Mild and Rare Cases...where are you?

L

lmattaway

New member
While I enjoy reading the different topics and seeing everyone's individual journey with CF, I sometimes have a hard time relating b/c my Cf is so mild. My PFTs are in 100s, I've only ever been hospitalized for the removal of nasal polyps (3 surgeries later, I've lost all sense of smell) and my only routine is taking enzymes with food and having a dose of Miralax with dinner (which is the BEST stuff ever). I don't do chest PT or nebulizers (unless I have a cough I can't get rid of). My proudest moment was finishing the Chicago Marathon my senior year of college.

I guess what I'm asking is... are there others out there who were diagnosed early on, as a child, but are doing really well? Do you sometimes have a hard time feeling truly "included" in the CF community when you don't have hospital stories or IV tales to tell? Or do you ever feel kinda guilty that you're doing so well while others are not? (side note: this was one of the main reasons I wanted to run the marathon, b/c i knew there were tons of CFers who would give anything to be able to do so and I felt I owed it to them to make the most of the health with which I've been blessed)

I understand that those of you who were diagnosed as adults probably have some of the same "outsider" feelings, finding out so late in life and being thrown into this community. Please feel free to respond as well. Just wondering what others are thinking on this... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lmattaway

New member
While I enjoy reading the different topics and seeing everyone's individual journey with CF, I sometimes have a hard time relating b/c my Cf is so mild. My PFTs are in 100s, I've only ever been hospitalized for the removal of nasal polyps (3 surgeries later, I've lost all sense of smell) and my only routine is taking enzymes with food and having a dose of Miralax with dinner (which is the BEST stuff ever). I don't do chest PT or nebulizers (unless I have a cough I can't get rid of). My proudest moment was finishing the Chicago Marathon my senior year of college.

I guess what I'm asking is... are there others out there who were diagnosed early on, as a child, but are doing really well? Do you sometimes have a hard time feeling truly "included" in the CF community when you don't have hospital stories or IV tales to tell? Or do you ever feel kinda guilty that you're doing so well while others are not? (side note: this was one of the main reasons I wanted to run the marathon, b/c i knew there were tons of CFers who would give anything to be able to do so and I felt I owed it to them to make the most of the health with which I've been blessed)

I understand that those of you who were diagnosed as adults probably have some of the same "outsider" feelings, finding out so late in life and being thrown into this community. Please feel free to respond as well. Just wondering what others are thinking on this... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lmattaway

New member
While I enjoy reading the different topics and seeing everyone's individual journey with CF, I sometimes have a hard time relating b/c my Cf is so mild. My PFTs are in 100s, I've only ever been hospitalized for the removal of nasal polyps (3 surgeries later, I've lost all sense of smell) and my only routine is taking enzymes with food and having a dose of Miralax with dinner (which is the BEST stuff ever). I don't do chest PT or nebulizers (unless I have a cough I can't get rid of). My proudest moment was finishing the Chicago Marathon my senior year of college.

I guess what I'm asking is... are there others out there who were diagnosed early on, as a child, but are doing really well? Do you sometimes have a hard time feeling truly "included" in the CF community when you don't have hospital stories or IV tales to tell? Or do you ever feel kinda guilty that you're doing so well while others are not? (side note: this was one of the main reasons I wanted to run the marathon, b/c i knew there were tons of CFers who would give anything to be able to do so and I felt I owed it to them to make the most of the health with which I've been blessed)

I understand that those of you who were diagnosed as adults probably have some of the same "outsider" feelings, finding out so late in life and being thrown into this community. Please feel free to respond as well. Just wondering what others are thinking on this... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lmattaway

New member
While I enjoy reading the different topics and seeing everyone's individual journey with CF, I sometimes have a hard time relating b/c my Cf is so mild. My PFTs are in 100s, I've only ever been hospitalized for the removal of nasal polyps (3 surgeries later, I've lost all sense of smell) and my only routine is taking enzymes with food and having a dose of Miralax with dinner (which is the BEST stuff ever). I don't do chest PT or nebulizers (unless I have a cough I can't get rid of). My proudest moment was finishing the Chicago Marathon my senior year of college.

