What does it feel like?

[ReneeP]

I hope this isn't seen as a morbid or inappropriate question. I only ask out of sincere curiousity as to what the future may hold for my daughters and I have no one else to ask.

What does it feel like to have different levels of lung function? I mean, for those who have had different levels, such as you've gone from 100% to 90% to 80%, etc... when do you really notice the difference? And when you're under 50%, how bad is that on a daily basis?

I feel like I'm being morbid here, and if my question offends anyone, please forgive me. I wonder things like this because it's something my two daughters are going to go through and I will not know what it's like for them but I want to have as much understanding as I can. I have asthma and there are times when I have a cold or something and I feel like I just can't get enough air. I have to take shallow, quick breathes. I always wonder if that's what the girls will feel like.

I guess the reason I am asking now is because I talked to a friend of mine from high school the other day. I haven't seen or talked to her in years, but she also has two daughters with CF. We live 1500 miles apart and unfortunately haven't kept in touch like we would like to have. But her youngest daughter (11) is being evaluated for a transplant and has lung function of 24%. That broke my heart for her and I truely didn't know what to say. I almost feel guilty that my 11 year old's lung function is 121% Both her girls have always been much more severe and have never been able to live "normal" lives. They've never been able to stay in school for any amount of time and spend much of their time in the hospital. I don't know what causes the severity of disease to vary so much (her girls have double Delta F508, same as mine). But anyway, it really got me to thinking about what it must be like. She said her daughter is unable to walk from the car to the house without being breathless. I lay in bed at night and wonder what life is like for her little girl. She is really having a hard time with the concept of transplant (they first mentioned it to her when her daughter was 9 but she refused at the time). I guess at some point you have to decide whether her quality of life is such that it is now worth the risk to do the transplant. I think that's where she is at. Maybe that's what made me wonder what it's like to have very low lung function. I just want to understand this damn disease better since we have to live with it. I want to know what life will be like for my daughters.

Sorry for rambling there... I just want to explain why I'm asking so maybe I won't look so insensitive.

 

[ReneeP]

I hope this isn't seen as a morbid or inappropriate question. I only ask out of sincere curiousity as to what the future may hold for my daughters and I have no one else to ask.

What does it feel like to have different levels of lung function? I mean, for those who have had different levels, such as you've gone from 100% to 90% to 80%, etc... when do you really notice the difference? And when you're under 50%, how bad is that on a daily basis?

I feel like I'm being morbid here, and if my question offends anyone, please forgive me. I wonder things like this because it's something my two daughters are going to go through and I will not know what it's like for them but I want to have as much understanding as I can. I have asthma and there are times when I have a cold or something and I feel like I just can't get enough air. I have to take shallow, quick breathes. I always wonder if that's what the girls will feel like.

I guess the reason I am asking now is because I talked to a friend of mine from high school the other day. I haven't seen or talked to her in years, but she also has two daughters with CF. We live 1500 miles apart and unfortunately haven't kept in touch like we would like to have. But her youngest daughter (11) is being evaluated for a transplant and has lung function of 24%. That broke my heart for her and I truely didn't know what to say. I almost feel guilty that my 11 year old's lung function is 121% Both her girls have always been much more severe and have never been able to live "normal" lives. They've never been able to stay in school for any amount of time and spend much of their time in the hospital. I don't know what causes the severity of disease to vary so much (her girls have double Delta F508, same as mine). But anyway, it really got me to thinking about what it must be like. She said her daughter is unable to walk from the car to the house without being breathless. I lay in bed at night and wonder what life is like for her little girl. She is really having a hard time with the concept of transplant (they first mentioned it to her when her daughter was 9 but she refused at the time). I guess at some point you have to decide whether her quality of life is such that it is now worth the risk to do the transplant. I think that's where she is at. Maybe that's what made me wonder what it's like to have very low lung function. I just want to understand this damn disease better since we have to live with it. I want to know what life will be like for my daughters.

Sorry for rambling there... I just want to explain why I'm asking so maybe I won't look so insensitive.

 

[ReneeP]

I hope this isn't seen as a morbid or inappropriate question. I only ask out of sincere curiousity as to what the future may hold for my daughters and I have no one else to ask.

