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Support for people with interstitial lung disease
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kujane



Joined: 21 Feb 2005
Posts: 14
Location: tulsa, ok

Post Posted: Tue Mar 01, 2005 7:31 am Reply with quote    Back to top    

I would be interested in information on the DLCO test. I had a difficult time doing that particular test, but understand it is an important test for IPF patients. Can anyone offer some information? thank you. kujane
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Randi Free



Joined: 28 Dec 2002
Posts: 107

Post Posted: Tue Mar 01, 2005 7:38 am Reply with quote    Back to top    

DLCO is part of the pulmonary function test. It shouldn't be any more difficult to get that reading than any of the others. My mother's DLCO reading in 1988 was 55%. It has gradually decreased over the years. Her last reading was 37% but it has gone as low as 22%. It is common for it to fluctuate.

Randi
quote="kujane"]I would be interested in information on the DLCO test. I had a difficult time doing that particular test, but understand it is an important test for IPF patients. Can anyone offer some information? thank you. kujane[/quote]
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strayze
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Joined: 22 Dec 2002
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Post Posted: Tue Mar 01, 2005 10:30 am Reply with quote    Back to top    

DLCO can be difficult to measure if one cannot attain a certain volume in breathing in the mixture of air and carbon monoxide. This volume needs to be near the volume breathed in in the TLC test, which is usually conducted with a mixture of air and helium, and done immediately before the DLCO measurement. On the same instrument, properly maintained, a 15 % variation of DLCO actual results would mean that the DLCO has not significantly changed from previous reading. Actual results are the readings with units attached, not the percent of normal.

Of the PFT readings, DLCO is the most highly variable BETWEEN instruments, even instruments at the same institution. Mine have varied a lot depending upon where they were measured, even within the same institution. They are consistent though with the very same macine within an institution. Then there is the percent of normal calculation, for which the algorithms and the assumptions contained therein, can vary from institution from institution.

I have run across difficulty in attaining the requisite volume needed for DLCO measurement when I'm pretty wiped out from the PFT measurements. If a test has to be repeated a lot, that contributes to my wiped out situation, and it gets to the point that I cannot fully inhale without coughing, which messes up the DLCO measurement.

Hope my experience helps a little.

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strayze
IPF-UIP by VATS at Hopkins, 8/00
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Severe symptoms 12/99
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br6633



Joined: 23 Dec 2002
Posts: 1364
Location: A Proud Canadian, Living In Canada

Post Posted: Tue Mar 01, 2005 10:57 am Reply with quote    Back to top    

I've had a least 2 sets of PFT's done each year in the past 4 and 1/2 years.The last time (in Dec) the tech decided that I didn't need to do the diffusing capacity test because I would find it too hard to tolerate. She said doc would be able to get enough info from the lung volumes and spirometry testing. She made a note that my breathlessness was a factor in the poor results on the other tests.
I saw the respirologist that same day and I asked for oxygen RX so I could use it for exertion.....he had no problem giving me the script.
When I did the dlco in June/04 it was 36.
The resp.tech that tested me in Dec. is my favorite tech...she lets me breathe in and out to get the baseline and decide for myself when to take "the big breath in" etc. I find that when the other techs tell me "when" it always seems like I'm not ready.....although I've done "well" on the tests.
A change I've made is that I will no longer go in the testing room that just has the body box....I found in June that it was too warm and stuffy for me (although I had been in there before and didn't find it that way). The clip was sliding down my nose and I was feeling over-heated. You sit in the box and do the tests and when it comes to the one that you need to do in the box they shut the door on the box. Maybe the top of the box is making it hard for the air to circulate from the air conditioning system. Anyway I have requested they don't schedule me in that testing room anymore. In the other rooms there is more equipment so you don't go in the box until you need to for the one specific test. Sorry this is so long-winded.

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~~Kathy~~
~07/98 SOB/COUGH~06/00 UIP/IPF DX/VATS~
~12/04 O2~12/06 CT/UP TO MY APICES IN IPF~
~07/08 PALLIATIVE CARE~
“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.”
William Arthur Ward
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lohrewok



Joined: 13 Nov 2004
Posts: 104
Location: kansas

Post Posted: Tue Mar 01, 2005 12:30 pm Reply with quote    Back to top    

Sorry this is so long-winded.[/quote]

No pun intended right? Very Happy Interesting info though. Thanks.
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kujane



Joined: 21 Feb 2005
Posts: 14
Location: tulsa, ok

Post Posted: Tue Mar 01, 2005 3:11 pm Reply with quote    Back to top    

thanks to strayze and br6633 you both addressed problems I experienced during last pulmonary function test. Since it was the last test I too had difficulty attaining the volume required, strayze, then started coughing, so had to repeat the test .
br6633, I'm finding out the technican who administers the test has alot to do with how well I do. This was good information and makes me feel better as I had gone down 13% (according to the technican who I don't think should have told me that) but my pulmonary dr. said little change from the last test a year ago.
So the percent is not the important measure, if I understand you right br6633. Again thanks for the response. kujane

dx3/04 open lung biopsy.
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kujane



Joined: 21 Feb 2005
Posts: 14
Location: tulsa, ok

Post Posted: Tue Mar 01, 2005 3:14 pm Reply with quote    Back to top    

strayze it was your message that had the information on percent , so thanks to you for providing it. kujane
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MargeKay



Joined: 08 Jul 2004
Posts: 48

Post Posted: Tue Mar 01, 2005 3:59 pm Reply with quote    Back to top    

What I would like to know is: How low does the DLCO have to be before one is at end-stage?

