high fev 1 and low fev1 and how you feel on a daily basis

[Wheezie]

I don't know much about decrease in FEV1, but I think lightNlife has it right - we get so used to functioning with crappy lungs that it's really difficult to notice the decrease in function. The body has an amazing ability to compensate for and adjust to certain losses.

But Ricky123, wasn't it you that started that thread about level of compliance? I believe you said you didn't feel it was necessary to practice 100% compliance, that on a scale of 1-10 you gave yourself a 7 or 8 (I think) and that you felt that was perfectly acceptable. Perhaps this way of thinking could be a contributing factor to your rapid decrease in lung function over the past couple of years?? I felt exactly the same way until I read through that thread and listened to what others said about it. Since then, I've been a 10 and I will never go back to giving myself anything less. Perhaps you should reconsider your views on the subject as well.

 

[Wheezie]

I don't know much about decrease in FEV1, but I think lightNlife has it right - we get so used to functioning with crappy lungs that it's really difficult to notice the decrease in function. The body has an amazing ability to compensate for and adjust to certain losses.

But Ricky123, wasn't it you that started that thread about level of compliance? I believe you said you didn't feel it was necessary to practice 100% compliance, that on a scale of 1-10 you gave yourself a 7 or 8 (I think) and that you felt that was perfectly acceptable. Perhaps this way of thinking could be a contributing factor to your rapid decrease in lung function over the past couple of years?? I felt exactly the same way until I read through that thread and listened to what others said about it. Since then, I've been a 10 and I will never go back to giving myself anything less. Perhaps you should reconsider your views on the subject as well.

 

[MCGrad2006]

My PFT's have recently had a huge drop as well, but mine have always fluctuated A LOT. In the past seven months, I went from 64% to 76% to 96% then down to 86% and now 76%. I think the one really low and the one really high one tho were flukes almost. I did end up in the hosp at 64%, then my PFT's jumped two months later to the 96%. My baseline over the past two years though has been mostly high 70's-ish. One thing that my nurse said the other day when I was getting checked though, was that since we know I have the potential to be 96% (which I NEVER thought I could get) that we should do something and get it back there. And yes I will prob end up on IV's in the next few weeks unless something comes up in the culture I gave them in which case I will be in sooner...lol.

One of the reasons I dropped so much 7 months ago was compliance...I had been super busy with student teaching and admittedly was not doing well with my meds. I wasnt taking enzymes with lunch...just didnt feel like bringing them to school with me...and thus taking them in front of ppl. This caused me to lose five pounds...which is kind of a lot on someone who is normally 120. Then I also wasnt being compliant with my nebs either...maybe doing them two or three times a week. I consider myself VERY lucky that I was able to bounce right back up to 96. I had a lot more time to do meds and realized the importance of it. I am still VERY compliant, but I am still dropping...so I dunno what will happen.

I notice when I do drop that I get tired more easily, and very out of breath. Like right now, even at 76% I get out of breath. I think, though sometimes this is an endurance related issue. EXERCISE is so important to all of us and if you dont keep up witht part of a daily routine you will notice a change in your ability. You NEED to be able to work up towards a goal and once you are able to tolerate that you will notice a difference.

 

[MCGrad2006]

My PFT's have recently had a huge drop as well, but mine have always fluctuated A LOT. In the past seven months, I went from 64% to 76% to 96% then down to 86% and now 76%. I think the one really low and the one really high one tho were flukes almost. I did end up in the hosp at 64%, then my PFT's jumped two months later to the 96%. My baseline over the past two years though has been mostly high 70's-ish. One thing that my nurse said the other day when I was getting checked though, was that since we know I have the potential to be 96% (which I NEVER thought I could get) that we should do something and get it back there. And yes I will prob end up on IV's in the next few weeks unless something comes up in the culture I gave them in which case I will be in sooner...lol.

One of the reasons I dropped so much 7 months ago was compliance...I had been super busy with student teaching and admittedly was not doing well with my meds. I wasnt taking enzymes with lunch...just didnt feel like bringing them to school with me...and thus taking them in front of ppl. This caused me to lose five pounds...which is kind of a lot on someone who is normally 120. Then I also wasnt being compliant with my nebs either...maybe doing them two or three times a week. I consider myself VERY lucky that I was able to bounce right back up to 96. I had a lot more time to do meds and realized the importance of it. I am still VERY compliant, but I am still dropping...so I dunno what will happen.