What does it feel like to have different levels of lung function? I mean, for those who have had different levels, such as you've gone from 100% to 90% to 80%, etc... when do you really notice the difference? And when you're under 50%, how bad is that on a daily basis?

I feel like I'm being morbid here, and if my question offends anyone, please forgive me. I wonder things like this because it's something my two daughters are going to go through and I will not know what it's like for them but I want to have as much understanding as I can. I have asthma and there are times when I have a cold or something and I feel like I just can't get enough air. I have to take shallow, quick breathes. I always wonder if that's what the girls will feel like.

I guess the reason I am asking now is because I talked to a friend of mine from high school the other day. I haven't seen or talked to her in years, but she also has two daughters with CF. We live 1500 miles apart and unfortunately haven't kept in touch like we would like to have. But her youngest daughter (11) is being evaluated for a transplant and has lung function of 24%. That broke my heart for her and I truely didn't know what to say. I almost feel guilty that my 11 year old's lung function is 121% Both her girls have always been much more severe and have never been able to live "normal" lives. They've never been able to stay in school for any amount of time and spend much of their time in the hospital. I don't know what causes the severity of disease to vary so much (her girls have double Delta F508, same as mine). But anyway, it really got me to thinking about what it must be like. She said her daughter is unable to walk from the car to the house without being breathless. I lay in bed at night and wonder what life is like for her little girl. She is really having a hard time with the concept of transplant (they first mentioned it to her when her daughter was 9 but she refused at the time). I guess at some point you have to decide whether her quality of life is such that it is now worth the risk to do the transplant. I think that's where she is at. Maybe that's what made me wonder what it's like to have very low lung function. I just want to understand this damn disease better since we have to live with it. I want to know what life will be like for my daughters.

Sorry for rambling there... I just want to explain why I'm asking so maybe I won't look so insensitive.

 

[thelizardqueen]

Well I've gone from 115% to 59% since my childhood, and to tell you the truth, I don't really notice a whole lot of difference. I mean, I do feel shorter of breath sooner then before, but again, no big difference to me.

 

[thelizardqueen]

Well I've gone from 115% to 59% since my childhood, and to tell you the truth, I don't really notice a whole lot of difference. I mean, I do feel shorter of breath sooner then before, but again, no big difference to me.

 

[thelizardqueen]

Well I've gone from 115% to 59% since my childhood, and to tell you the truth, I don't really notice a whole lot of difference. I mean, I do feel shorter of breath sooner then before, but again, no big difference to me.

 

[kybert]

for me, i started to feel different at 65% and under. thats not to say i couldnt feel the effects of cf above 65%, but its more intense below that point. the infections seem to be worse too.

 

[kybert]

for me, i started to feel different at 65% and under. thats not to say i couldnt feel the effects of cf above 65%, but its more intense below that point. the infections seem to be worse too.

 

[kybert]

for me, i started to feel different at 65% and under. thats not to say i couldnt feel the effects of cf above 65%, but its more intense below that point. the infections seem to be worse too.

 

[Jem]

I have one lung for the past 7 1/2 years. 1/2 of my left lung was removed when I was 19 and the other half when I was 40 due to severe hemoptysis. Since then my FEV 1 has been as low as 42 but it is now sitting at 48. I can honestly say that I have tons of energy and am very active. No one would ever guess that I have one lung.

I'm sorry that your friend's daugther is having such a difficult time with her lung function. <img src="i/expressions/heart.gif" border="0">

I do hope your daughters will remain well for many many years to come. Don't let your fears for tomorrow spoil the joys of today. Just take one day at a time.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jem]

I have one lung for the past 7 1/2 years. 1/2 of my left lung was removed when I was 19 and the other half when I was 40 due to severe hemoptysis. Since then my FEV 1 has been as low as 42 but it is now sitting at 48. I can honestly say that I have tons of energy and am very active. No one would ever guess that I have one lung.

I'm sorry that your friend's daugther is having such a difficult time with her lung function. <img src="i/expressions/heart.gif" border="0">

I do hope your daughters will remain well for many many years to come. Don't let your fears for tomorrow spoil the joys of today. Just take one day at a time.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jem]

I have one lung for the past 7 1/2 years. 1/2 of my left lung was removed when I was 19 and the other half when I was 40 due to severe hemoptysis. Since then my FEV 1 has been as low as 42 but it is now sitting at 48. I can honestly say that I have tons of energy and am very active. No one would ever guess that I have one lung.

