUT, As I type this I am nebbing with my vest on. This all started last year. I didn't culture PA until I was 28. In trhe last year, several things have happened - I had a 2nd child, I cultrured PA, and I decided that beign proactive with my care at this age was going to keep me around much longer than good luck was. I don't like it, but one look at my little ones is enough to make me do it.

I have always stayed away from the CF community because I thought I wasn't "like them." They were sick and I was not. This web sie helped me get over that, I have to say. it doesn't make me like Cf anymore, btu it has made me realize that I am not as "mild" as I thought (there are a lot fo people with higher PFTS here than me). I also realize how lucky I am with this disease.

So I know exactly where your post is coming from. Just comtinue to care for your health - if you are a runner, keep running - be as proactive as you can now so that you still feel the same way about your health in 10 years! <img src="i/expressions/face-icon-small-smile.gif" border="0">

wanderlost · Jul 2, 2007

Lindsay, I was much the same as you - never hospitalized, no nebs, only enzymes, decent PFTS, captain if the swim team, etc.

BUT, As I type this I am nebbing with my vest on. This all started last year. I didn't culture PA until I was 28. In trhe last year, several things have happened - I had a 2nd child, I cultrured PA, and I decided that beign proactive with my care at this age was going to keep me around much longer than good luck was. I don't like it, but one look at my little ones is enough to make me do it.

I have always stayed away from the CF community because I thought I wasn't "like them." They were sick and I was not. This web sie helped me get over that, I have to say. it doesn't make me like Cf anymore, btu it has made me realize that I am not as "mild" as I thought (there are a lot fo people with higher PFTS here than me). I also realize how lucky I am with this disease.

So I know exactly where your post is coming from. Just comtinue to care for your health - if you are a runner, keep running - be as proactive as you can now so that you still feel the same way about your health in 10 years! <img src="i/expressions/face-icon-small-smile.gif" border="0">

wanderlost · Jul 2, 2007

Lindsay, I was much the same as you - never hospitalized, no nebs, only enzymes, decent PFTS, captain if the swim team, etc.

BUT, As I type this I am nebbing with my vest on. This all started last year. I didn't culture PA until I was 28. In trhe last year, several things have happened - I had a 2nd child, I cultrured PA, and I decided that beign proactive with my care at this age was going to keep me around much longer than good luck was. I don't like it, but one look at my little ones is enough to make me do it.

I have always stayed away from the CF community because I thought I wasn't "like them." They were sick and I was not. This web sie helped me get over that, I have to say. it doesn't make me like Cf anymore, btu it has made me realize that I am not as "mild" as I thought (there are a lot fo people with higher PFTS here than me). I also realize how lucky I am with this disease.

So I know exactly where your post is coming from. Just comtinue to care for your health - if you are a runner, keep running - be as proactive as you can now so that you still feel the same way about your health in 10 years! <img src="i/expressions/face-icon-small-smile.gif" border="0">

wanderlost · Jul 2, 2007

Lindsay, I was much the same as you - never hospitalized, no nebs, only enzymes, decent PFTS, captain if the swim team, etc.

BUT, As I type this I am nebbing with my vest on. This all started last year. I didn't culture PA until I was 28. In trhe last year, several things have happened - I had a 2nd child, I cultrured PA, and I decided that beign proactive with my care at this age was going to keep me around much longer than good luck was. I don't like it, but one look at my little ones is enough to make me do it.

I have always stayed away from the CF community because I thought I wasn't "like them." They were sick and I was not. This web sie helped me get over that, I have to say. it doesn't make me like Cf anymore, btu it has made me realize that I am not as "mild" as I thought (there are a lot fo people with higher PFTS here than me). I also realize how lucky I am with this disease.

So I know exactly where your post is coming from. Just comtinue to care for your health - if you are a runner, keep running - be as proactive as you can now so that you still feel the same way about your health in 10 years! <img src="i/expressions/face-icon-small-smile.gif" border="0">

NoExcuses · Jul 2, 2007

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

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.</end quote></div>

This is so well said.

I was diagnosed at age 6 months and I have normal lung function (FEV1 of 97%).

Lung function wise, I'm mild. But I do a lot to keep it that way because I'm not naive about what this disease can bring. I do nebs, I do my Vest, I exercise (although that is a recent thing thanks to people on this site motivating me) and I treat any flare-ups aggressively with antibiotics.