I notice when I do drop that I get tired more easily, and very out of breath. Like right now, even at 76% I get out of breath. I think, though sometimes this is an endurance related issue. EXERCISE is so important to all of us and if you dont keep up witht part of a daily routine you will notice a change in your ability. You NEED to be able to work up towards a goal and once you are able to tolerate that you will notice a difference.

 

[MCGrad2006]

My PFT's have recently had a huge drop as well, but mine have always fluctuated A LOT. In the past seven months, I went from 64% to 76% to 96% then down to 86% and now 76%. I think the one really low and the one really high one tho were flukes almost. I did end up in the hosp at 64%, then my PFT's jumped two months later to the 96%. My baseline over the past two years though has been mostly high 70's-ish. One thing that my nurse said the other day when I was getting checked though, was that since we know I have the potential to be 96% (which I NEVER thought I could get) that we should do something and get it back there. And yes I will prob end up on IV's in the next few weeks unless something comes up in the culture I gave them in which case I will be in sooner...lol.

One of the reasons I dropped so much 7 months ago was compliance...I had been super busy with student teaching and admittedly was not doing well with my meds. I wasnt taking enzymes with lunch...just didnt feel like bringing them to school with me...and thus taking them in front of ppl. This caused me to lose five pounds...which is kind of a lot on someone who is normally 120. Then I also wasnt being compliant with my nebs either...maybe doing them two or three times a week. I consider myself VERY lucky that I was able to bounce right back up to 96. I had a lot more time to do meds and realized the importance of it. I am still VERY compliant, but I am still dropping...so I dunno what will happen.

I notice when I do drop that I get tired more easily, and very out of breath. Like right now, even at 76% I get out of breath. I think, though sometimes this is an endurance related issue. EXERCISE is so important to all of us and if you dont keep up witht part of a daily routine you will notice a change in your ability. You NEED to be able to work up towards a goal and once you are able to tolerate that you will notice a difference.

 

[MCGrad2006]

My PFT's have recently had a huge drop as well, but mine have always fluctuated A LOT. In the past seven months, I went from 64% to 76% to 96% then down to 86% and now 76%. I think the one really low and the one really high one tho were flukes almost. I did end up in the hosp at 64%, then my PFT's jumped two months later to the 96%. My baseline over the past two years though has been mostly high 70's-ish. One thing that my nurse said the other day when I was getting checked though, was that since we know I have the potential to be 96% (which I NEVER thought I could get) that we should do something and get it back there. And yes I will prob end up on IV's in the next few weeks unless something comes up in the culture I gave them in which case I will be in sooner...lol.

One of the reasons I dropped so much 7 months ago was compliance...I had been super busy with student teaching and admittedly was not doing well with my meds. I wasnt taking enzymes with lunch...just didnt feel like bringing them to school with me...and thus taking them in front of ppl. This caused me to lose five pounds...which is kind of a lot on someone who is normally 120. Then I also wasnt being compliant with my nebs either...maybe doing them two or three times a week. I consider myself VERY lucky that I was able to bounce right back up to 96. I had a lot more time to do meds and realized the importance of it. I am still VERY compliant, but I am still dropping...so I dunno what will happen.

I notice when I do drop that I get tired more easily, and very out of breath. Like right now, even at 76% I get out of breath. I think, though sometimes this is an endurance related issue. EXERCISE is so important to all of us and if you dont keep up witht part of a daily routine you will notice a change in your ability. You NEED to be able to work up towards a goal and once you are able to tolerate that you will notice a difference.

 

[MCGrad2006]

My PFT's have recently had a huge drop as well, but mine have always fluctuated A LOT. In the past seven months, I went from 64% to 76% to 96% then down to 86% and now 76%. I think the one really low and the one really high one tho were flukes almost. I did end up in the hosp at 64%, then my PFT's jumped two months later to the 96%. My baseline over the past two years though has been mostly high 70's-ish. One thing that my nurse said the other day when I was getting checked though, was that since we know I have the potential to be 96% (which I NEVER thought I could get) that we should do something and get it back there. And yes I will prob end up on IV's in the next few weeks unless something comes up in the culture I gave them in which case I will be in sooner...lol.

One of the reasons I dropped so much 7 months ago was compliance...I had been super busy with student teaching and admittedly was not doing well with my meds. I wasnt taking enzymes with lunch...just didnt feel like bringing them to school with me...and thus taking them in front of ppl. This caused me to lose five pounds...which is kind of a lot on someone who is normally 120. Then I also wasnt being compliant with my nebs either...maybe doing them two or three times a week. I consider myself VERY lucky that I was able to bounce right back up to 96. I had a lot more time to do meds and realized the importance of it. I am still VERY compliant, but I am still dropping...so I dunno what will happen.