I'm sorry that your friend's daugther is having such a difficult time with her lung function. <img src="i/expressions/heart.gif" border="0">

I do hope your daughters will remain well for many many years to come. Don't let your fears for tomorrow spoil the joys of today. Just take one day at a time.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[coltsfan715]

I can not remember when I had lung function over the 75% mark. I think I was in elementary school at the time I was at about 75% maybe 80%. I don't really remember what that was like to be honest. I know I was never kept from doing anything I wanted because of my breathing - unless it involved playing outside in the freezing rain lol.

When I was a pre-teen and to the age of about 20 I had PFTs - FEV1 at about 50-60%. I contribute a lot of that to Pulmozyme honestly - I did not have any change in my FEV1 in almost a decade. I would notice that I could not run really long distances, but sprinting was fine. I actually was on the track team in 9th grade. I only ran in practice - I started with high jump and was moved to discus. I never really had any serious problems at that range either.

Once I hit 20 and was closing in on 21 I started to notice a decline in my health. Well actually I didn't notice a decline - but looking back at the numbers that is when the decline started. I think changing my care from pediatrics to adults is what cause the problem for me. I started to notice small things about 2 years ago. Things like I could not hold my breath as long as I once could. I was always a big swimmer as a kid and I loved diving well at about the age of 22 I found I could no longer hold my breath long enough to swim to the bottom of a 6 foot deep pool. That was hard for me - for whatever reason that was a huge blow for me mentally. I also got to the point where I made sure NO ONE tickled me because I would get to the point where I could not breath or catch my breath and I would feel like I was going to pass out.

I was around 40-50% at age 21 and to age 23. Then Just after my 23 birthday last year I experienced a setback. I had a partial lung collapse. I will say I couldn't catch my breath at all. It was bizarre. I was out playing softball one night with Kurt and our other friends then the next morning I was severely short of breath and couldn't even say 1 sentence without panting. I went to the doc and couldn't even do the breathing test because I felt like I would pass out due to lack of O2. I had a blockage that was causing the collapse, so they did a bronchoscopy and cleared the blockage and the lung reexpanded.

Since that collapse last year my lung function has been at about 30% - 35% being the peak since August of 2005 (the month of the collapse). I noticed a difference then. I couldn't climb stairs without getting winded. I couldn't run really at all without getting winded. Maybe a little bit but not to great of a distance. I also find that I have a hard time talking and walking at the same time.

When I am sick or fighting an infection now my PFTs drop into the 20% range. When they do that I have difficulty with alot of things. Talking like I usually do - I have to take more breaks and pauses. I have to slow myself down too so I don't get out of breath. I tend to want to do things really quick and my body starts out that way then realizes - pretty fast - that it can't maintain. I am able to walk at my pace - which is probably about 2 miles an hour if I am walking comfortably and not out of breath but if I carry anything while I am walking it makes it difficult.

Now being at 30%
I have more back muscle tightness and discomfort - from coughing, breathing more rapidly.
More things make me cough or cough more easily than I used too. Crying, laughing, drinking sometimes.
I have a harder time swallowing pills because I have to catch my breath or prepare myself by making sure I take in enough air to get me through swallowing the pills.
I get out of breath more easily - with walking up a flight of stairs, running, biking, walking whatever.
I also find that I get short of breath and have difficulty breathing if I eat too much - much more than I ever used too.
I also can't have any pressure on my chest or be squeezed or hugged tightly or I start to choke

For me the best way I can describe the short of breath feeling would be one of these ways.
1) My muscles and my mind and every part of me (but my lungs) are saying DEEEEEP breath!! and I go to breath deep and I am stopped short of getting all the air my body wants. I hope that makes sense. I would by like wanting to fill a garbage bag with air but only being able to fill a ziploc baggie.

2) Like I am only getting half what I should or less. I tell my mom to try covering at least 1 of her nostrils and breathing in and getting the amount of air you need. It can be difficult. If you really want to be extreme - cover up 1 entire nostril and half of the other one. Then try to breathe through your nose. It is hard to get enough through there. You have to work harder at it than you would if you had two full nostrils.

