Re: Re: Explaining numbers...

[Guest guest]

consistency is important

that's why mine are done at the same place every time

i forgot about one variable -- the technician

do my results change as the technician changes?

another variable -- the specific machine -- the PFT room has several machines -- is the calibration and whatever else identical with each machine

as i stated earlier, i compare the results and have learned to look at the trends

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Explaining numbers...To: Breathe-Support Date: Thursday, December 10, 2009, 8:58 PM

StefaniAlso as Beth implied, the percentages are based on what theyconsider normal based on your age, height, sex and ethnicity anddepending on where and the software weight.Just looking at FVC, Beth is expected to pull 3.04 liters but I'mexpected to pull 4.88. So, at 1.84 I'm at only 37% of normal and at 1.46she is at 48%.If suddenly you have an abnormally bad reading but it seems illogicalbased on how you feel and your saturation and oxygen usage, it may justbe the test so don't panic. On the other hand, if suddenly you have agreat reading that makes no sense, don't overreact. I had one FVC at 30%while all the others have been 36% or better. Fortunately, I didn'tpanic over it. On the other hand I had a DLCO at 51% once and no othershave been over 42% with the last two at 35 and 34. So, I didn't suddenlyjump up and down with the 51% and say I'm improving. I knew from

mysaturations how I stood.>> Stefani,> This is a good if confusing topic. I'm not at all sure howeverwhat a "PF Number". It's not a term I've ever heard before and I'mreasonably certain that nne was referring to one of the numbersfrom her PFT, possibly her DLCO or her TLC. Without knowing whatthat "28" is referring to it's impossible to say what it means.> I have PFT's every three to six months. For me there are two numbersthat are the most significant. Remember though these are the numbersthat are most important to me, that may be different for someone else.> Those numbers are the FVC and the DLCO. The FVC measuresÂ

myability to physically pull air into my lungs. According to my readout awoman of my age, my weight etc should be able to pull 3.04liters of air when I inhale. I can pull in 1.46 liters or 48% ofwhat is expected.>> The DLCO measures the ability of my lungs to transfer oxygen from mylungs to my bloodstream. THe explanation of how they measure theDLCO is complex and I know I can't explain it coherently. Suffice forthe present to say that my DLCO is 9.2 mL/mmHg/min or 45% ofexpected. This means that my lungs transfer oxygen to my bloodstreamwith less than half the efficiency of a normal woman my age.>> The numbers that are most likely to change after a round of rehab arethe numbers like the FVC that measure how well you can physicallymove air in and out. The DLCO is the least likely to change withexercise.>> Now all that said, we have to take the

numbers from a single test witha grain of salt. These tests are best looked at in terms of trends.Whether you are trending down or remaining stable. There can also beflukey tests with weird results. Back in September I had a DLCO that was34% of expected out of no where. I felt the same, was using the sameamount of oxygen etc etc. The doctor told me not to panicand had me come back in two months for another pft. This time I wasright back where I had been at 45%. Shrug....the DLCO can fluctuatesometimes and you can take the test on a Tuesday and then again on aThursday and get different results. As I said, these are best looked atin groups.... so you can see progression or stability over time.>> Hope that makes some sense!> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>> ____________

_________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Thu, December 10, 2009 7:48:21 PM> Subject: Explaining numbers...>> Â> Beth or Bruce ->> In our discussion about going into the store without oxygen, but usingbreathing and pacing strategies, nne stated that she was at 28% PF.I take this as a percentage she got from her Pulmonary FunctionTests(PFTs). I am not sure what it is and was asking so I thought Iwould start a new thread to discuss what the numbers mean. I was told mylungs are functioning at 85%. Would that mean my PF number is 15%? Likemany who are relatively new (I am new this year anyway), I do not knowthe

significance of the numbers other than on the 6 minute walk test mydistance improved after 4 weeks of pulmonary rehab. Overall, my coughcalmed down and my breathing became more controlled with strategies andexercise (both aerobic and anaerobic). I have all kinds of PFTprintouts, but don't know what the most significant numbers are. I keepthem so I can present them to doctors. I have saved having twoadditional tests (within 2 weeks) and 2 CT scans (within 2> weeks). The assumption when you go into a doctors office is that you(1) do not have the required tests OR (2) the doctor doesn't want tohave to learn how to use a viewer for CT scans OR (3) they do not"trust" results from another source. The call should be yours. There aretimes when I did not trust PFTs and was more than glad to have new onesrun.>> Stefani 61 year old Utahn (moved here from MN)> ILD 2/2006, NSIP (fibrotic)

10/2009, Diabetes II 2/2006, Sleep Apnea4/2009>

[Guest guest]

nne,

Thanks. I figured it was one of the numbers from your pft. An FVC that is 28% of expected is definitely low but as you said, it's just a number. What matters is how well you can function on a daily basis.

