COURTNEY SAID SOMETHING TO ME

[Seana30]

Courtney's PFTs have always been WONDERFUL. Never any major lung issues to date.

Yesterday she looked at me and calmy said "mom, I think my lungs are starting to be affected by the CF". Of course it took me back and it took me a few seconds to gather myself and say "why do you think that"?

She said...."last year I was able to run cross country no problems, and this year I am really struggling to run at all".

So......my question is........at what point did the CFers here realize that their lungs were starting to have problems? Did it seem to come on quickly or did you notice it gradually?

Thanks in advance for any words of wisdom and advice!!

Seana

 

[Seana30]

Courtney's PFTs have always been WONDERFUL. Never any major lung issues to date.

Yesterday she looked at me and calmy said "mom, I think my lungs are starting to be affected by the CF". Of course it took me back and it took me a few seconds to gather myself and say "why do you think that"?

She said...."last year I was able to run cross country no problems, and this year I am really struggling to run at all".

So......my question is........at what point did the CFers here realize that their lungs were starting to have problems? Did it seem to come on quickly or did you notice it gradually?

Thanks in advance for any words of wisdom and advice!!

Seana

 

[Seana30]

Courtney's PFTs have always been WONDERFUL. Never any major lung issues to date.

Yesterday she looked at me and calmy said "mom, I think my lungs are starting to be affected by the CF". Of course it took me back and it took me a few seconds to gather myself and say "why do you think that"?

She said...."last year I was able to run cross country no problems, and this year I am really struggling to run at all".

So......my question is........at what point did the CFers here realize that their lungs were starting to have problems? Did it seem to come on quickly or did you notice it gradually?

Thanks in advance for any words of wisdom and advice!!

Seana

 

[Allie]

I think the grand majority of CFers are in touch with thier bodies enough to recognize something like that. Ry always knew if his PFts were starting to go down, he could just tell. So that's not unusual.

For Ry, noticing it was gradual. It slipped a little bit, by little bit, and he, like Courtney, found things gradually more difficult. However, Ry never remembered CF NOT affecting his lungs, so I can't answer as to that. He never could have ran XC.

Hope this helped, any questions, clarifications, just ask.

 

[Allie]

I think the grand majority of CFers are in touch with thier bodies enough to recognize something like that. Ry always knew if his PFts were starting to go down, he could just tell. So that's not unusual.

For Ry, noticing it was gradual. It slipped a little bit, by little bit, and he, like Courtney, found things gradually more difficult. However, Ry never remembered CF NOT affecting his lungs, so I can't answer as to that. He never could have ran XC.

Hope this helped, any questions, clarifications, just ask.

 

[Allie]

I think the grand majority of CFers are in touch with thier bodies enough to recognize something like that. Ry always knew if his PFts were starting to go down, he could just tell. So that's not unusual.

For Ry, noticing it was gradual. It slipped a little bit, by little bit, and he, like Courtney, found things gradually more difficult. However, Ry never remembered CF NOT affecting his lungs, so I can't answer as to that. He never could have ran XC.

Hope this helped, any questions, clarifications, just ask.

 

[Bumblebee]

I was always healthy when i was young, and never kept an eye on my body, or thought about what i could or could not do. I don't remember a time CF didn't affect my lungs i guess as i remember after my first set of IV's, when i was 8, feeling like i could fly....so i must have been feeling the affects before them. At high school i rarely did sports to fully gauge what was going on. However i was always at the back of the xcountry circuit walk-scuffle-jog 2 seconds-cough-walk-scuffle etc. I guess people thought i was lazy and i did too (i never thought CF effected me EVER, unless i let it go too far and ended up on IVs - by then i'd be crawling!). I guess i was aware of it at the back of my mind throughout my teens though. When i went to uni, that's when i really started to feel things more noticably (though i did notice things when i was younger, the slope was steeper and more slippery at uni)


