Pulmonary Function Test question

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nkrohan

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Hi all. My PALS just had his first pulmonary function test (attached). I am curious how to interpret it. His neuro gave him a quick call and said he qualifies for NI ventilation and that his number was 38%. While I am sure they will explain it at our next appointment in a couple months, trying to understand which number she was reading and what I should look at. My husband doesn't appear to have any major breathing issues yet - we are three years in from diagnosis, although I like to tell him he sounds much louder to me. I am also worried maybe he isn't sleeping as soundly as he needs to and just doesn't recognize the deficiency. Anyways, thoughts on which numbers are key on this test and what they might mean? She said he has good output bad input.
 

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Bestfriends14

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I cannot read the test as I do not know how. Having said that, 38% is on the low side of pulmonary function (95 to 120 is normal), and so he really should be on a NIV to preserve lung function and extend life. My husband, when he was at 38, seemed fine during the day but was building CO2 at night when he slept. This resulted in him being tired almost all the time and, as a result, he would nap for 3-4 hours each afternoon. Once on his NIV, those naps stopped and his energy came back. As his lung function deteriorates, he makes an awful moaning sound at night when he sleeps. However, I know with the NIV he is properly supported. Without having this support, his death would be hastened.

Please do not wait a couple of months until your next clinic appointment. Get him ventilated as soon as possible.

I hope my bit of info helped.

I'm sorry you are at this stage in progression.
 

lgelb

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He definitely qualifies for BiPAP (Medicare threshold is MIP<60 cm) .

It is important not to confuse the raw data (cm readings) vs. the predicted vs. actual %. It is not the case that 38% of predicted is normal. The amount of air moved in and out varies by age and height, and the actual reading for that in cm is shown in the lefthand column. So he is moving 47 cm in (it's a negative number because it's being breathed in) and 99 cm out. What that translates to in terms of what it should be for his age/height is the percentage on the column to the right of that.

So in reading a PFT it is critical to double-check the age and height shown at the top of the report. If they are wrong, the percentage of predicted result is wrong. While reimbursement would not be affected because Medicare looks at the raw number on the left, your interpretation would be.

So though the neurologist said good output bad input, they are both below 50% of predicted. Agree with Bestfriends, don't wait until his next appointment to get the BiPAP because it takes time once you get the ball rolling. The clinic can put in the order now.

The FVC and other numbers suggest that he may be using accessory muscles to compensate for the weakness of respiratory muscles, for now, but it is important to give his breathing just the right amount of support because use of accessory muscles is less effective over time.

Best,
Laurie
 
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nkrohan

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Thanks for the information, its very helpful! Its funny because my husband still can hike ten miles and sleeps on his stomach, and pretty much is probably more fit than most men his age (minus his arms and hands). I wonder if starting off so fit is why neither of us notice any breathing issues. I started to dig into why his FVC looks good but MIP isn't and decided its too complicated... Anyways, I will definitely pass the information on and hopefully we can get an appointment lined up to have his neurologist better explain to him what the results mean and he can make whatever decision it is that he wants to make.
 

KimT

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The reason your PALS qualifies for the machine is that the muscles that control breathing have weakened. I'm glad they tested MIP and MEP because I've been to clinics that just rely on FVC and SVC. This gives an incomplete picture of breathing in an ALS patient.

MIP means the strength of the muscles used to inhale. MEP means the strength of the muscles used to exhale.

I've had pulmonary function tests at four different places. Each one used a different parameter. I ended up, out of frustration, buying my own equipment and learning how to use it.

Also, time of day and fullness of stomach can hurt the numbers. If I do a breathing test first thing in the morning, all my numbers are higher. After a big meal or if I'm stressed, the numbers go way down.
 
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