Old 07-13-2017, 07:11 PM #1 (permalink)
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Default First Pulmonary Test - how to understand?

Hi, My husband had his first pulmonary test,and I am trying to figure out what the headings mean: Ref, Pre, %Ref. There is also a column after Ref that gives a range of numbers.

I don't understand the numbers at all.

Thanks so much! I love the support that I have found here

Suzanne
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Old 07-13-2017, 09:44 PM #2 (permalink)
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Default Re: First Pulmonary Test - how to understand?

The most useful number to look at and compare to subsequent visits for gauging disease progression is the FVC % which is % of predicted Forced vital capacity. Look over the report again and try to find this.
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Old 07-14-2017, 08:45 AM #3 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Hi Bruce, Thanks so much. The FVC IS 80. I guess that's good!?
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Old 07-14-2017, 12:07 PM #4 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Yes. With an FVC at 80% he is in good shape and there is no intervention indicated. Some literature recommends overnight bipap starting as early as 75% and feeding tube at 65%. This will be up to the doctors managing his care.
Also, look up Stacked Breathing exercise, it should be a standard recommendation for all PALS.

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Old 07-14-2017, 01:23 PM #5 (permalink)
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Default Re: First Pulmonary Test - how to understand?

No disrespect, Bruce, but when I read "that [timing of BiPAP and/or feeding tube] will be up to the doctors managing his care," I feel we are being somewhat Pollyanna-ish. In practice, it is symptoms like feeling winded, headaches, increase in fatigue, etc. that don't always correlate with FVC or even MIP/MEP that should drive BiPAP, and it is on the P/CALS to be proactive in reporting symptoms and querying options.

Likewise, many PALS are told to get a tube well before they need one [e.g. my husband ate nearly 2y after being advised to get one] or that they can't have one later on, with respiratory impairment, when case literature suggests they can. We also see risky PEG surgery done because the center is inexperienced with RIGs or the clinic prefers to refer to gastros.

As we have also seen here, the ability to generalize these protocols is sparse because the natural history has evolved over time, and thus timing should really relate to the individual in a way that the clinic is not always able/inclined to operationalize.

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Old 07-14-2017, 02:51 PM #6 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Maybe when Bruce said it would be up to the doctors managing his care he meant just this - that the doctors seeing the PALS would be able to figure out the best timing rather than simply going by a test? Of course I could be wrong, but Bruce may have been spot on, even if he didn't word it so copiously and doesn't work in the industry
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Old 07-14-2017, 03:58 PM #7 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Hi All,
Thank you for all of your responses. I guess I'm confused that the doctor's report says:

Interpretation: All flow rates are reduced.
All lung volumes are reduced except TLC, ERV and RV which are increased.
DLCO is reduced.
NIF and PEP are reduced.

Impresssion: Very severely compromised insipatory and expiratory muscle strength with restrictive lung disease and air trapping with limited expiratory flow rates.

Thanks for any input !!! Greatly appreciated.

Suzanne
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Old 07-14-2017, 05:09 PM #8 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Suzanne, the FVC at 80% doesn't necessarily synch up with the other numbers you mention. So some of the others could merit the "severe" label.

If you want to post the full report, we could be more helpful. The FVC is just one measure of lung function, and it's always not the best one in ALS -- but it is commonly available.
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Old 07-14-2017, 05:23 PM #9 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Hi. I attached a file of the report.

Thank you!!

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Old 07-14-2017, 09:38 PM #10 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Suzanne, It looks like his breathing muscle strength is severely compromised. MVV is how much air you can move by breathing in and out quickly for 12 seconds and that is also low. Usually when breathing muscle strength weakens, RV goes up. As Laurie said, FVC really shouldn't be considered alone. Mine is all over the place. When I first tested in 2014, it was 68%. Now it is in the 70s. go figure.

At any rate, BiPap should make breathing much more comfortable and help expel CO2.

One of the things that concerns me here is that you were not given an explanation, line-by-line what the numbers meant. I say that because I got the same thing at two "Centers of Excellence." I had to ask Laurie and look things up online to understand what the numbers meant.

One thing Laurie always points out is how we feel (are we short of breath, tired, yawn a lot) carries as much weight, if not more, than any numbers. Also, numbers will change depending on effort, how a PALS feels on that day, and operator expertise.

I'm sure Laurie will give you a more thorough interpretation.
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Old 07-15-2017, 08:40 AM #11 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Hi Kim,
Thanks so much. We will see the pulmonologist at the end of September (3 months from our initial June visit).

One thing I have noticed but can't find anything online about it is that my husband has a brief coughing spells each night. I've searched but can't find any correlation to the disease. I'm hoping that's the case.

It is so great not to feel alone thanks to this forum. I know we are in the early(?) stage, but it is such a heavy and depressing weight to bear each day.

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Old 07-15-2017, 01:34 PM #12 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Has he been prescribed a BiPap yet? If not, I would recommend your calling your clinic, your neurologist or the pulmononogist and not wait for three months. Usually, you can get a BiPap quickly with a simple order from any treating physician. Go straight for a Trilogy.

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Old 07-15-2017, 02:21 PM #13 (permalink)
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Default Re: First Pulmonary Test - how to understand?

BiPAP is definitely suggested, and a hospital bed/good recliner or lift chair if he doesn't have one, to ensure that his body is in the best position for breathing while he sleeps and sits.

Both obstructive and restrictive disease are shown, along with some kind of pre-existing lung damage --any smoking, chemical exposures or known lung disease such as emphysema?

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Old 07-15-2017, 08:27 PM #14 (permalink)
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Default Re: First Pulmonary Test - how to understand?

Hi Kim and Laurie,
Thank you both so much for your replies.

No BiPAP was recommended and
my husband does not have a hospital bed or recliner or lift chair. There is no known pre-existing lung condition either - nothing ever with the lungs.

Does the night coughing mean anything?

I am so new to all of this. Diagnosis was only in February 2017.

Thank you !!!!

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Old 07-16-2017, 12:59 AM #15 (permalink)
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Default Re: First Pulmonary Test - how to understand?

What was the reason bipap was not recommended?

ALS breathing issues are also nothing to do with the lungs, what happens is the muscles used to breath are affected while the lungs themselves are fine.

Did you get everything about the test results explained to you?

Can you explain a little more what you mean by night coughing - when it happens, what helps it etc? What did the doctor say about this?
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