anyone know what happened

Futant3 · Jul 7, 2007

I would say that the biggest drop in my PFT's was caused by two major issues. I had a job at a craft store that put me in contact with a lot of allergens. Dust, glitter, paints, wood, etc. During this job I averaged 1 hospital stay a year, I know that's not many but it was a dramatic increase for me. In comparison I haven't been in the hospital for the last 3 years since I moved to an office environment.

The second is that I had not been nearly as compliant with treatment as I should have been during my late teens. Non-compliance adds up and I think the job finally pushed me over the edge.

Futant3 · Jul 7, 2007

I would say that the biggest drop in my PFT's was caused by two major issues. I had a job at a craft store that put me in contact with a lot of allergens. Dust, glitter, paints, wood, etc. During this job I averaged 1 hospital stay a year, I know that's not many but it was a dramatic increase for me. In comparison I haven't been in the hospital for the last 3 years since I moved to an office environment.

The second is that I had not been nearly as compliant with treatment as I should have been during my late teens. Non-compliance adds up and I think the job finally pushed me over the edge.

lightNlife · Jul 7, 2007

Futant3 makes an excellent point about the correlation between compliance and lung health.

Lung function naturally decreases with age (even in people w/o CF),. The longer we CFers can hold out by being proactive and compliant, the better. Of course, there are times when we are blindsided by a nasty bug that is too powerful.

For me, that bug is cepacia. It's futile to spend energy trying to figure out where I got it. I first cultured it around 10 years ago. I have experienced an ongoing loss of approximately 10dL per year since. I have to fight exceptionally hard to keep it from deteriorating any faster than that. I regain small amounts here and there, but it's sort of a two steps forward, one step back phenomenon. With each subsequent infection, it's much harder for me to rebound. I'm currently in one of the toughest fights for lung power than I've ever been in. In December I went code blue during an exacerbation, and it has taken me all these months (7 now) to try to get back up to being stable.

Each infection takes its toll. Metaphorically speaking, each preventive treatment is a wise investment that puts a few more quarters in your coin purse to help pay that toll when you go through the booth.

My drop in

lightNlife · Jul 7, 2007

Futant3 makes an excellent point about the correlation between compliance and lung health.

Lung function naturally decreases with age (even in people w/o CF),. The longer we CFers can hold out by being proactive and compliant, the better. Of course, there are times when we are blindsided by a nasty bug that is too powerful.

For me, that bug is cepacia. It's futile to spend energy trying to figure out where I got it. I first cultured it around 10 years ago. I have experienced an ongoing loss of approximately 10dL per year since. I have to fight exceptionally hard to keep it from deteriorating any faster than that. I regain small amounts here and there, but it's sort of a two steps forward, one step back phenomenon. With each subsequent infection, it's much harder for me to rebound. I'm currently in one of the toughest fights for lung power than I've ever been in. In December I went code blue during an exacerbation, and it has taken me all these months (7 now) to try to get back up to being stable.

Each infection takes its toll. Metaphorically speaking, each preventive treatment is a wise investment that puts a few more quarters in your coin purse to help pay that toll when you go through the booth.

My drop in

lightNlife · Jul 7, 2007

Futant3 makes an excellent point about the correlation between compliance and lung health.

Lung function naturally decreases with age (even in people w/o CF),. The longer we CFers can hold out by being proactive and compliant, the better. Of course, there are times when we are blindsided by a nasty bug that is too powerful.

For me, that bug is cepacia. It's futile to spend energy trying to figure out where I got it. I first cultured it around 10 years ago. I have experienced an ongoing loss of approximately 10dL per year since. I have to fight exceptionally hard to keep it from deteriorating any faster than that. I regain small amounts here and there, but it's sort of a two steps forward, one step back phenomenon. With each subsequent infection, it's much harder for me to rebound. I'm currently in one of the toughest fights for lung power than I've ever been in. In December I went code blue during an exacerbation, and it has taken me all these months (7 now) to try to get back up to being stable.

Each infection takes its toll. Metaphorically speaking, each preventive treatment is a wise investment that puts a few more quarters in your coin purse to help pay that toll when you go through the booth.

My drop in

lightNlife · Jul 7, 2007

Futant3 makes an excellent point about the correlation between compliance and lung health.

Lung function naturally decreases with age (even in people w/o CF),. The longer we CFers can hold out by being proactive and compliant, the better. Of course, there are times when we are blindsided by a nasty bug that is too powerful.

For me, that bug is cepacia. It's futile to spend energy trying to figure out where I got it. I first cultured it around 10 years ago. I have experienced an ongoing loss of approximately 10dL per year since. I have to fight exceptionally hard to keep it from deteriorating any faster than that. I regain small amounts here and there, but it's sort of a two steps forward, one step back phenomenon. With each subsequent infection, it's much harder for me to rebound. I'm currently in one of the toughest fights for lung power than I've ever been in. In December I went code blue during an exacerbation, and it has taken me all these months (7 now) to try to get back up to being stable.