I notice when I do drop that I get tired more easily, and very out of breath. Like right now, even at 76% I get out of breath. I think, though sometimes this is an endurance related issue. EXERCISE is so important to all of us and if you dont keep up witht part of a daily routine you will notice a change in your ability. You NEED to be able to work up towards a goal and once you are able to tolerate that you will notice a difference.

 

[MCGrad2006]

My PFT's have recently had a huge drop as well, but mine have always fluctuated A LOT. In the past seven months, I went from 64% to 76% to 96% then down to 86% and now 76%. I think the one really low and the one really high one tho were flukes almost. I did end up in the hosp at 64%, then my PFT's jumped two months later to the 96%. My baseline over the past two years though has been mostly high 70's-ish. One thing that my nurse said the other day when I was getting checked though, was that since we know I have the potential to be 96% (which I NEVER thought I could get) that we should do something and get it back there. And yes I will prob end up on IV's in the next few weeks unless something comes up in the culture I gave them in which case I will be in sooner...lol.

One of the reasons I dropped so much 7 months ago was compliance...I had been super busy with student teaching and admittedly was not doing well with my meds. I wasnt taking enzymes with lunch...just didnt feel like bringing them to school with me...and thus taking them in front of ppl. This caused me to lose five pounds...which is kind of a lot on someone who is normally 120. Then I also wasnt being compliant with my nebs either...maybe doing them two or three times a week. I consider myself VERY lucky that I was able to bounce right back up to 96. I had a lot more time to do meds and realized the importance of it. I am still VERY compliant, but I am still dropping...so I dunno what will happen.

I notice when I do drop that I get tired more easily, and very out of breath. Like right now, even at 76% I get out of breath. I think, though sometimes this is an endurance related issue. EXERCISE is so important to all of us and if you dont keep up witht part of a daily routine you will notice a change in your ability. You NEED to be able to work up towards a goal and once you are able to tolerate that you will notice a difference.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

okay just had my clinic appointement yesterday and found my lung function has dropped again its now down to fev 1 62 a drop of around 20 % in 2 years it was fev1 84 this time 2 years ago .But the thing is is i dont feel that different compared to when my pfts were high.I can still walk about without little problems and the only thing is i notice i become a lot more breathless when i play sport thing i want to know is have others who have had big drops in their pfts felt much difference in there daily activities ie walking etc</end quote></div>


Can you just clarify IF you had been to the clinic, doing pfts, doing treatments, doing follow up between the time of the fev1 being 84 & the current fev1 of 62?

I would hate to criticize the doctor if you hadnt been doing your part.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

okay just had my clinic appointement yesterday and found my lung function has dropped again its now down to fev 1 62 a drop of around 20 % in 2 years it was fev1 84 this time 2 years ago .But the thing is is i dont feel that different compared to when my pfts were high.I can still walk about without little problems and the only thing is i notice i become a lot more breathless when i play sport thing i want to know is have others who have had big drops in their pfts felt much difference in there daily activities ie walking etc</end quote></div>


Can you just clarify IF you had been to the clinic, doing pfts, doing treatments, doing follow up between the time of the fev1 being 84 & the current fev1 of 62?

I would hate to criticize the doctor if you hadnt been doing your part.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

okay just had my clinic appointement yesterday and found my lung function has dropped again its now down to fev 1 62 a drop of around 20 % in 2 years it was fev1 84 this time 2 years ago .But the thing is is i dont feel that different compared to when my pfts were high.I can still walk about without little problems and the only thing is i notice i become a lot more breathless when i play sport thing i want to know is have others who have had big drops in their pfts felt much difference in there daily activities ie walking etc</end quote></div>


Can you just clarify IF you had been to the clinic, doing pfts, doing treatments, doing follow up between the time of the fev1 being 84 & the current fev1 of 62?

I would hate to criticize the doctor if you hadnt been doing your part.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

okay just had my clinic appointement yesterday and found my lung function has dropped again its now down to fev 1 62 a drop of around 20 % in 2 years it was fev1 84 this time 2 years ago .But the thing is is i dont feel that different compared to when my pfts were high.I can still walk about without little problems and the only thing is i notice i become a lot more breathless when i play sport thing i want to know is have others who have had big drops in their pfts felt much difference in there daily activities ie walking etc</end quote></div>


Can you just clarify IF you had been to the clinic, doing pfts, doing treatments, doing follow up between the time of the fev1 being 84 & the current fev1 of 62?