I guess what I'm asking is... are there others out there who were diagnosed early on, as a child, but are doing really well? Do you sometimes have a hard time feeling truly "included" in the CF community when you don't have hospital stories or IV tales to tell? Or do you ever feel kinda guilty that you're doing so well while others are not? (side note: this was one of the main reasons I wanted to run the marathon, b/c i knew there were tons of CFers who would give anything to be able to do so and I felt I owed it to them to make the most of the health with which I've been blessed)

I understand that those of you who were diagnosed as adults probably have some of the same "outsider" feelings, finding out so late in life and being thrown into this community. Please feel free to respond as well. Just wondering what others are thinking on this... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lmattaway

New member
While I enjoy reading the different topics and seeing everyone's individual journey with CF, I sometimes have a hard time relating b/c my Cf is so mild. My PFTs are in 100s, I've only ever been hospitalized for the removal of nasal polyps (3 surgeries later, I've lost all sense of smell) and my only routine is taking enzymes with food and having a dose of Miralax with dinner (which is the BEST stuff ever). I don't do chest PT or nebulizers (unless I have a cough I can't get rid of). My proudest moment was finishing the Chicago Marathon my senior year of college.

I guess what I'm asking is... are there others out there who were diagnosed early on, as a child, but are doing really well? Do you sometimes have a hard time feeling truly "included" in the CF community when you don't have hospital stories or IV tales to tell? Or do you ever feel kinda guilty that you're doing so well while others are not? (side note: this was one of the main reasons I wanted to run the marathon, b/c i knew there were tons of CFers who would give anything to be able to do so and I felt I owed it to them to make the most of the health with which I've been blessed)

I understand that those of you who were diagnosed as adults probably have some of the same "outsider" feelings, finding out so late in life and being thrown into this community. Please feel free to respond as well. Just wondering what others are thinking on this... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lmattaway

New member
While I enjoy reading the different topics and seeing everyone's individual journey with CF, I sometimes have a hard time relating b/c my Cf is so mild. My PFTs are in 100s, I've only ever been hospitalized for the removal of nasal polyps (3 surgeries later, I've lost all sense of smell) and my only routine is taking enzymes with food and having a dose of Miralax with dinner (which is the BEST stuff ever). I don't do chest PT or nebulizers (unless I have a cough I can't get rid of). My proudest moment was finishing the Chicago Marathon my senior year of college.

I guess what I'm asking is... are there others out there who were diagnosed early on, as a child, but are doing really well? Do you sometimes have a hard time feeling truly "included" in the CF community when you don't have hospital stories or IV tales to tell? Or do you ever feel kinda guilty that you're doing so well while others are not? (side note: this was one of the main reasons I wanted to run the marathon, b/c i knew there were tons of CFers who would give anything to be able to do so and I felt I owed it to them to make the most of the health with which I've been blessed)

I understand that those of you who were diagnosed as adults probably have some of the same "outsider" feelings, finding out so late in life and being thrown into this community. Please feel free to respond as well. Just wondering what others are thinking on this... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

