Pulmonary Question

I received the results of my lung function test yesterday. I passed with above average to average scores, with one exceptions. My DLCO was low @ 66% average being 29.00 and I scored a 19.12. The doctor said I'm good no lung problems at this time but can't explain or understand why I'm having shortness of breath on exertion. I have pneumonia back in May 2012 and it was pretty bad. The doctor missed it for 2 months prior to catching it on May. Now wants to send me to the Cardio doctor to talk about the right ventricle heart test. Doctor said he doesn't think the Cardio will agree that more testing is necessary as he doesn't think so either. But covering is back side since he dropped the ball on pneumonia. So my question is what does it mean to have a low DLCO test result and your opinion on the right ventricle test? Confused here a bit. My echo and EKG both were ok back in January 2012.

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I think I read that low DLCO, with normal results elsewhere in the test, could mean lung problems....someone on this list posted a "how to read PFT" document which I looked at. Maybe you could see a pulmonologist (lung doctor) to get more information. I have similar results to you, and that is what I am doing. When I contacted him, my rheumatologist asked me to see a pulmonologist and get a CT scan of the chest also. I am short of breath too, since bronchitis two months ago, and treated by PCP then. And it's not super dramatic, but I am tired all the time, perhaps you are similar... I also had pneumonia this year, in January 2012.

Seeing as how your doctor doesn't have any answers, why not seek another opinion? My respiratory tech who administered the (second) PFT (which showed decline from one month before) said that these numbers *could* be read as normal, but if you are not feeling well, no offense to the PCP, but maybe it's time to see the specialist.

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Hey Lilac no offense taking. I post with a very open opinion. I'm looking for second and third opinion for each of you that post to be able to make informed decision on what my doctors say. Most doctors I run across (even my specialist) are very closed minded to the proper treatment and/or direction to go with my scleroderma. I go see my rheumy the 24th of this month I am going to ask him for a referral to a different pulmonologist. I just don't like my current one at all, I don't think we are comfortable with each other.

BTW..love your name

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All my tests come back good...and normal..but yet, I too have shortness of breath, and have gotten PFT, EKG's, and everything we need...hearts says I have something in the left ventrical, but cardio doc, says nothing bad...but I have shortness of breath, also that comes and goes...It is so overwhelming!!! Pulmonolgist says all is okay also...I have MCTD...and there are just so many things that come and go...it's so hard to keep track.

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A DLCO below 80%, with a less than 80% FEV indicates interstitial lung disease.

A DLCO below 80%, with a MORE than 80% FEV indicates Pulmonary Hypertension.

In either case, you need to be seen in an advanced lung disease clinic.

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Hi, Jeminirose:

I am right there with you in your boat. My FVC (forced vital capacity) is 103% of predicted, but my DLCO runs between 71 and 75% of predicted. Amazingly enough, the more PFTs I go through, the marginally better my results get ... probably because I go in there nowadays prepared to blow my lungs right out if I have to to get good results!

Anyway, last summer I attended a lecture given by noted scleroderma researcher Dr. Virginia Steen. The lecture was called "The ABCs of Lung Disease" in scleroderma patients and covered all of the usual tests and what they mean. According to her, a low DLCO can indicate either lung fibrosis or PAH (pulmonary arterial hypertension). If your results are in the 80-100% of predicted range, you are considered normal. Results in the 70 to 80% of predicted range are considered slightly decreased, but not worrisome. Results between 60 and 70% of predicted are low and "need to be followed". Anything lower than 60% of predicted is considered very low ... and if I read her notes correctly, if your FVC is still normal at this point, you are at high risk for PAH.

In my case, I am considered to have "very mild" interstitial lung disease, but no scarring yet, which would explain why my FVC is still so good. I also have the anti-Scl70 antibody, even though I am definitely a limited scleroderma patient, which puts me at "higher" risk of fibrosis (most limited sclero people have the anti-centromere antibody which puts them at "higher" risk for PAH). But you can bet the docs make me get regular echocardiograms because of my lowered DLCO ... although so far, my echos have been quite normal. I just know they are worried that I may eventually wind up with BOTH ILD and PAH! Man, I have to tell you ... I sure hope that day is a loooooooong ways away!

BTW, even the scleroderma specialist who saw me this spring concurs with my pulmonologist that my lung problems aren't anywhere near bad enough to require treatment. But, you can bet they watch me like hawks ready to pounce! So far, shortness of breath has not been a problem for me ...