Put another way: how low is it when someone is dying?

Anyone out there know?

MargeKay

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pat



Joined: 31 Dec 2002
Posts: 1721
Location: Maryland

Post Posted: Tue Mar 01, 2005 6:06 pm Reply with quote    Back to top    

Marge Kaye,
Your DCLO can get so low that they can't report it. Mine was that low before I had my transplant and here I am 4+ years later.
Pat

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MargeKay



Joined: 08 Jul 2004
Posts: 48

Post Posted: Tue Mar 01, 2005 11:43 pm Reply with quote    Back to top    

Thank you for your reply Pat. I hadn't been able to find information related to those questions anywhere.

MargeKay

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br6633



Joined: 23 Dec 2002
Posts: 1364
Location: A Proud Canadian, Living In Canada

Post Posted: Wed Mar 02, 2005 7:45 am Reply with quote    Back to top    

Just wanted to add that my respirologist has said many times he looks for a trend in the test results over time rather than one particular result. Also kujane, you can ask for the tech. to print out a copy of the test results if you wish. As far as comparing dlco #'s, it's the same as anything else...some people can do more with less. Alot of things factor in such as conditioning, weight, other health problems, etc.

Personally, I'm at the point where I'm rather tired of doing the PFT's as it seems so pointless... in my case, I think of it only as a measure of my decline. I'm sorry for sounding negative.


Sorry this is so long-winded.[/quote]

No pun intended right?
lohrewok, it's easy to be long-winded when the fingers are doing the talking! Laughing

_________________
~~Kathy~~
~07/98 SOB/COUGH~06/00 UIP/IPF DX/VATS~
~12/04 O2~12/06 CT/UP TO MY APICES IN IPF~
~07/08 PALLIATIVE CARE~
“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.”
William Arthur Ward
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T



Joined: 26 Dec 2002
Posts: 1080
Location: southwestern Indiana

Post Posted: Wed Mar 02, 2005 8:39 am Reply with quote    Back to top    

I know my doc puts more emphasis on the DLCO than on almost anything. So long as gases are being diffused, then your lungs are working--at least a little. He, too, looks for trends.
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billfl



Joined: 23 Dec 2002
Posts: 36
Location: central Florida

Post Posted: Wed Mar 02, 2005 10:09 am Reply with quote    Back to top    

Kathy....I agree with you....for me the PFT's seem rather pointless now. I know that I'm declining, I'm on O2, and when I asked the pulmonologist what was the benefit of another PFT, he was unable to answer. Since he does the PFT's in his office I can't help but wonder if his motivation is other than checking on my health. My last PFT was in May of 2004, and I guess that I'll have another one this fall as I am courious about the numbers.
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JerryX



Joined: 22 Dec 2002
Posts: 114
Location: California

Post Posted: Wed Mar 02, 2005 12:21 pm Reply with quote    Back to top    

br6633 & billfl, I feel as you do about PFTs. Before my last test I had been on a diet and had lost 15 lb. and I was exercising daily and getting around and breathing better than I had for many months. I felt like a million bucks. I went in for a PFT which revealed a significant decline over this period of my physical improvement and it just took the wind out of my sails. My upbeat spirit melted away, my enthusiasm for dieting and exercise evaporated. I stopped dieting and exercising and felt like, "what's the point?" This lasted for a few months, but I'm now getting it back together and starting to move forward again. I've concluded that I would stop seeing the Pulmonary Dr. who only monitors my slow decline but cannot do anything about it and he seems poorly equipped to deal with colds, flu, or even minor respiratory infections that exacerbate my condition. In the future I will see an internist who is knowledeable in general medicine, skip the PFTs every 60days, manage my general health and concentrate on feeling good within my body and not worry so much about how it looks on paper.
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br6633



Joined: 23 Dec 2002
Posts: 1364
Location: A Proud Canadian, Living In Canada

Post Posted: Thu Mar 03, 2005 7:17 am Reply with quote    Back to top    

JerryX, you have a point, it's how you feel that's so important. Motion is the "lotion" that helps us most...corny I know Wink

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~~Kathy~~
~07/98 SOB/COUGH~06/00 UIP/IPF DX/VATS~
~12/04 O2~12/06 CT/UP TO MY APICES IN IPF~
~07/08 PALLIATIVE CARE~
“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.”
William Arthur Ward
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