karismom

New member
You are indeed very very lucky hon, and YES my daughter Holli has a VERY mild case at 21 yrs old as opposed to her sis who is post tx x 2. but.....cf is cf. and can turn on you in a heartbeat. Kari has been so sick and has gone through SO MUCH, and is still here! and those like Frankie are gone.................just like that. It is an evil and CUNNING disease, do not UNDERESTIMATE it even for ONE split second.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
You are indeed very very lucky hon, and YES my daughter Holli has a VERY mild case at 21 yrs old as opposed to her sis who is post tx x 2. but.....cf is cf. and can turn on you in a heartbeat. Kari has been so sick and has gone through SO MUCH, and is still here! and those like Frankie are gone.................just like that. It is an evil and CUNNING disease, do not UNDERESTIMATE it even for ONE split second.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
You are indeed very very lucky hon, and YES my daughter Holli has a VERY mild case at 21 yrs old as opposed to her sis who is post tx x 2. but.....cf is cf. and can turn on you in a heartbeat. Kari has been so sick and has gone through SO MUCH, and is still here! and those like Frankie are gone.................just like that. It is an evil and CUNNING disease, do not UNDERESTIMATE it even for ONE split second.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
You are indeed very very lucky hon, and YES my daughter Holli has a VERY mild case at 21 yrs old as opposed to her sis who is post tx x 2. but.....cf is cf. and can turn on you in a heartbeat. Kari has been so sick and has gone through SO MUCH, and is still here! and those like Frankie are gone.................just like that. It is an evil and CUNNING disease, do not UNDERESTIMATE it even for ONE split second.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
You are indeed very very lucky hon, and YES my daughter Holli has a VERY mild case at 21 yrs old as opposed to her sis who is post tx x 2. but.....cf is cf. and can turn on you in a heartbeat. Kari has been so sick and has gone through SO MUCH, and is still here! and those like Frankie are gone.................just like that. It is an evil and CUNNING disease, do not UNDERESTIMATE it even for ONE split second.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
You are indeed very very lucky hon, and YES my daughter Holli has a VERY mild case at 21 yrs old as opposed to her sis who is post tx x 2. but.....cf is cf. and can turn on you in a heartbeat. Kari has been so sick and has gone through SO MUCH, and is still here! and those like Frankie are gone.................just like that. It is an evil and CUNNING disease, do not UNDERESTIMATE it even for ONE split second.


peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
6

65rosessamurai

Guest
Hi Imattaway,
I would consider myself within the same bracket as you...at least until recently...
I went on for 42 years without the need of anything more than enzymes, and had only been hospitalized for a lung problem at the age of 18.
I was diagnosed at about the age of 7, but had many gastrointestinal issues before and after that. I was hospitalized two times for nasal polyps, but I still have my sense of smell, though sometimes I think it comes-and-goes.
I never did chest PT, and had never done nebulizers until recently, meaning the past few days. My PFT's had dropped, but only from the low 90's to the high 80's.
Perhaps I had been fortunate with my lungs, and was also not afraid to get excercise, even something as rough as getting in the martial arts (played Ice Hockey in my younger years).
My only dillema was how I looked among other CF'rs, when I went to CF camp. Some of them actually would ask if I REALLY had CF, because I even had proper weight gain, despite my stomach problems.
I guess we are among the lucky ones, but since finding this site, there were many unknown things that I thought would help me prolong my health even more, and I hope you also find many things to prolong your health as well.
Cheers!
 
6

65rosessamurai

Guest
Hi Imattaway,
I would consider myself within the same bracket as you...at least until recently...
I went on for 42 years without the need of anything more than enzymes, and had only been hospitalized for a lung problem at the age of 18.
I was diagnosed at about the age of 7, but had many gastrointestinal issues before and after that. I was hospitalized two times for nasal polyps, but I still have my sense of smell, though sometimes I think it comes-and-goes.
I never did chest PT, and had never done nebulizers until recently, meaning the past few days. My PFT's had dropped, but only from the low 90's to the high 80's.
Perhaps I had been fortunate with my lungs, and was also not afraid to get excercise, even something as rough as getting in the martial arts (played Ice Hockey in my younger years).
My only dillema was how I looked among other CF'rs, when I went to CF camp. Some of them actually would ask if I REALLY had CF, because I even had proper weight gain, despite my stomach problems.
I guess we are among the lucky ones, but since finding this site, there were many unknown things that I thought would help me prolong my health even more, and I hope you also find many things to prolong your health as well.
Cheers!
 