I would hate to criticize the doctor if you hadnt been doing your part.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

okay just had my clinic appointement yesterday and found my lung function has dropped again its now down to fev 1 62 a drop of around 20 % in 2 years it was fev1 84 this time 2 years ago .But the thing is is i dont feel that different compared to when my pfts were high.I can still walk about without little problems and the only thing is i notice i become a lot more breathless when i play sport thing i want to know is have others who have had big drops in their pfts felt much difference in there daily activities ie walking etc</end quote>


Can you just clarify IF you had been to the clinic, doing pfts, doing treatments, doing follow up between the time of the fev1 being 84 & the current fev1 of 62?

I would hate to criticize the doctor if you hadnt been doing your part.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

okay just had my clinic appointement yesterday and found my lung function has dropped again its now down to fev 1 62 a drop of around 20 % in 2 years it was fev1 84 this time 2 years ago .But the thing is is i dont feel that different compared to when my pfts were high.I can still walk about without little problems and the only thing is i notice i become a lot more breathless when i play sport thing i want to know is have others who have had big drops in their pfts felt much difference in there daily activities ie walking etc</end quote>


Can you just clarify IF you had been to the clinic, doing pfts, doing treatments, doing follow up between the time of the fev1 being 84 & the current fev1 of 62?

I would hate to criticize the doctor if you hadnt been doing your part.

 

[Ricky123]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

I was blindsided by a completely unexpected drop in my FEV1 about 3 months ago. On my birthday (April 28) I felt fabulous. I had more energy than ever it seemed. I even did a 12-hour round trip to Phoenix by myself to visit a friend just 2 days later. When I had a clinic appointment on May 2, I was fully expecting that my spirometry would show that I was in the best shape I'd been in months. Not so. I dropped 15% and ended up in the hospital.



Now I'm feeling really good. My FEV1 is higher, my pulse ox has improved from 88 to 97, and my peak flow is about 480L/min. I think over the last year I had gotten so used to being "sick and tired" that the gradual decline was nearly imperceptible. Sort of like leaving a glass of water out for a few weeks. The evaporation is obviously taking place, but you can't see the day to day drop in the level of the water. I think that's how the decline is for a lot of us as we lose lung function. Sometimes we're able to gather up the metaphorical water droplets and condense them into our glass. This may make it a little fuller for awhile, but eventually nature wins out and evaporation will empty the glass.



Not to get overly philosophical about it, but that analogy makes me realize even more so that life is just a vapor. "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." (James 4:14, NIV) I'm so thankful that when my life on earth is finished, my eternity is secure with Christ in heaven.</end quote></div>
great analysis of how cf can deteriate in someone thanks

 

[Ricky123]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

I was blindsided by a completely unexpected drop in my FEV1 about 3 months ago. On my birthday (April 28) I felt fabulous. I had more energy than ever it seemed. I even did a 12-hour round trip to Phoenix by myself to visit a friend just 2 days later. When I had a clinic appointment on May 2, I was fully expecting that my spirometry would show that I was in the best shape I'd been in months. Not so. I dropped 15% and ended up in the hospital.



Now I'm feeling really good. My FEV1 is higher, my pulse ox has improved from 88 to 97, and my peak flow is about 480L/min. I think over the last year I had gotten so used to being "sick and tired" that the gradual decline was nearly imperceptible. Sort of like leaving a glass of water out for a few weeks. The evaporation is obviously taking place, but you can't see the day to day drop in the level of the water. I think that's how the decline is for a lot of us as we lose lung function. Sometimes we're able to gather up the metaphorical water droplets and condense them into our glass. This may make it a little fuller for awhile, but eventually nature wins out and evaporation will empty the glass.



Not to get overly philosophical about it, but that analogy makes me realize even more so that life is just a vapor. "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." (James 4:14, NIV) I'm so thankful that when my life on earth is finished, my eternity is secure with Christ in heaven.</end quote></div>
great analysis of how cf can deteriate in someone thanks

 

[Ricky123]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

I was blindsided by a completely unexpected drop in my FEV1 about 3 months ago. On my birthday (April 28) I felt fabulous. I had more energy than ever it seemed. I even did a 12-hour round trip to Phoenix by myself to visit a friend just 2 days later. When I had a clinic appointment on May 2, I was fully expecting that my spirometry would show that I was in the best shape I'd been in months. Not so. I dropped 15% and ended up in the hospital.



