New PFT system?

[GrantsWife]

This past Friday my husband went for a checkup which of course required him to take his PFT's. Normally when he comes out from it, he can tell me a result but he actually didn't understand it this time.

Normally they tell him like 68% or so but this time they told him that he was breathing 2.4 liters or something. He did not understand this. As he hadn't been there in over 6 months, a lot of things had changed as well as some of the doctors. Some permanently moved, some gone on vacation, and others on sick leave. So anyway, my husband has a new doctor now who is from Ontario and he was already used to this setup. He could not tell my husband if his PFT's were good or bad compared to the other results from the other 6 months which was very frustrating. He says they are totaled differently than they normally are.

My husbands PFT results used to be close to 70% but this result said 53%. Surely his results aren't that big of a drop or else I would imagine he would be in the hospital right now with a drop like that. Obviously we are very discouraged because no one was there to describe or compare the old results to the new ones so I don't know whether my love is extremely sick or not.

I really don't like hearing that his results are 53% so I am hoping we can get them higher than that. Anyway, has anyone else experienced a sudden change like that with the way they total the PFT percentage? Did you notice a big drop and is that normal in the new way they are totaling things? Or is my husband extremely sick?

 

[GrantsWife]

This past Friday my husband went for a checkup which of course required him to take his PFT's. Normally when he comes out from it, he can tell me a result but he actually didn't understand it this time.

Normally they tell him like 68% or so but this time they told him that he was breathing 2.4 liters or something. He did not understand this. As he hadn't been there in over 6 months, a lot of things had changed as well as some of the doctors. Some permanently moved, some gone on vacation, and others on sick leave. So anyway, my husband has a new doctor now who is from Ontario and he was already used to this setup. He could not tell my husband if his PFT's were good or bad compared to the other results from the other 6 months which was very frustrating. He says they are totaled differently than they normally are.

My husbands PFT results used to be close to 70% but this result said 53%. Surely his results aren't that big of a drop or else I would imagine he would be in the hospital right now with a drop like that. Obviously we are very discouraged because no one was there to describe or compare the old results to the new ones so I don't know whether my love is extremely sick or not.

I really don't like hearing that his results are 53% so I am hoping we can get them higher than that. Anyway, has anyone else experienced a sudden change like that with the way they total the PFT percentage? Did you notice a big drop and is that normal in the new way they are totaling things? Or is my husband extremely sick?

 

[GrantsWife]

This past Friday my husband went for a checkup which of course required him to take his PFT's. Normally when he comes out from it, he can tell me a result but he actually didn't understand it this time.
<br />
<br />Normally they tell him like 68% or so but this time they told him that he was breathing 2.4 liters or something. He did not understand this. As he hadn't been there in over 6 months, a lot of things had changed as well as some of the doctors. Some permanently moved, some gone on vacation, and others on sick leave. So anyway, my husband has a new doctor now who is from Ontario and he was already used to this setup. He could not tell my husband if his PFT's were good or bad compared to the other results from the other 6 months which was very frustrating. He says they are totaled differently than they normally are.
<br />
<br />My husbands PFT results used to be close to 70% but this result said 53%. Surely his results aren't that big of a drop or else I would imagine he would be in the hospital right now with a drop like that. Obviously we are very discouraged because no one was there to describe or compare the old results to the new ones so I don't know whether my love is extremely sick or not.
<br />
<br />I really don't like hearing that his results are 53% so I am hoping we can get them higher than that. Anyway, has anyone else experienced a sudden change like that with the way they total the PFT percentage? Did you notice a big drop and is that normal in the new way they are totaling things? Or is my husband extremely sick?

 

[tessa55454]

My understanding is he blew 2.4 liters for the first ten seconds of his pulmonary function test. So he can expire 53% of what a "normal/healthy" person can, which I think is around 3.5 liters for someone his height and weight.

He might not be "sick" per se. However, that is a significant drop to me. If I dropped 17% I would be concerned. I would just work harder and maybe up my therapys as well as exercise. Does he have a lung infection? Since he fluctuated from 70 to 53 so quickly, I imagine he can make up the difference again with some hard work an maybe an antibiotic or something. If the doctor's office doesn't call him to find out if he has a lung infection, if he did a sputum culture, I would definitley call.