6

65rosessamurai

Guest
Hi Imattaway,
I would consider myself within the same bracket as you...at least until recently...
I went on for 42 years without the need of anything more than enzymes, and had only been hospitalized for a lung problem at the age of 18.
I was diagnosed at about the age of 7, but had many gastrointestinal issues before and after that. I was hospitalized two times for nasal polyps, but I still have my sense of smell, though sometimes I think it comes-and-goes.
I never did chest PT, and had never done nebulizers until recently, meaning the past few days. My PFT's had dropped, but only from the low 90's to the high 80's.
Perhaps I had been fortunate with my lungs, and was also not afraid to get excercise, even something as rough as getting in the martial arts (played Ice Hockey in my younger years).
My only dillema was how I looked among other CF'rs, when I went to CF camp. Some of them actually would ask if I REALLY had CF, because I even had proper weight gain, despite my stomach problems.
I guess we are among the lucky ones, but since finding this site, there were many unknown things that I thought would help me prolong my health even more, and I hope you also find many things to prolong your health as well.
Cheers!
 
6

65rosessamurai

Guest
Hi Imattaway,
I would consider myself within the same bracket as you...at least until recently...
I went on for 42 years without the need of anything more than enzymes, and had only been hospitalized for a lung problem at the age of 18.
I was diagnosed at about the age of 7, but had many gastrointestinal issues before and after that. I was hospitalized two times for nasal polyps, but I still have my sense of smell, though sometimes I think it comes-and-goes.
I never did chest PT, and had never done nebulizers until recently, meaning the past few days. My PFT's had dropped, but only from the low 90's to the high 80's.
Perhaps I had been fortunate with my lungs, and was also not afraid to get excercise, even something as rough as getting in the martial arts (played Ice Hockey in my younger years).
My only dillema was how I looked among other CF'rs, when I went to CF camp. Some of them actually would ask if I REALLY had CF, because I even had proper weight gain, despite my stomach problems.
I guess we are among the lucky ones, but since finding this site, there were many unknown things that I thought would help me prolong my health even more, and I hope you also find many things to prolong your health as well.
Cheers!
 
6

65rosessamurai

Guest
Hi Imattaway,
I would consider myself within the same bracket as you...at least until recently...
I went on for 42 years without the need of anything more than enzymes, and had only been hospitalized for a lung problem at the age of 18.
I was diagnosed at about the age of 7, but had many gastrointestinal issues before and after that. I was hospitalized two times for nasal polyps, but I still have my sense of smell, though sometimes I think it comes-and-goes.
I never did chest PT, and had never done nebulizers until recently, meaning the past few days. My PFT's had dropped, but only from the low 90's to the high 80's.
Perhaps I had been fortunate with my lungs, and was also not afraid to get excercise, even something as rough as getting in the martial arts (played Ice Hockey in my younger years).
My only dillema was how I looked among other CF'rs, when I went to CF camp. Some of them actually would ask if I REALLY had CF, because I even had proper weight gain, despite my stomach problems.
I guess we are among the lucky ones, but since finding this site, there were many unknown things that I thought would help me prolong my health even more, and I hope you also find many things to prolong your health as well.
Cheers!
 
6

65rosessamurai

Guest
Hi Imattaway,
I would consider myself within the same bracket as you...at least until recently...
I went on for 42 years without the need of anything more than enzymes, and had only been hospitalized for a lung problem at the age of 18.
I was diagnosed at about the age of 7, but had many gastrointestinal issues before and after that. I was hospitalized two times for nasal polyps, but I still have my sense of smell, though sometimes I think it comes-and-goes.
I never did chest PT, and had never done nebulizers until recently, meaning the past few days. My PFT's had dropped, but only from the low 90's to the high 80's.
Perhaps I had been fortunate with my lungs, and was also not afraid to get excercise, even something as rough as getting in the martial arts (played Ice Hockey in my younger years).
My only dillema was how I looked among other CF'rs, when I went to CF camp. Some of them actually would ask if I REALLY had CF, because I even had proper weight gain, despite my stomach problems.
I guess we are among the lucky ones, but since finding this site, there were many unknown things that I thought would help me prolong my health even more, and I hope you also find many things to prolong your health as well.
Cheers!
 
L

lightNlife

New member
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.
 
L

lightNlife

New member
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.
 
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