I don't know maybe those are silly comparisons but I figured I would share since you asked.

Hope that helped and sorry if it was really long.
Lindsey

 

[coltsfan715]

I can not remember when I had lung function over the 75% mark. I think I was in elementary school at the time I was at about 75% maybe 80%. I don't really remember what that was like to be honest. I know I was never kept from doing anything I wanted because of my breathing - unless it involved playing outside in the freezing rain lol.

When I was a pre-teen and to the age of about 20 I had PFTs - FEV1 at about 50-60%. I contribute a lot of that to Pulmozyme honestly - I did not have any change in my FEV1 in almost a decade. I would notice that I could not run really long distances, but sprinting was fine. I actually was on the track team in 9th grade. I only ran in practice - I started with high jump and was moved to discus. I never really had any serious problems at that range either.

Once I hit 20 and was closing in on 21 I started to notice a decline in my health. Well actually I didn't notice a decline - but looking back at the numbers that is when the decline started. I think changing my care from pediatrics to adults is what cause the problem for me. I started to notice small things about 2 years ago. Things like I could not hold my breath as long as I once could. I was always a big swimmer as a kid and I loved diving well at about the age of 22 I found I could no longer hold my breath long enough to swim to the bottom of a 6 foot deep pool. That was hard for me - for whatever reason that was a huge blow for me mentally. I also got to the point where I made sure NO ONE tickled me because I would get to the point where I could not breath or catch my breath and I would feel like I was going to pass out.

I was around 40-50% at age 21 and to age 23. Then Just after my 23 birthday last year I experienced a setback. I had a partial lung collapse. I will say I couldn't catch my breath at all. It was bizarre. I was out playing softball one night with Kurt and our other friends then the next morning I was severely short of breath and couldn't even say 1 sentence without panting. I went to the doc and couldn't even do the breathing test because I felt like I would pass out due to lack of O2. I had a blockage that was causing the collapse, so they did a bronchoscopy and cleared the blockage and the lung reexpanded.

Since that collapse last year my lung function has been at about 30% - 35% being the peak since August of 2005 (the month of the collapse). I noticed a difference then. I couldn't climb stairs without getting winded. I couldn't run really at all without getting winded. Maybe a little bit but not to great of a distance. I also find that I have a hard time talking and walking at the same time.

When I am sick or fighting an infection now my PFTs drop into the 20% range. When they do that I have difficulty with alot of things. Talking like I usually do - I have to take more breaks and pauses. I have to slow myself down too so I don't get out of breath. I tend to want to do things really quick and my body starts out that way then realizes - pretty fast - that it can't maintain. I am able to walk at my pace - which is probably about 2 miles an hour if I am walking comfortably and not out of breath but if I carry anything while I am walking it makes it difficult.

Now being at 30%
I have more back muscle tightness and discomfort - from coughing, breathing more rapidly.
More things make me cough or cough more easily than I used too. Crying, laughing, drinking sometimes.
I have a harder time swallowing pills because I have to catch my breath or prepare myself by making sure I take in enough air to get me through swallowing the pills.
I get out of breath more easily - with walking up a flight of stairs, running, biking, walking whatever.
I also find that I get short of breath and have difficulty breathing if I eat too much - much more than I ever used too.
I also can't have any pressure on my chest or be squeezed or hugged tightly or I start to choke

For me the best way I can describe the short of breath feeling would be one of these ways.
1) My muscles and my mind and every part of me (but my lungs) are saying DEEEEEP breath!! and I go to breath deep and I am stopped short of getting all the air my body wants. I hope that makes sense. I would by like wanting to fill a garbage bag with air but only being able to fill a ziploc baggie.

2) Like I am only getting half what I should or less. I tell my mom to try covering at least 1 of her nostrils and breathing in and getting the amount of air you need. It can be difficult. If you really want to be extreme - cover up 1 entire nostril and half of the other one. Then try to breathe through your nose. It is hard to get enough through there. You have to work harder at it than you would if you had two full nostrils.

I don't know maybe those are silly comparisons but I figured I would share since you asked.