I'm so happy you are having such a good experience in rehab. I've been through rehab twice now. Once in NY in 2006 and this year here at Duke in NC. The difference a decent pulmonary rehab program can make is remarkable isn't it?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, December 11, 2009 8:46:28 AMSubject: Re: Explaining numbers...

Hi Beth,I was referring to PFT and it is the FVC that was measured at 28% according to pulmodudette at NY Presbyterian, sorry for any confusion. But all I can say is, it is just a number- the change in my activity level and SOB has been so dramatic over the past 4 weeks.nne,56, Fibrotic NSIP 6/09, Sjogrens, RA and polimyolitis 11/09.>> Stefani,> This is a good if confusing topic. I'm not at all sure however what a "PF Number". It's not a term I've ever heard before and I'm reasonably certain that nne was referring to one of the numbers from her PFT, possibly her DLCO or her TLC. Without knowing what that "28" is referring to it's impossible to say what it means. >

I have PFT's every three to six months. For me there are two numbers that are the most significant. Remember though these are the numbers that are most important to me, that may be different for someone else.> Those numbers are the FVC and the DLCO. The FVC measures my ability to physically pull air into my lungs. According to my readout a woman of my age, my weight etc should be able to pull 3.04 liters of air when I inhale. I can pull in 1.46 liters or 48% of what is expected. > > The DLCO measures the ability of my lungs to transfer oxygen from my lungs to my bloodstream. THe explanation of how they measure the DLCO is complex and I know I can't explain it coherently. Suffice for the present to say that my DLCO is 9.2 mL/mmHg/min or 45% of expected. This means that my lungs transfer oxygen to my bloodstream with less than half the efficiency of a normal woman

my age.> > The numbers that are most likely to change after a round of rehab are the numbers like the FVC that measure how well you can physically move air in and out. The DLCO is the least likely to change with exercise. > > Now all that said, we have to take the numbers from a single test with a grain of salt. These tests are best looked at in terms of trends. Whether you are trending down or remaining stable. There can also be flukey tests with weird results. Back in September I had a DLCO that was 34% of expected out of no where. I felt the same, was using the same amount of oxygen etc etc. The doctor told me not to panic and had me come back in two months for another pft. This time I was right back where I had been at 45%. Shrug....the DLCO can fluctuate sometimes and you can take the test on a Tuesday and then again on a Thursday and get different results. As I said,

these are best looked at in groups.... so you can see progression or stability over time. > > Hope that makes some sense!> Â > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â > Â > > > > > ____________ _________ _________ __> From: Stefani <sfshaner@.. .>> To: Breathe-Support@ yahoogroups. com> Sent: Thu, December 10, 2009 7:48:21 PM> Subject: Explaining numbers...> > Â > Beth or Bruce -> > In our discussion about going into the store without oxygen, but using breathing and pacing strategies, nne stated that she was at 28% PF. I take this as a percentage she got from her Pulmonary Function

Tests(PFTs). I am not sure what it is and was asking so I thought I would start a new thread to discuss what the numbers mean. I was told my lungs are functioning at 85%. Would that mean my PF number is 15%? Like many who are relatively new (I am new this year anyway), I do not know the significance of the numbers other than on the 6 minute walk test my distance improved after 4 weeks of pulmonary rehab. Overall, my cough calmed down and my breathing became more controlled with strategies and exercise (both aerobic and anaerobic). I have all kinds of PFT printouts, but don't know what the most significant numbers are. I keep them so I can present them to doctors. I have saved having two additional tests (within 2 weeks) and 2 CT scans (within 2> weeks). The assumption when you go into a doctors office is that you (1) do not have the required tests OR (2) the doctor doesn't want to have to learn how to use a viewer for CT scans OR (3) they do

not "trust" results from another source. The call should be yours. There are times when I did not trust PFTs and was more than glad to have new ones run. > > Stefani 61 year old Utahn (moved here from MN)> ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>

[Guest guest]

bruce

it has taken me a long time to get the hang of it

in the beginning i would be wiped out afterwards

now i am just exhausted

plus each technician teaches you a slightly different technique

i don't have to blow as hard as i used to and can still get decent results

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Explaining numbers...To: Breathe-Support Date: Friday, December 11, 2009, 9:58 AM