Each infection takes its toll. Metaphorically speaking, each preventive treatment is a wise investment that puts a few more quarters in your coin purse to help pay that toll when you go through the booth.

My drop in

lightNlife · Jul 7, 2007

Futant3 makes an excellent point about the correlation between compliance and lung health.

Lung function naturally decreases with age (even in people w/o CF),. The longer we CFers can hold out by being proactive and compliant, the better. Of course, there are times when we are blindsided by a nasty bug that is too powerful.

For me, that bug is cepacia. It's futile to spend energy trying to figure out where I got it. I first cultured it around 10 years ago. I have experienced an ongoing loss of approximately 10dL per year since. I have to fight exceptionally hard to keep it from deteriorating any faster than that. I regain small amounts here and there, but it's sort of a two steps forward, one step back phenomenon. With each subsequent infection, it's much harder for me to rebound. I'm currently in one of the toughest fights for lung power than I've ever been in. In December I went code blue during an exacerbation, and it has taken me all these months (7 now) to try to get back up to being stable.

Each infection takes its toll. Metaphorically speaking, each preventive treatment is a wise investment that puts a few more quarters in your coin purse to help pay that toll when you go through the booth.

My drop in

lightNlife · Jul 7, 2007

Futant3 makes an excellent point about the correlation between compliance and lung health.

Lung function naturally decreases with age (even in people w/o CF),. The longer we CFers can hold out by being proactive and compliant, the better. Of course, there are times when we are blindsided by a nasty bug that is too powerful.

For me, that bug is cepacia. It's futile to spend energy trying to figure out where I got it. I first cultured it around 10 years ago. I have experienced an ongoing loss of approximately 10dL per year since. I have to fight exceptionally hard to keep it from deteriorating any faster than that. I regain small amounts here and there, but it's sort of a two steps forward, one step back phenomenon. With each subsequent infection, it's much harder for me to rebound. I'm currently in one of the toughest fights for lung power than I've ever been in. In December I went code blue during an exacerbation, and it has taken me all these months (7 now) to try to get back up to being stable.

Each infection takes its toll. Metaphorically speaking, each preventive treatment is a wise investment that puts a few more quarters in your coin purse to help pay that toll when you go through the booth.

My drop in

fr3ak · Jul 7, 2007

When I was 17 my dr took me off all my CF medication..

why you ask?

Because I was "tooo" good *rolls eyes*

I was on inhaled gentimicin from my diagnosis of 6 months old until 17 (might I add my medication was done religiously, when I was first diagnosed I was only given 3 months to live....)when I was stripped off all my treatments and the major reason why I was taken off them was the Dr didn't know how to make up the proplyene glycol (sp?) which was used with the gentimicin. at that time... *sigh* back then my lung function sat pretty on well over 100% predicted...

I went to my CF specialist begging them to put me back onto my normal meds....who turned around and took me off everything else stating again that I was too well, and that was what they were trying with the CFs with minimum lung impact...(maybe it was to see how long you'd live for ... who knows)

needless to say within 6 months of fighting and screaming to go back onto treatment I lost over 60% of my lung capacity to which I never regained...

I was told prior to this that my chances of getting well into my 40-50 with minimum impact was extremely high... but age 28 I got my lung transplant after living between 20-30% capacity for roughly 8 years....at the time of transplant my capacity was roughly 10-15%....

Not that anyone ever listens but I am a perfect example of what happens when you don't do treatments.... (but in my case it wasn't by choice....)

fr3ak · Jul 7, 2007

When I was 17 my dr took me off all my CF medication..

why you ask?

Because I was "tooo" good *rolls eyes*

I was on inhaled gentimicin from my diagnosis of 6 months old until 17 (might I add my medication was done religiously, when I was first diagnosed I was only given 3 months to live....)when I was stripped off all my treatments and the major reason why I was taken off them was the Dr didn't know how to make up the proplyene glycol (sp?) which was used with the gentimicin. at that time... *sigh* back then my lung function sat pretty on well over 100% predicted...

I went to my CF specialist begging them to put me back onto my normal meds....who turned around and took me off everything else stating again that I was too well, and that was what they were trying with the CFs with minimum lung impact...(maybe it was to see how long you'd live for ... who knows)

needless to say within 6 months of fighting and screaming to go back onto treatment I lost over 60% of my lung capacity to which I never regained...

I was told prior to this that my chances of getting well into my 40-50 with minimum impact was extremely high... but age 28 I got my lung transplant after living between 20-30% capacity for roughly 8 years....at the time of transplant my capacity was roughly 10-15%....

Not that anyone ever listens but I am a perfect example of what happens when you don't do treatments.... (but in my case it wasn't by choice....)

fr3ak · Jul 7, 2007

When I was 17 my dr took me off all my CF medication..

why you ask?