Hope that helped and sorry if it was really long.
Lindsey

 

[coltsfan715]

I can not remember when I had lung function over the 75% mark. I think I was in elementary school at the time I was at about 75% maybe 80%. I don't really remember what that was like to be honest. I know I was never kept from doing anything I wanted because of my breathing - unless it involved playing outside in the freezing rain lol.

When I was a pre-teen and to the age of about 20 I had PFTs - FEV1 at about 50-60%. I contribute a lot of that to Pulmozyme honestly - I did not have any change in my FEV1 in almost a decade. I would notice that I could not run really long distances, but sprinting was fine. I actually was on the track team in 9th grade. I only ran in practice - I started with high jump and was moved to discus. I never really had any serious problems at that range either.

Once I hit 20 and was closing in on 21 I started to notice a decline in my health. Well actually I didn't notice a decline - but looking back at the numbers that is when the decline started. I think changing my care from pediatrics to adults is what cause the problem for me. I started to notice small things about 2 years ago. Things like I could not hold my breath as long as I once could. I was always a big swimmer as a kid and I loved diving well at about the age of 22 I found I could no longer hold my breath long enough to swim to the bottom of a 6 foot deep pool. That was hard for me - for whatever reason that was a huge blow for me mentally. I also got to the point where I made sure NO ONE tickled me because I would get to the point where I could not breath or catch my breath and I would feel like I was going to pass out.

I was around 40-50% at age 21 and to age 23. Then Just after my 23 birthday last year I experienced a setback. I had a partial lung collapse. I will say I couldn't catch my breath at all. It was bizarre. I was out playing softball one night with Kurt and our other friends then the next morning I was severely short of breath and couldn't even say 1 sentence without panting. I went to the doc and couldn't even do the breathing test because I felt like I would pass out due to lack of O2. I had a blockage that was causing the collapse, so they did a bronchoscopy and cleared the blockage and the lung reexpanded.

Since that collapse last year my lung function has been at about 30% - 35% being the peak since August of 2005 (the month of the collapse). I noticed a difference then. I couldn't climb stairs without getting winded. I couldn't run really at all without getting winded. Maybe a little bit but not to great of a distance. I also find that I have a hard time talking and walking at the same time.

When I am sick or fighting an infection now my PFTs drop into the 20% range. When they do that I have difficulty with alot of things. Talking like I usually do - I have to take more breaks and pauses. I have to slow myself down too so I don't get out of breath. I tend to want to do things really quick and my body starts out that way then realizes - pretty fast - that it can't maintain. I am able to walk at my pace - which is probably about 2 miles an hour if I am walking comfortably and not out of breath but if I carry anything while I am walking it makes it difficult.

Now being at 30%
I have more back muscle tightness and discomfort - from coughing, breathing more rapidly.
More things make me cough or cough more easily than I used too. Crying, laughing, drinking sometimes.
I have a harder time swallowing pills because I have to catch my breath or prepare myself by making sure I take in enough air to get me through swallowing the pills.
I get out of breath more easily - with walking up a flight of stairs, running, biking, walking whatever.
I also find that I get short of breath and have difficulty breathing if I eat too much - much more than I ever used too.
I also can't have any pressure on my chest or be squeezed or hugged tightly or I start to choke

For me the best way I can describe the short of breath feeling would be one of these ways.
1) My muscles and my mind and every part of me (but my lungs) are saying DEEEEEP breath!! and I go to breath deep and I am stopped short of getting all the air my body wants. I hope that makes sense. I would by like wanting to fill a garbage bag with air but only being able to fill a ziploc baggie.

2) Like I am only getting half what I should or less. I tell my mom to try covering at least 1 of her nostrils and breathing in and getting the amount of air you need. It can be difficult. If you really want to be extreme - cover up 1 entire nostril and half of the other one. Then try to breathe through your nose. It is hard to get enough through there. You have to work harder at it than you would if you had two full nostrils.

I don't know maybe those are silly comparisons but I figured I would share since you asked.

Hope that helped and sorry if it was really long.
Lindsey

 

[Allie]

This is, of course, as I remember it, as I remember speaking to him about it

Ry functioned as a totally normal person from 100-70. Not to say he wasn't occaisionally breathless, or had a coughihng attack, but it never really limited him

69-55 He started having to really slow down, he continued to do the things he loved, but certain things were more tiring, and more of a struggle. He handled it well, but he had to take it much slower.