PinkIt's not likely given the controlled environment that the technicianimpacts it but I have experienced some technicians more diligent tryingto get a better score than others. Some days even they appear to me todo it the extra time to see if you do better. However, I think thedifference in us from day to day or hour to hour influences it more inthose situations.But as you stated a graph of trends and then weighing what the PFT's sayversus what you already know. I knew this week that I was requiring moreoxygen and my saturations were down. My PFT's turned out to be down sothey made sense. Had they been up, I would have known I'd just done agood job of taking them. I do know I'm much better at the testingprocedure today than I was the first time or two.> >> > Stefani,> > This is a good if confusing topic. I'm not at all sure however> what a "PF Number". It's not a term I've ever heard before and I'm> reasonably certain that nne was referring to one of the numbers> from her PFT, possibly her DLCO or her TLC. Withoutknowing what> that "28" is referring to it's

impossible to say what it means.> > I have PFT's every three to six months. For me there are two numbers> that are the most significant. Remember though these are the numbers> that are most important to me, that may be different for someone else.> > Those numbers are the FVC and the DLCO. The FVC measures my> ability to physically pull air into my lungs. According to my readouta> woman of my age, my weight etc should be able to pull 3.04> liters of air when I inhale. I can pull in 1.46 liters or48% of> what is expected.> >> > The DLCO measures the ability of my lungs to transfer oxygen from my> lungs to my bloodstream. THe explanation of how they measure the> DLCO is complex and I know I can't explain it coherently. Suffice for> the present to say that my DLCO is 9.2 mL/mmHg/min or45% of>

expected. This means that my lungs transfer oxygen to my bloodstream> with less than half the efficiency of a normal woman my age.> >> > The numbers that are most likely to change after a round of rehabare> the numbers like the FVC that measure how well you can physically> move air in and out. The DLCO is the least likely toÂchange with> exercise.> >> > Now all that said, we have to take the numbers from a single testwith> a grain of salt. These tests are best looked at in terms of trends.> Whether you are trending down or remaining stable. There can also be> flukey tests with weird results. Back in September I had a DLCO thatwas> 34% of expected out of no where. I felt the same, was using thesame> amount of oxygen etc etc. The doctor told me not topanic> and had me come back in two

months for another pft. This time Iwas> right back where I had been at 45%. Shrug....the DLCO can fluctuate> sometimes and you can take the test on a Tuesday and then again on a> Thursday and get different results. As I said, these are best lookedat> in groups.... so you can see progression or stability over time.> >> > Hope that makes some sense!> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >> >> > ____________ _________ _________ __> > From: Stefani sfshaner@> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, December 10, 2009 7:48:21 PM> > Subject: Explaining numbers...> >> > Â> > Beth or Bruce -> >> > In

our discussion about going into the store without oxygen, butusing> breathing and pacing strategies, nne stated that she was at 28%PF.> I take this as a percentage she got from her Pulmonary Function> Tests(PFTs). I am not sure what it is and was asking so I thoughtI> would start a new thread to discuss what the numbers mean. I was toldmy> lungs are functioning at 85%. Would that mean my PF number is 15%?Like> many who are relatively new (I am new this year anyway), I do not know> the significance of the numbers other than on the 6 minute walk testmy> distance improved after 4 weeks of pulmonary rehab. Overall, my cough> calmed down and my breathing became more controlled with strategiesand> exercise (both aerobic and anaerobic). I have all kinds of PFT> printouts, but don't know what the most significant numbers are. Ikeep> them

so I can present them to doctors. I have saved having two> additional tests (within 2 weeks) and 2 CT scans (within 2> > weeks). The assumption when you go into a doctors office is that you> (1) do not have the required tests OR (2) the doctor doesn't want to> have to learn how to use a viewer for CT scans OR (3) they do not> "trust" results from another source. The call should be yours. Thereare> times when I did not trust PFTs and was more than glad to have newones> run.> >> > Stefani 61 year old Utahn (moved here from MN)> > ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea> 4/2009> >>

[Guest guest]

Would any of you say that my numbers are "stable"?

11/19/09 09/25/09 %dif 05/21/09 %dif 10/17/08 %dif

FVC 1.32 1.28 -4 1.30 -2 1.43 8

FEV1 0.95 1.10 15 0.97 2 1.20 26

FEV1/FVC 72 86 19 75 4 84 16

PEFR 1.91 2.22 16 1.74 -9 3.32 73

FEF25-75 0.69 1.40 102 0.58 -16 1.58 128

SVC 1.15 0.93 -20 1.38 20 0.98 -15

TLC 1.69 2.06 21 1.93 14 2.84 68

RV 0.37 0.78 110 0.55 48 1.86 402

RV/TLC 22 38 72 28 27 65 195

DLCO 4.36 4.02 -8 3.59 -18 5.60 28

DLCO(Hb) 4.36 4.02 -8 3.59 -18 5.60 28

VA(BTPS) 1.46 1.78 21 1.47 <1 2.00 36

DLCO/VA 2.99 2.26 -25 2.44 -19 2.80 -7

Could anibody explain my numbers, I feel like its been stable since MAY, but I dont know for sure.