Because I was "tooo" good *rolls eyes*

I was on inhaled gentimicin from my diagnosis of 6 months old until 17 (might I add my medication was done religiously, when I was first diagnosed I was only given 3 months to live....)when I was stripped off all my treatments and the major reason why I was taken off them was the Dr didn't know how to make up the proplyene glycol (sp?) which was used with the gentimicin. at that time... *sigh* back then my lung function sat pretty on well over 100% predicted...

I went to my CF specialist begging them to put me back onto my normal meds....who turned around and took me off everything else stating again that I was too well, and that was what they were trying with the CFs with minimum lung impact...(maybe it was to see how long you'd live for ... who knows)

needless to say within 6 months of fighting and screaming to go back onto treatment I lost over 60% of my lung capacity to which I never regained...

I was told prior to this that my chances of getting well into my 40-50 with minimum impact was extremely high... but age 28 I got my lung transplant after living between 20-30% capacity for roughly 8 years....at the time of transplant my capacity was roughly 10-15%....

Not that anyone ever listens but I am a perfect example of what happens when you don't do treatments.... (but in my case it wasn't by choice....)

fr3ak · Jul 7, 2007

When I was 17 my dr took me off all my CF medication..

why you ask?

Because I was "tooo" good *rolls eyes*

I was on inhaled gentimicin from my diagnosis of 6 months old until 17 (might I add my medication was done religiously, when I was first diagnosed I was only given 3 months to live....)when I was stripped off all my treatments and the major reason why I was taken off them was the Dr didn't know how to make up the proplyene glycol (sp?) which was used with the gentimicin. at that time... *sigh* back then my lung function sat pretty on well over 100% predicted...

I went to my CF specialist begging them to put me back onto my normal meds....who turned around and took me off everything else stating again that I was too well, and that was what they were trying with the CFs with minimum lung impact...(maybe it was to see how long you'd live for ... who knows)

needless to say within 6 months of fighting and screaming to go back onto treatment I lost over 60% of my lung capacity to which I never regained...

I was told prior to this that my chances of getting well into my 40-50 with minimum impact was extremely high... but age 28 I got my lung transplant after living between 20-30% capacity for roughly 8 years....at the time of transplant my capacity was roughly 10-15%....

Not that anyone ever listens but I am a perfect example of what happens when you don't do treatments.... (but in my case it wasn't by choice....)

fr3ak · Jul 7, 2007

When I was 17 my dr took me off all my CF medication..

why you ask?

Because I was "tooo" good *rolls eyes*

I was on inhaled gentimicin from my diagnosis of 6 months old until 17 (might I add my medication was done religiously, when I was first diagnosed I was only given 3 months to live....)when I was stripped off all my treatments and the major reason why I was taken off them was the Dr didn't know how to make up the proplyene glycol (sp?) which was used with the gentimicin. at that time... *sigh* back then my lung function sat pretty on well over 100% predicted...

I went to my CF specialist begging them to put me back onto my normal meds....who turned around and took me off everything else stating again that I was too well, and that was what they were trying with the CFs with minimum lung impact...(maybe it was to see how long you'd live for ... who knows)

needless to say within 6 months of fighting and screaming to go back onto treatment I lost over 60% of my lung capacity to which I never regained...

I was told prior to this that my chances of getting well into my 40-50 with minimum impact was extremely high... but age 28 I got my lung transplant after living between 20-30% capacity for roughly 8 years....at the time of transplant my capacity was roughly 10-15%....

Not that anyone ever listens but I am a perfect example of what happens when you don't do treatments.... (but in my case it wasn't by choice....)

fr3ak · Jul 7, 2007

When I was 17 my dr took me off all my CF medication..

why you ask?

Because I was "tooo" good *rolls eyes*

I was on inhaled gentimicin from my diagnosis of 6 months old until 17 (might I add my medication was done religiously, when I was first diagnosed I was only given 3 months to live....)when I was stripped off all my treatments and the major reason why I was taken off them was the Dr didn't know how to make up the proplyene glycol (sp?) which was used with the gentimicin. at that time... *sigh* back then my lung function sat pretty on well over 100% predicted...

I went to my CF specialist begging them to put me back onto my normal meds....who turned around and took me off everything else stating again that I was too well, and that was what they were trying with the CFs with minimum lung impact...(maybe it was to see how long you'd live for ... who knows)

needless to say within 6 months of fighting and screaming to go back onto treatment I lost over 60% of my lung capacity to which I never regained...

I was told prior to this that my chances of getting well into my 40-50 with minimum impact was extremely high... but age 28 I got my lung transplant after living between 20-30% capacity for roughly 8 years....at the time of transplant my capacity was roughly 10-15%....

Not that anyone ever listens but I am a perfect example of what happens when you don't do treatments.... (but in my case it wasn't by choice....)

douglaslang85 · Jul 7, 2007