54-30 things were harder to just 'do'. He had to take into account how he felt that day, how long he'd have to hike, how he'd feel at the end of the day, etc. He had to give most of his activities.He noticed breathlessness often, and struggled with some daily tasks at times.

29-23 Daily life is a task in and of itself. Ry was frequently short of breath, at least a few times each day, and had to budget his energy wisely. Around 25, he was on o2.

22-20 Short of breath more often than not, Frequent pain, and struggle to function

19-death Needed help with many daily tasks, constantly short of breath, and in pain more often than not. Unable to take care of himself without help. Not exactly the happiest camper

 

[Allie]

This is, of course, as I remember it, as I remember speaking to him about it

Ry functioned as a totally normal person from 100-70. Not to say he wasn't occaisionally breathless, or had a coughihng attack, but it never really limited him

69-55 He started having to really slow down, he continued to do the things he loved, but certain things were more tiring, and more of a struggle. He handled it well, but he had to take it much slower.

54-30 things were harder to just 'do'. He had to take into account how he felt that day, how long he'd have to hike, how he'd feel at the end of the day, etc. He had to give most of his activities.He noticed breathlessness often, and struggled with some daily tasks at times.

29-23 Daily life is a task in and of itself. Ry was frequently short of breath, at least a few times each day, and had to budget his energy wisely. Around 25, he was on o2.

22-20 Short of breath more often than not, Frequent pain, and struggle to function

19-death Needed help with many daily tasks, constantly short of breath, and in pain more often than not. Unable to take care of himself without help. Not exactly the happiest camper

 

[Allie]

This is, of course, as I remember it, as I remember speaking to him about it

Ry functioned as a totally normal person from 100-70. Not to say he wasn't occaisionally breathless, or had a coughihng attack, but it never really limited him

69-55 He started having to really slow down, he continued to do the things he loved, but certain things were more tiring, and more of a struggle. He handled it well, but he had to take it much slower.

54-30 things were harder to just 'do'. He had to take into account how he felt that day, how long he'd have to hike, how he'd feel at the end of the day, etc. He had to give most of his activities.He noticed breathlessness often, and struggled with some daily tasks at times.

29-23 Daily life is a task in and of itself. Ry was frequently short of breath, at least a few times each day, and had to budget his energy wisely. Around 25, he was on o2.

22-20 Short of breath more often than not, Frequent pain, and struggle to function

19-death Needed help with many daily tasks, constantly short of breath, and in pain more often than not. Unable to take care of himself without help. Not exactly the happiest camper

 

[littledebbie]

I would say I noticed a life change at about 30% (I was about 17 yrs old I think). I am currently in the 22%-17% range. And I just quit my job in July (I had been working full time). I need more sleep. Showering is exhausting. Some days are just "bad days" and I don't get much done. I ache a lot. Like Linsey's analogies I tell people to try to breathe through a straw. It's okay for a few breaths but after a minute or two you want to take a "real" breath. Still, I live on my own..but I have a wonderful Mom who helps me with carrying groceries and laundry up to my apt. etc. Cleaning my apt. can take a day or two because cleaning the bathroom wipes me out for the day and vacuuming is tiring too. I guess my overwhelming complaint is fatigue. Well, fatigue and achiness.

And I don't think it's a morbid question <img src="i/expressions/face-icon-small-smile.gif" border="0"> And even if it was...what better place to ask a morbid question?

 

[littledebbie]

I would say I noticed a life change at about 30% (I was about 17 yrs old I think). I am currently in the 22%-17% range. And I just quit my job in July (I had been working full time). I need more sleep. Showering is exhausting. Some days are just "bad days" and I don't get much done. I ache a lot. Like Linsey's analogies I tell people to try to breathe through a straw. It's okay for a few breaths but after a minute or two you want to take a "real" breath. Still, I live on my own..but I have a wonderful Mom who helps me with carrying groceries and laundry up to my apt. etc. Cleaning my apt. can take a day or two because cleaning the bathroom wipes me out for the day and vacuuming is tiring too. I guess my overwhelming complaint is fatigue. Well, fatigue and achiness.

And I don't think it's a morbid question <img src="i/expressions/face-icon-small-smile.gif" border="0"> And even if it was...what better place to ask a morbid question?