Help please!

Subject: Re: Explaining numbers...To: Breathe-Support Date: Friday, December 11, 2009, 10:27 AM

MBGreat explination but here is a little more, FVC Forced Vital Capacity How much we can inhale, how big we can expand our lungs. DLCO is the Diffuseing Capacity for Carbon Monoxide in the lungs. I order to test how well we can move oxygen, they have us inhale a measured amount of CO and hold it and then measure how much is left in what we exhale. This shows how well we are "moving" o2 from our lungs to our bloodstream. I also watch the FEV1 which is the Forced Expiritory Volumn or how much you can exhale as it is harder to exhale everything when the lungs are getting stiffer. My FVC in Nov at NJH was 58%, my FEV1 was 67% and my DLCO was 38% of normal for a woman my age and size. I was excited because the DLCO is the same from last year. The year before I had dropped from 55% to 38% so I feel the Predisone is working.

Hope this helps everyone understand their numbers. The longer I have this disease the more I learn. I'm getting really good at reading my own CT' scan ha haDyane Phoenix>> Stefani,> This is a good if confusing topic. I'm not at all sure however what a "PF Number". It's not a term I've ever heard before and I'm reasonably certain that nne was referring to one of the numbers from her PFT, possibly her DLCO or her TLC. Without knowing what that "28" is referring to it's impossible to say what it means. > I have PFT's every three to six months. For me there are two numbers that are the most significant. Remember though these are the numbers that are most important to me, that may be different for someone else.> Those numbers are the FVC and the DLCO. The FVC measures my ability to

physically pull air into my lungs. According to my readout a woman of my age, my weight etc should be able to pull 3.04 liters of air when I inhale. I can pull in 1.46 liters or 48% of what is expected. > > The DLCO measures the ability of my lungs to transfer oxygen from my lungs to my bloodstream. THe explanation of how they measure the DLCO is complex and I know I can't explain it coherently. Suffice for the present to say that my DLCO is 9.2 mL/mmHg/min or 45% of expected. This means that my lungs transfer oxygen to my bloodstream with less than half the efficiency of a normal woman my age.> > The numbers that are most likely to change after a round of rehab are the numbers like the FVC that measure how well you can physically move air in and out. The DLCO is the least likely to change with exercise. > > Now all that said, we have

to take the numbers from a single test with a grain of salt. These tests are best looked at in terms of trends. Whether you are trending down or remaining stable. There can also be flukey tests with weird results. Back in September I had a DLCO that was 34% of expected out of no where. I felt the same, was using the same amount of oxygen etc etc. The doctor told me not to panic and had me come back in two months for another pft. This time I was right back where I had been at 45%. Shrug....the DLCO can fluctuate sometimes and you can take the test on a Tuesday and then again on a Thursday and get different results. As I said, these are best looked at in groups.... so you can see progression or stability over time. > > Hope that makes some sense!>  > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > >

> > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Thu, December 10, 2009 7:48:21 PM> Subject: Explaining numbers...> > Â > Beth or Bruce -> > In our discussion about going into the store without oxygen, but using breathing and pacing strategies, nne stated that she was at 28% PF. I take this as a percentage she got from her Pulmonary Function Tests(PFTs). I am not sure what it is and was asking so I thought I would start a new thread to discuss what the numbers mean. I was told my lungs are functioning at 85%. Would that mean my PF number is 15%? Like many who are relatively new (I am new this year anyway), I do not know the significance of the numbers other than on the 6 minute walk test my distance improved after 4 weeks of pulmonary rehab. Overall, my cough calmed down and

my breathing became more controlled with strategies and exercise (both aerobic and anaerobic). I have all kinds of PFT printouts, but don't know what the most significant numbers are. I keep them so I can present them to doctors. I have saved having two additional tests (within 2 weeks) and 2 CT scans (within 2> weeks). The assumption when you go into a doctors office is that you (1) do not have the required tests OR (2) the doctor doesn't want to have to learn how to use a viewer for CT scans OR (3) they do not "trust" results from another source. The call should be yours. There are times when I did not trust PFTs and was more than glad to have new ones run. > > Stefani 61 year old Utahn (moved here from MN)> ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>

[Guest guest]

, Ask your technician giving your PFTs to print you out a continuous chart of your results. Their software should allow for a printout going back as far as your first tests. My PFT chart each time starts from the present and goes back to my first visit to Tulane in 05. You can tell at a glance how well your lungs are working. It may be in either a bar chart form or straight line form. Most likely your past and present numbers can be printed in a straight line graph. I find this easier than looking at individual numnbers.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.