Hope that helps?

 

[tessa55454]

My understanding is he blew 2.4 liters for the first ten seconds of his pulmonary function test. So he can expire 53% of what a "normal/healthy" person can, which I think is around 3.5 liters for someone his height and weight.

He might not be "sick" per se. However, that is a significant drop to me. If I dropped 17% I would be concerned. I would just work harder and maybe up my therapys as well as exercise. Does he have a lung infection? Since he fluctuated from 70 to 53 so quickly, I imagine he can make up the difference again with some hard work an maybe an antibiotic or something. If the doctor's office doesn't call him to find out if he has a lung infection, if he did a sputum culture, I would definitley call.

Hope that helps?

 

[tessa55454]

My understanding is he blew 2.4 liters for the first ten seconds of his pulmonary function test. So he can expire 53% of what a "normal/healthy" person can, which I think is around 3.5 liters for someone his height and weight.
<br />
<br />He might not be "sick" per se. However, that is a significant drop to me. If I dropped 17% I would be concerned. I would just work harder and maybe up my therapys as well as exercise. Does he have a lung infection? Since he fluctuated from 70 to 53 so quickly, I imagine he can make up the difference again with some hard work an maybe an antibiotic or something. If the doctor's office doesn't call him to find out if he has a lung infection, if he did a sputum culture, I would definitley call.
<br />
<br />Hope that helps?

 

[GrantsWife]

Thanks but they honestly couldn't tell if it was an actual drop or not.
The PFT percentage they used to do did not go by height, weight, age, gender, etc.

This is his first time seeing a result based on this so it was hard for them to know whether there was a significant drop or not since this is a percentage on a new scale versus the way they used to do it here. To me, I freaked out when I heard that because I assumed he would be in the hospital. Though they said the way the percentages were totaled before and the way they are now could technically come out to be the same percentage, if that somehow makes any sense?

I am very concerned that he could have an infection but he is due to give a culture sample in a couple of days as well as bloodwork and an xray. I am hoping this can give us some example of where he is at as far as is lungs go. Would we be able to call to find out if anything showed up or are we not allowed to do those things? I don't fully trust this new doctor but since the province we live on is an island and this is the only CF clinic in the province, this the only one he can go to until we get more stable in life and can move.

 

[GrantsWife]

Thanks but they honestly couldn't tell if it was an actual drop or not.
The PFT percentage they used to do did not go by height, weight, age, gender, etc.

This is his first time seeing a result based on this so it was hard for them to know whether there was a significant drop or not since this is a percentage on a new scale versus the way they used to do it here. To me, I freaked out when I heard that because I assumed he would be in the hospital. Though they said the way the percentages were totaled before and the way they are now could technically come out to be the same percentage, if that somehow makes any sense?

I am very concerned that he could have an infection but he is due to give a culture sample in a couple of days as well as bloodwork and an xray. I am hoping this can give us some example of where he is at as far as is lungs go. Would we be able to call to find out if anything showed up or are we not allowed to do those things? I don't fully trust this new doctor but since the province we live on is an island and this is the only CF clinic in the province, this the only one he can go to until we get more stable in life and can move.

 

[GrantsWife]

Thanks but they honestly couldn't tell if it was an actual drop or not.
<br />The PFT percentage they used to do did not go by height, weight, age, gender, etc.
<br />
<br />This is his first time seeing a result based on this so it was hard for them to know whether there was a significant drop or not since this is a percentage on a new scale versus the way they used to do it here. To me, I freaked out when I heard that because I assumed he would be in the hospital. Though they said the way the percentages were totaled before and the way they are now could technically come out to be the same percentage, if that somehow makes any sense?
<br />
<br />I am very concerned that he could have an infection but he is due to give a culture sample in a couple of days as well as bloodwork and an xray. I am hoping this can give us some example of where he is at as far as is lungs go. Would we be able to call to find out if anything showed up or are we not allowed to do those things? I don't fully trust this new doctor but since the province we live on is an island and this is the only CF clinic in the province, this the only one he can go to until we get more stable in life and can move.