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My latest PFT Report:
FVC-3.78 = 103.0%, FEV 1-3.18 = 107%, FEV1/FVC-.84 = 105%, FEF 25/75-3.25 = 112.%, PEF 6.49, FET-6.74, VC MAX 3.83= 108%
IC-2.94=126%, ERV-.89=53%

TLC-5.31=102%, FRCPLETH-2.37=80%, RV-1.48=80%, RV/TLC-27.8=80%

R TOT-3.52=115%, SG TOT-.9= 92%

DLCO SB- 19.91=66.5%, DLCO/VA-4.04=98.5, VA-4.93, DLCOc 19.91=66.5%, DLCOc/VA-4.04=98.5, Hb-13.40

These are my current readings as of January 2012, since then I have a serve case of Pneumonia, a Bonchoscopy, Pneumothrax (collapsed lung). All of this and my Pulmonologist still tells me that my lungs are better than normal and there is no reason I should be having shortness of breath upon exertion of any kind. I also had an Echo & EKG done in January both came back good. He said he doesn't understand it, that is just can't be according to the readings and how the numbers adding up. I wish I understood these test results better so I could tell if the doctors is giving me a line of B/S or telling me the truth.

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Ok Help me understand this. I have limited sclero. no signs on bloodwork though. They are going by my appearance, small mouth tight skin red spots etc. Lung scarring was found accidently, no shortness of breath or anything. Definately mild scarring though. Second round of Pulm. testing done in Boston today. Have been on Cellcept for three months and was so sure that everything was going to be good. My DLCO went from the low 80s to 77 and i have read that a drop under 80 is a pointer toward a poorer prognosis. Doc said this isnt worrisome because they can fluctuate so easily and it was not that much of a drop. He increased my Cellcept 3 in morning and 3 at night. Im going to glow. Is that a normal dosage? Echo turned out good though so no PH. Is this bad that it dropped , the DLCO, or is it a mild drop?

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DLCO stands for "Carbon Monoxide Diffusing Capacity (lung function)". If it's reduced, it indicates likelihood that the alveolar (microscopic air sacs) walls are getting thickened with fibrosis, and so can't exchange gasses as efficiently as they should. Reduced DLCO is something scleroderma specialists watch for. I would think that at 66%, the doc would have ordered a high resolution CT scan to check for Interstitial lung disease (ILD) caused by scleroderma.

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I do have ILD, that was the first thing I found out. cT scan and lung biopsy, Yay. I know Im am obsessing about a number that isnt even that low compared to others and I dont want to seem insensitive. I just thought that I was for sure going to have not changed since i feel so good. Just a blip i guess..

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I kind of hesitate to mention this, Phoebe, as I'm not sure I understood exactly what my pulmonologist was trying to tell me at my last appointment. But for what it's worth, here goes:

I, too, have been a bit obsessive about my DLCOs being in the low 70s. So I was sitting in the doc's office asking him for the umpteenth time how my DLCO could be so low when I felt so good and didn't have shortness of breath. Well, I don't know about you, but my PFT printouts (which I religiously keep copies of) come with some graphs that illustrate the data. I remember the doc pointed to the graph that depicted the DLCO part of the test and said something to this effect: that it looked to him like I hadn't taken a deep enough breath at the start of the test ... and that the computer may have overcorrected for that when it printed out the result. So it is possible that your lowered DLCO could be just a "blip" like you say. I somehow don't think I'd worry until I kept getting low results after several tests for this reason. You know the old saying about computers: "garbage in, garbage out"!

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Morning

I have had 4 CT scans since May 7th, because of the pneumonia, 3 with dye and 1 without. The last one done July 23rd was a HS CT Scan finally. After almost beating it into my Pulmonologist head that I was only going to do another CT if he ordered it in HS. I went to his office just this past Monday for him to explain it to me. Now mind you that my pneumonia is gone (according to him) and all that is left is some heavy scaring from the infection of the pneumonia. He said my CT doesn't show ILD or Fibrosis but he wants to retake the HS CT in a year from now to look at the scaring of the pneumonia and he test the PFT in January, which will be a year from the last test. No answers to shortness of breath, I think I am going to talk this over with my Rheumy maybe I'll seek out a second opinion or change doctors altogether. This doctor just doesn't explain things enough, and is always nervous around me. Maybe he is just a nervous person, I just don't like a doctor that is not sure in what he is telling me.

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"Blips" on PFTs are absolutely common. A change 5% up or down are pretty common.

But.

If the DLCO never EVER gets above 80%, you have something that needs to be watched. Healthy people can have DLCOs up to 120%. Remaining in the 80% range is the VERY BOTTOM of the normal range. And if you have two PFTs which drop 5% or more each time, then you probably should have an appointment with a pulmonary doctor who understands scleroderma, or a rheumatologist who understands lung disease.

Dr Aryeh Fischer at National Jewish Hospital in Denver is working toward something called "Lung-dominant connective tissue disease," so that those of us who have overlap symptoms can find doctors who understand our diagnosis and treatment.

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