However i now have a more better idea of my body and the things it likes to tell me. The other day i went swimming for the first time in ages and was SHOCKED at the comparison (i hadn't been swimming in a year...bad me!) - and i was supposedly feeling healthy at the time. It's definately been a gradual thing - my PFT's through my teens were always probably in the 90's (i don't remember, i only ever got numbers, not percentages and never bothered to pay attention to them anyway). MY PFT today was at 63%, it's a new level that i don't notice (unless i swim of course), one day i'll notice i'm permantly round 50% etc...Gradual all the way for me, it's not till i do something i haven't done in a while that i notice.

xxxx

 

[Bumblebee]

I was always healthy when i was young, and never kept an eye on my body, or thought about what i could or could not do. I don't remember a time CF didn't affect my lungs i guess as i remember after my first set of IV's, when i was 8, feeling like i could fly....so i must have been feeling the affects before them. At high school i rarely did sports to fully gauge what was going on. However i was always at the back of the xcountry circuit walk-scuffle-jog 2 seconds-cough-walk-scuffle etc. I guess people thought i was lazy and i did too (i never thought CF effected me EVER, unless i let it go too far and ended up on IVs - by then i'd be crawling!). I guess i was aware of it at the back of my mind throughout my teens though. When i went to uni, that's when i really started to feel things more noticably (though i did notice things when i was younger, the slope was steeper and more slippery at uni)


However i now have a more better idea of my body and the things it likes to tell me. The other day i went swimming for the first time in ages and was SHOCKED at the comparison (i hadn't been swimming in a year...bad me!) - and i was supposedly feeling healthy at the time. It's definately been a gradual thing - my PFT's through my teens were always probably in the 90's (i don't remember, i only ever got numbers, not percentages and never bothered to pay attention to them anyway). MY PFT today was at 63%, it's a new level that i don't notice (unless i swim of course), one day i'll notice i'm permantly round 50% etc...Gradual all the way for me, it's not till i do something i haven't done in a while that i notice.

xxxx

 

[Bumblebee]

I was always healthy when i was young, and never kept an eye on my body, or thought about what i could or could not do. I don't remember a time CF didn't affect my lungs i guess as i remember after my first set of IV's, when i was 8, feeling like i could fly....so i must have been feeling the affects before them. At high school i rarely did sports to fully gauge what was going on. However i was always at the back of the xcountry circuit walk-scuffle-jog 2 seconds-cough-walk-scuffle etc. I guess people thought i was lazy and i did too (i never thought CF effected me EVER, unless i let it go too far and ended up on IVs - by then i'd be crawling!). I guess i was aware of it at the back of my mind throughout my teens though. When i went to uni, that's when i really started to feel things more noticably (though i did notice things when i was younger, the slope was steeper and more slippery at uni)


However i now have a more better idea of my body and the things it likes to tell me. The other day i went swimming for the first time in ages and was SHOCKED at the comparison (i hadn't been swimming in a year...bad me!) - and i was supposedly feeling healthy at the time. It's definately been a gradual thing - my PFT's through my teens were always probably in the 90's (i don't remember, i only ever got numbers, not percentages and never bothered to pay attention to them anyway). MY PFT today was at 63%, it's a new level that i don't notice (unless i swim of course), one day i'll notice i'm permantly round 50% etc...Gradual all the way for me, it's not till i do something i haven't done in a while that i notice.

xxxx

 

[Brad]

Seana30

Every person is effected differently
what is normal for me maybe low function for
another Person with Cf. There can be many reasons
why it is harder this year for Courtney to run, weather
a cold or infection cropping up.
I know a simple thing like not keeping my water
intake up can affect my lung function.

To anwser Your question, for me the change in
lung function happened gradually over a number of years.

 

[Brad]

Seana30

Every person is effected differently
what is normal for me maybe low function for
another Person with Cf. There can be many reasons
why it is harder this year for Courtney to run, weather
a cold or infection cropping up.
I know a simple thing like not keeping my water
intake up can affect my lung function.

To anwser Your question, for me the change in
lung function happened gradually over a number of years.

