lung function rate of decline

J

jbrandonAW

New member
Anyone know the general rate of decline of lung function per year?

For those closer to the "average age of survivial" what was your lung function in your early 20's.

I am just thinking about the fact that if my lung function is 60% now, what will it be when I am 38. Will I live to 38? Would I likely have a transplant by then? (provided no major CF meds are found which I know isn't likely but ya know).

Just thought it would be an interesting topic.
 
J

jbrandonAW

New member
Anyone know the general rate of decline of lung function per year?

For those closer to the "average age of survivial" what was your lung function in your early 20's.

I am just thinking about the fact that if my lung function is 60% now, what will it be when I am 38. Will I live to 38? Would I likely have a transplant by then? (provided no major CF meds are found which I know isn't likely but ya know).

Just thought it would be an interesting topic.
 
J

jbrandonAW

New member
Anyone know the general rate of decline of lung function per year?
<br />
<br />For those closer to the "average age of survivial" what was your lung function in your early 20's.
<br />
<br />I am just thinking about the fact that if my lung function is 60% now, what will it be when I am 38. Will I live to 38? Would I likely have a transplant by then? (provided no major CF meds are found which I know isn't likely but ya know).
<br />
<br />Just thought it would be an interesting topic.
 
L

LouLou

New member
Hi Jessica, I'll be 32 this September. The average rate of decline of a cfer is 2% per year last I heard (from a doctor and on this site). Remember that even healthy people lose lung function each year. I don't know that %age though.

I became 100% compliant around 2000 at the age of 22. My FEV1 was around 68-70 then and now it is 65-67 so not much of a difference. I have more frequent infections requiring IV antibiotics though and my quality of life has declined. I DEFINITELY work harder to maintain that 67 now than I did then. If I hadn't contracted MRSA in my lungs in 2008 I think I would be where I was when I was 22 or better.

Averages, mean, and norm's can not and shall not predict your decline.

My hope is to start receiving 770 this Fall (through OLE to Ph. 3 participants) and to get my FEV1 up to 75 and maintain it for a very long time. I can not, nor can my doctor, predict that having a transplant is definitely in my future. Although if I creep into the 40s I will definitely start the evaluation process sooner than later.
 
L

LouLou

New member
Hi Jessica, I'll be 32 this September. The average rate of decline of a cfer is 2% per year last I heard (from a doctor and on this site). Remember that even healthy people lose lung function each year. I don't know that %age though.

I became 100% compliant around 2000 at the age of 22. My FEV1 was around 68-70 then and now it is 65-67 so not much of a difference. I have more frequent infections requiring IV antibiotics though and my quality of life has declined. I DEFINITELY work harder to maintain that 67 now than I did then. If I hadn't contracted MRSA in my lungs in 2008 I think I would be where I was when I was 22 or better.

Averages, mean, and norm's can not and shall not predict your decline.

My hope is to start receiving 770 this Fall (through OLE to Ph. 3 participants) and to get my FEV1 up to 75 and maintain it for a very long time. I can not, nor can my doctor, predict that having a transplant is definitely in my future. Although if I creep into the 40s I will definitely start the evaluation process sooner than later.
 
L

LouLou

New member
Hi Jessica, I'll be 32 this September. The average rate of decline of a cfer is 2% per year last I heard (from a doctor and on this site). Remember that even healthy people lose lung function each year. I don't know that %age though.
<br />
<br />I became 100% compliant around 2000 at the age of 22. My FEV1 was around 68-70 then and now it is 65-67 so not much of a difference. I have more frequent infections requiring IV antibiotics though and my quality of life has declined. I DEFINITELY work harder to maintain that 67 now than I did then. If I hadn't contracted MRSA in my lungs in 2008 I think I would be where I was when I was 22 or better.
<br />
<br />Averages, mean, and norm's can not and shall not predict your decline.
<br />
<br />My hope is to start receiving 770 this Fall (through OLE to Ph. 3 participants) and to get my FEV1 up to 75 and maintain it for a very long time. I can not, nor can my doctor, predict that having a transplant is definitely in my future. Although if I creep into the 40s I will definitely start the evaluation process sooner than later.
 
M

mamerth

New member
My lung function about 4 years ago was 99%. Now I am at 74%. (I will be 37 in 7 days). I was not compliant so that is the reason for the drastic fall. Now that I am older it is harder to raise my numbers... they like to fall again after I get them up.
 
M

mamerth

New member
My lung function about 4 years ago was 99%. Now I am at 74%. (I will be 37 in 7 days). I was not compliant so that is the reason for the drastic fall. Now that I am older it is harder to raise my numbers... they like to fall again after I get them up.
 