But this disease is progressive. So you can go to mild to moderate to severe quicker than you may imagine - even if you do all of your treatments.

The name of the game is prevention. If you're wondering why the heck you're on antibiotics because you don't feel <i> that </i> bad or if you don't feel that you need to do your Vest today because you feel so good - <u> that's when you know you're playing the CF game right </u>

NoExcuses · Jul 2, 2007

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

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.</end quote></div>

This is so well said.

I was diagnosed at age 6 months and I have normal lung function (FEV1 of 97%).

Lung function wise, I'm mild. But I do a lot to keep it that way because I'm not naive about what this disease can bring. I do nebs, I do my Vest, I exercise (although that is a recent thing thanks to people on this site motivating me) and I treat any flare-ups aggressively with antibiotics.

But this disease is progressive. So you can go to mild to moderate to severe quicker than you may imagine - even if you do all of your treatments.

The name of the game is prevention. If you're wondering why the heck you're on antibiotics because you don't feel <i> that </i> bad or if you don't feel that you need to do your Vest today because you feel so good - <u> that's when you know you're playing the CF game right </u>

NoExcuses · Jul 2, 2007

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

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.</end quote></div>

This is so well said.

I was diagnosed at age 6 months and I have normal lung function (FEV1 of 97%).

Lung function wise, I'm mild. But I do a lot to keep it that way because I'm not naive about what this disease can bring. I do nebs, I do my Vest, I exercise (although that is a recent thing thanks to people on this site motivating me) and I treat any flare-ups aggressively with antibiotics.

But this disease is progressive. So you can go to mild to moderate to severe quicker than you may imagine - even if you do all of your treatments.

The name of the game is prevention. If you're wondering why the heck you're on antibiotics because you don't feel <i> that </i> bad or if you don't feel that you need to do your Vest today because you feel so good - <u> that's when you know you're playing the CF game right </u>

NoExcuses · Jul 2, 2007

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

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.</end quote></div>

This is so well said.

I was diagnosed at age 6 months and I have normal lung function (FEV1 of 97%).

Lung function wise, I'm mild. But I do a lot to keep it that way because I'm not naive about what this disease can bring. I do nebs, I do my Vest, I exercise (although that is a recent thing thanks to people on this site motivating me) and I treat any flare-ups aggressively with antibiotics.

But this disease is progressive. So you can go to mild to moderate to severe quicker than you may imagine - even if you do all of your treatments.

The name of the game is prevention. If you're wondering why the heck you're on antibiotics because you don't feel <i> that </i> bad or if you don't feel that you need to do your Vest today because you feel so good - <u> that's when you know you're playing the CF game right </u>

NoExcuses · Jul 2, 2007

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

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.</end quote>

This is so well said.

I was diagnosed at age 6 months and I have normal lung function (FEV1 of 97%).

Lung function wise, I'm mild. But I do a lot to keep it that way because I'm not naive about what this disease can bring. I do nebs, I do my Vest, I exercise (although that is a recent thing thanks to people on this site motivating me) and I treat any flare-ups aggressively with antibiotics.

But this disease is progressive. So you can go to mild to moderate to severe quicker than you may imagine - even if you do all of your treatments.

The name of the game is prevention. If you're wondering why the heck you're on antibiotics because you don't feel <i> that </i> bad or if you don't feel that you need to do your Vest today because you feel so good - <u> that's when you know you're playing the CF game right </u>

NoExcuses · Jul 2, 2007

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

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.</end quote>

This is so well said.

I was diagnosed at age 6 months and I have normal lung function (FEV1 of 97%).

Lung function wise, I'm mild. But I do a lot to keep it that way because I'm not naive about what this disease can bring. I do nebs, I do my Vest, I exercise (although that is a recent thing thanks to people on this site motivating me) and I treat any flare-ups aggressively with antibiotics.

But this disease is progressive. So you can go to mild to moderate to severe quicker than you may imagine - even if you do all of your treatments.

The name of the game is prevention. If you're wondering why the heck you're on antibiotics because you don't feel <i> that </i> bad or if you don't feel that you need to do your Vest today because you feel so good - <u> that's when you know you're playing the CF game right </u>

Ricky123 · Jul 2, 2007