PFT results question.

Kleind

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My pals was diagnosed in 2018 with symptoms going back to 2013. Very slow progression. He has slurred speech, fasciculations and this week has his first PFT due to chocking and swallowing issues with constant coughing. Spirometer results were all 80% e crept PEF which was 47. However, Respiratory muscle force PI was 36 and PE was 25. Drs said that was an indication his diaphragm muscles were weak. So, what exactly does that mean for the future?? They are giving him a cough assist machine but said his breathing was good for now. Does breathing get worse with muscle deterioration? What should we expect?
 

KimT

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Yes, if muscles that are used for breathing weaken, breathing will get more difficult. MEP with low numbers could mean your PALS might be retaining C02 because he is unable to blow out air. Since his other numbers were above 80, did he get tested lying down? That's usually where muscle weakness causes a gap between sitting/standing FVC and FVC lying down.
 

Kleind

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Yes, if muscles that are used for breathing weaken, breathing will get more difficult. MEP with low numbers could mean your PALS might be retaining C02 because he is unable to blow out air. Since his other numbers were above 80, did he get tested lying down? That's usually where muscle weakness causes a gap between sitting/standing FVC and FVC lying down.
[/QUOTE

Thank you so much for your reply. They did not test him lying down only sitting up in a little cubicle. They did a blood gas test also and his oxygen was 93 and his CO2 was 4.0 which the test said was high if it was above 1.5 but they said his blood gas was fine. ( We asked for a copy of the results to keep in our files.)
 

lgelb

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If you are talking about MEP and MIP being 25/36, he qualifies for a BiPAP and should get one now. The Medicare criteria include MIP <60.

Best,
Laurie
 

Kleind

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If you are talking about MEP and MIP being 25/36, he qualifies for a BiPAP and should get one now. The Medicare criteria include MIP <60.

Best,
Laurie
Laurie,
There is nothing on his test results that says MEP or MIP. There is a category that says Respiratory Muscle Force. Under that are 4 categories, PI Max, PE Max, PI Volume and PE Volume. PI MAX is 36% and PE Max is 25. Is that the same thing? The other part of the test is Spirometer but everything there starts with an F.
 

lgelb

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Yes, those are equivalents. PI Max=MIP, PE Max=MEP.
 

Kleind

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Laurie,
There is nothing on his test results that says MEP or MIP. There is a category that says Respiratory Muscle Force. Under that are 4 categories, PI Max, PE Max, PI Volume and PE Volume. PI MAX is 36% and PE Max is 25. Is that the same thing? The other part of the test is Spirometer but everything there starts with an F.
Thank you for helping me understand this. He is a veteran so we use the VA. They don’t have an ALS clinic at this hospital so I’m concerned about how much experience they have with ALS patients.
 

lgelb

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There is a basic standard of care VA centers are supposed to have in ALS. But you are also allowed to seek care elsewhere if the Houston VAMC is not up to it, e.g. Baylor or Methodist, both of which have ALS clinics. Do you have a PVA rep? They can help you with that.
 

Kleind

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Yes, we have a PVA rep and he was great at getting my husband approved but now doesn’t answer or return my calls. It seems like it is an uphill fight for everything. We contacted Dr Appel at Methodist and they will require my husband to go through lots of testing before accepting him to clinic and he doesn’t want to be put through that again after years before a diagnosis.
 

Clearwater AL

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Kleind, are you calling him on the phone? The PVA reps have a lot on their plate handling
Viet Nam, Gulf War, Iraq war and Afghan Vets. Don't know your situation but I have never
spoke to my PVA rep by phone. We email.

Sometimes there is a gap before he gets back with me. They go to conferences and
meetings with VA. (which sometimes can stand for "Very Aggravating"). Anyway, if it's
phone calls go the Email route, text which maybe easier for him to get back with you.

Don't understand the situation with Dr. Apple and Methodist wanting to re-test if he
has a confirmed diagnosis with Diagnostic Code.

I use two... the VA and Wake Forest. The VA is and hour and half away, Wake is 45 minutes.
They both work with each other fine. I'm in a clinical trial at Wake.

I have always thought the VA was the pinnacle of bureaucracy. Hang in there.
I hope it all comes together for you. Again, bureaucracy.
 

Kleind

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Thank you so much for those suggestions. I will definitely give email a try.
Had I not insisted on copies of his test results I would have never known his PI and PE values as they said everything was fine. Now it appears that he should have been given a bipap. It makes me wonder how much these drs know about ALS patients. I am so grateful for everyone who is willing to share their knowledge and experience.
 

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When emailing - keep them concise and make your most important points and requests in the first paragraph.
Busy people today don't read every word or line in an email and the longer the email, the less they read.
Catching their attention at the start can be critical.
 

lgelb

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If Methodist is a hassle, what about Baylor?
Meanwhile, if you ask for a BiPAP rx, I can't think of what excuse could be used to deny you.
But also remember, any doc, e.g. an internist, can write that prescription.
 

KimT

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As Laurie said, any doctor can to the Rx for BiPAP. My local neuro/pain management doctor did mine. He didn't even have to prove that my numbers required it.
 
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