M

mamerth

New member
My lung function about 4 years ago was 99%. Now I am at 74%. (I will be 37 in 7 days). I was not compliant so that is the reason for the drastic fall. Now that I am older it is harder to raise my numbers... they like to fall again after I get them up.
 
S

static

New member
Age 11-17 = 99%
18 = 70%
19-20 = 33%
21-now = 57%

I probably have one of the more dratistic changes over the years. I guess my point is nobody really knows how long your lung function will last or what new medical break-throughs will occur. Compliance is definately key, and I would contribute alot of my younger health to being extremely active (swim team, soccer team, water polo team, practiced 1.5 hrs 5x a week for 9/12 months of the year). For the new mothers with kids with CF I would strongly recomend some sort of sports team for the children (even if they don't like it that much, at one point I HATED swimming but my parents still made me do it for my health). As far as adult life goes, it is really up to us.

I will be 23 in November.
 
S

static

New member
Age 11-17 = 99%
18 = 70%
19-20 = 33%
21-now = 57%

I probably have one of the more dratistic changes over the years. I guess my point is nobody really knows how long your lung function will last or what new medical break-throughs will occur. Compliance is definately key, and I would contribute alot of my younger health to being extremely active (swim team, soccer team, water polo team, practiced 1.5 hrs 5x a week for 9/12 months of the year). For the new mothers with kids with CF I would strongly recomend some sort of sports team for the children (even if they don't like it that much, at one point I HATED swimming but my parents still made me do it for my health). As far as adult life goes, it is really up to us.

I will be 23 in November.
 
S

static

New member
Age 11-17 = 99%
<br /> 18 = 70%
<br /> 19-20 = 33%
<br /> 21-now = 57%
<br />
<br />I probably have one of the more dratistic changes over the years. I guess my point is nobody really knows how long your lung function will last or what new medical break-throughs will occur. Compliance is definately key, and I would contribute alot of my younger health to being extremely active (swim team, soccer team, water polo team, practiced 1.5 hrs 5x a week for 9/12 months of the year). For the new mothers with kids with CF I would strongly recomend some sort of sports team for the children (even if they don't like it that much, at one point I HATED swimming but my parents still made me do it for my health). As far as adult life goes, it is really up to us.
<br />
<br />I will be 23 in November.
 
K

Keepercjr

Guest
Jessica

There are statistics and averages but each individual is unique. My lung functions have been in the mid to upper 60s for many years now - at least 6+. So I declined to my early 20s and then stopped I guess? But like LouLou said, I have to work harder to maintain. When I was younger I didn't do any treatments and did just fine. Now I have to keep up or I start to feel not so great. Not sick but not great. I wouldn't say my quality of life has declined though, I just have to put a little more effort into the CF side of things.

I fully intend to live to 38 and way way beyond <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Keepercjr

Guest
Jessica

There are statistics and averages but each individual is unique. My lung functions have been in the mid to upper 60s for many years now - at least 6+. So I declined to my early 20s and then stopped I guess? But like LouLou said, I have to work harder to maintain. When I was younger I didn't do any treatments and did just fine. Now I have to keep up or I start to feel not so great. Not sick but not great. I wouldn't say my quality of life has declined though, I just have to put a little more effort into the CF side of things.

I fully intend to live to 38 and way way beyond <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Keepercjr

Guest
Jessica
<br />
<br />There are statistics and averages but each individual is unique. My lung functions have been in the mid to upper 60s for many years now - at least 6+. So I declined to my early 20s and then stopped I guess? But like LouLou said, I have to work harder to maintain. When I was younger I didn't do any treatments and did just fine. Now I have to keep up or I start to feel not so great. Not sick but not great. I wouldn't say my quality of life has declined though, I just have to put a little more effort into the CF side of things.
<br />
<br />I fully intend to live to 38 and way way beyond <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
P

petersymons

Guest
Hi Stataic my name is Peter symons. My sons fev's have plummeted after a bad infuction to the 30's have been there for 8 weeks hes back in hospital now. Just reading your post that you were in low 30's for a cople of years and now back in low 30's how were you able to retrieve your lung function. regards peter
 
P

petersymons

Guest
Hi Stataic my name is Peter symons. My sons fev's have plummeted after a bad infuction to the 30's have been there for 8 weeks hes back in hospital now. Just reading your post that you were in low 30's for a cople of years and now back in low 30's how were you able to retrieve your lung function. regards peter
 
You must log in or register to reply here.
Top