Now I'm feeling really good. My FEV1 is higher, my pulse ox has improved from 88 to 97, and my peak flow is about 480L/min. I think over the last year I had gotten so used to being "sick and tired" that the gradual decline was nearly imperceptible. Sort of like leaving a glass of water out for a few weeks. The evaporation is obviously taking place, but you can't see the day to day drop in the level of the water. I think that's how the decline is for a lot of us as we lose lung function. Sometimes we're able to gather up the metaphorical water droplets and condense them into our glass. This may make it a little fuller for awhile, but eventually nature wins out and evaporation will empty the glass.



Not to get overly philosophical about it, but that analogy makes me realize even more so that life is just a vapor. "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." (James 4:14, NIV) I'm so thankful that when my life on earth is finished, my eternity is secure with Christ in heaven.</end quote></div>
great analysis of how cf can deteriate in someone thanks

 

[Ricky123]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

I was blindsided by a completely unexpected drop in my FEV1 about 3 months ago. On my birthday (April 28) I felt fabulous. I had more energy than ever it seemed. I even did a 12-hour round trip to Phoenix by myself to visit a friend just 2 days later. When I had a clinic appointment on May 2, I was fully expecting that my spirometry would show that I was in the best shape I'd been in months. Not so. I dropped 15% and ended up in the hospital.



Now I'm feeling really good. My FEV1 is higher, my pulse ox has improved from 88 to 97, and my peak flow is about 480L/min. I think over the last year I had gotten so used to being "sick and tired" that the gradual decline was nearly imperceptible. Sort of like leaving a glass of water out for a few weeks. The evaporation is obviously taking place, but you can't see the day to day drop in the level of the water. I think that's how the decline is for a lot of us as we lose lung function. Sometimes we're able to gather up the metaphorical water droplets and condense them into our glass. This may make it a little fuller for awhile, but eventually nature wins out and evaporation will empty the glass.



Not to get overly philosophical about it, but that analogy makes me realize even more so that life is just a vapor. "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." (James 4:14, NIV) I'm so thankful that when my life on earth is finished, my eternity is secure with Christ in heaven.</end quote></div>
great analysis of how cf can deteriate in someone thanks

 

[Ricky123]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

I was blindsided by a completely unexpected drop in my FEV1 about 3 months ago. On my birthday (April 28) I felt fabulous. I had more energy than ever it seemed. I even did a 12-hour round trip to Phoenix by myself to visit a friend just 2 days later. When I had a clinic appointment on May 2, I was fully expecting that my spirometry would show that I was in the best shape I'd been in months. Not so. I dropped 15% and ended up in the hospital.



Now I'm feeling really good. My FEV1 is higher, my pulse ox has improved from 88 to 97, and my peak flow is about 480L/min. I think over the last year I had gotten so used to being "sick and tired" that the gradual decline was nearly imperceptible. Sort of like leaving a glass of water out for a few weeks. The evaporation is obviously taking place, but you can't see the day to day drop in the level of the water. I think that's how the decline is for a lot of us as we lose lung function. Sometimes we're able to gather up the metaphorical water droplets and condense them into our glass. This may make it a little fuller for awhile, but eventually nature wins out and evaporation will empty the glass.



Not to get overly philosophical about it, but that analogy makes me realize even more so that life is just a vapor. "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." (James 4:14, NIV) I'm so thankful that when my life on earth is finished, my eternity is secure with Christ in heaven.</end quote>
great analysis of how cf can deteriate in someone thanks

 

[Ricky123]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

I was blindsided by a completely unexpected drop in my FEV1 about 3 months ago. On my birthday (April 28) I felt fabulous. I had more energy than ever it seemed. I even did a 12-hour round trip to Phoenix by myself to visit a friend just 2 days later. When I had a clinic appointment on May 2, I was fully expecting that my spirometry would show that I was in the best shape I'd been in months. Not so. I dropped 15% and ended up in the hospital.



Now I'm feeling really good. My FEV1 is higher, my pulse ox has improved from 88 to 97, and my peak flow is about 480L/min. I think over the last year I had gotten so used to being "sick and tired" that the gradual decline was nearly imperceptible. Sort of like leaving a glass of water out for a few weeks. The evaporation is obviously taking place, but you can't see the day to day drop in the level of the water. I think that's how the decline is for a lot of us as we lose lung function. Sometimes we're able to gather up the metaphorical water droplets and condense them into our glass. This may make it a little fuller for awhile, but eventually nature wins out and evaporation will empty the glass.



Not to get overly philosophical about it, but that analogy makes me realize even more so that life is just a vapor. "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." (James 4:14, NIV) I'm so thankful that when my life on earth is finished, my eternity is secure with Christ in heaven.</end quote>
great analysis of how cf can deteriate in someone thanks