 

[Brad]

Seana30

Every person is effected differently
what is normal for me maybe low function for
another Person with Cf. There can be many reasons
why it is harder this year for Courtney to run, weather
a cold or infection cropping up.
I know a simple thing like not keeping my water
intake up can affect my lung function.

To anwser Your question, for me the change in
lung function happened gradually over a number of years.

 

[djotroy17]

I am optomistic, too optomistic I think, CF has never held me back from anything and I refuse to let it, however recently ive had a small cough and run out of breath playing hockey, I am just going to make sure I do my daily meds and start jogging daily. If that doesnt show improvements I will be goin to a dr to check stuff out. But to answer your question, it very very slowly catches up on you You can't notice that your getting worse because its so slow...you dont really notice your lungs are getting worse until a few months go by and you dont notice improvments because we have on days and off days, sometimes I will wake up and feel I can run a mile, others I dont wana get out of the house. It's when you feel crummy for a long time that you begin to notice something is up.

 

[djotroy17]

I am optomistic, too optomistic I think, CF has never held me back from anything and I refuse to let it, however recently ive had a small cough and run out of breath playing hockey, I am just going to make sure I do my daily meds and start jogging daily. If that doesnt show improvements I will be goin to a dr to check stuff out. But to answer your question, it very very slowly catches up on you You can't notice that your getting worse because its so slow...you dont really notice your lungs are getting worse until a few months go by and you dont notice improvments because we have on days and off days, sometimes I will wake up and feel I can run a mile, others I dont wana get out of the house. It's when you feel crummy for a long time that you begin to notice something is up.

 

[djotroy17]

I am optomistic, too optomistic I think, CF has never held me back from anything and I refuse to let it, however recently ive had a small cough and run out of breath playing hockey, I am just going to make sure I do my daily meds and start jogging daily. If that doesnt show improvements I will be goin to a dr to check stuff out. But to answer your question, it very very slowly catches up on you You can't notice that your getting worse because its so slow...you dont really notice your lungs are getting worse until a few months go by and you dont notice improvments because we have on days and off days, sometimes I will wake up and feel I can run a mile, others I dont wana get out of the house. It's when you feel crummy for a long time that you begin to notice something is up.

 

[Jade]

It hit me like a brick within a few weeks. I guess it had been building for a long time, but the change in lung function was quick & intense due to <u>pnuemonia</u>. I went from 40 mins on a treadmill to not being able to even stay awake. Sleeping 16+ hours a day, oxygen levels were awful, and checking myself out of the hospital less than 2 days later didn't help.....I hated hospitals. I've never really recovered from the damage it did.

 

[Jade]

It hit me like a brick within a few weeks. I guess it had been building for a long time, but the change in lung function was quick & intense due to <u>pnuemonia</u>. I went from 40 mins on a treadmill to not being able to even stay awake. Sleeping 16+ hours a day, oxygen levels were awful, and checking myself out of the hospital less than 2 days later didn't help.....I hated hospitals. I've never really recovered from the damage it did.

 

[Jade]

It hit me like a brick within a few weeks. I guess it had been building for a long time, but the change in lung function was quick & intense due to <u>pnuemonia</u>. I went from 40 mins on a treadmill to not being able to even stay awake. Sleeping 16+ hours a day, oxygen levels were awful, and checking myself out of the hospital less than 2 days later didn't help.....I hated hospitals. I've never really recovered from the damage it did.

 

[djotroy17]

I know where your coming from with hospitals, I am scared of them myself and have a needle phobia from my only hospital visit when I was 5...I got some doctors/nurses that were in training and they stuck me 12 times with the IV and could never find the vien, they finally gave up and got a real doctor who found the vien first try, but to this day I absolutley hate needles and do w/e I can to avoid getting 1.

 

[djotroy17]

I know where your coming from with hospitals, I am scared of them myself and have a needle phobia from my only hospital visit when I was 5...I got some doctors/nurses that were in training and they stuck me 12 times with the IV and could never find the vien, they finally gave up and got a real doctor who found the vien first try, but to this day I absolutley hate needles and do w/e I can to avoid getting 1.