 

[Havoc]

Looking at percents is not preferred. A lot of centers are giving out the raw numbers rather than percent predicted. It's much more of an accurate picture as far as your FVC and FEV1 as well as FEV25/75 over a period of time

 

[Havoc]

Looking at percents is not preferred. A lot of centers are giving out the raw numbers rather than percent predicted. It's much more of an accurate picture as far as your FVC and FEV1 as well as FEV25/75 over a period of time

 

[Havoc]

Looking at percents is not preferred. A lot of centers are giving out the raw numbers rather than percent predicted. It's much more of an accurate picture as far as your FVC and FEV1 as well as FEV25/75 over a period of time

 

[GrantsWife]

What percentage should he be aiming for if he is 128lbs, 5 foot 6 inches, white, and 20 years old? Is there anyway to find this out?

 

[GrantsWife]

What percentage should he be aiming for if he is 128lbs, 5 foot 6 inches, white, and 20 years old? Is there anyway to find this out?

 

[GrantsWife]

What percentage should he be aiming for if he is 128lbs, 5 foot 6 inches, white, and 20 years old? Is there anyway to find this out?

 

[hbollotte]

I think the both of you need to sit with the doctors and really talk about CF and understand it more. Ask questions when you don't understand something. Call the nurse and find out. I know my center is there to help whenever I need it or have a question.

About the drops in PFT's. My FEV1 dropped 20% from April to July. I was put on a round of Cipro and Bactrim two weeks ago and am going back to the Dr. on Wednesday. It's a two and a half hour drive for me to get to my clinic, but I never mind going back so quickly. If my numbers don't improve they will put me on IV antibiotics. I'm 27, 5 foot, and 110 lbs, and I don't know exactly where my PFT's should be, but I know they had never been as low as they were two weeks ago.

Good luck with everything and I hope you get some answers.

 

[hbollotte]

I think the both of you need to sit with the doctors and really talk about CF and understand it more. Ask questions when you don't understand something. Call the nurse and find out. I know my center is there to help whenever I need it or have a question.

About the drops in PFT's. My FEV1 dropped 20% from April to July. I was put on a round of Cipro and Bactrim two weeks ago and am going back to the Dr. on Wednesday. It's a two and a half hour drive for me to get to my clinic, but I never mind going back so quickly. If my numbers don't improve they will put me on IV antibiotics. I'm 27, 5 foot, and 110 lbs, and I don't know exactly where my PFT's should be, but I know they had never been as low as they were two weeks ago.

Good luck with everything and I hope you get some answers.

 

[hbollotte]

I think the both of you need to sit with the doctors and really talk about CF and understand it more. Ask questions when you don't understand something. Call the nurse and find out. I know my center is there to help whenever I need it or have a question.
<br />
<br />About the drops in PFT's. My FEV1 dropped 20% from April to July. I was put on a round of Cipro and Bactrim two weeks ago and am going back to the Dr. on Wednesday. It's a two and a half hour drive for me to get to my clinic, but I never mind going back so quickly. If my numbers don't improve they will put me on IV antibiotics. I'm 27, 5 foot, and 110 lbs, and I don't know exactly where my PFT's should be, but I know they had never been as low as they were two weeks ago.
<br />
<br />Good luck with everything and I hope you get some answers.

 

[Futant3]

It seems that a lot of the adult centers are moving away from using percentages and going with raw numbers instead. Part of the reason is that there are multiple algorithms for calculating the predicted numbers so you can end up with different percentages using the exact same input numbers.

To my knowledge all of those equations take into account things like height, weight, gender, and age. In his records they should have all those previous raw numbers and not just the calculate percentages. Raw numbers would be very easy to compare and give you an idea if this is a big change for him. I'd definitely be questioning why they can't make a comparison to old raw number data.

 

[Futant3]

It seems that a lot of the adult centers are moving away from using percentages and going with raw numbers instead. Part of the reason is that there are multiple algorithms for calculating the predicted numbers so you can end up with different percentages using the exact same input numbers.

To my knowledge all of those equations take into account things like height, weight, gender, and age. In his records they should have all those previous raw numbers and not just the calculate percentages. Raw numbers would be very easy to compare and give you an idea if this is a big change for him. I'd definitely be questioning why they can't make a comparison to old raw number data.