What does it look like when the FVC / FEC drop to 50%?

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Just A Guy

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CALS
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I read that one should consider using a ventilator when the FVC / FEC drop to 50% or lower. But what does it look like. How does the patient breathe when the FVC / FEC are this low. I'm asking because my dad has stopped going to the neurologist and doing all these tests. He says there's nothing beneficial from going there.

Also what are the normal FVC / FEC levels that a healthy person has? From what I understand, FVC is given as a percentage because it's a different value for everyone. So it should be 100% when healthy right?

Thank you for your time and help.
 
An average "healthy" person will have FVC of 80%
 
check with breathing theripist to see if he can do stacking air exersises they are very benifical
 
It can depend on how the lungs were before ALS, as to what helps most. My husband was at ~60% long before ALS. Breath stacking was never an option for him. Though you will find BiPAP settings for deep breaths (high IPAP, low EPAP) most often recommended in ALS, for some people, shallow breathing is more helpful than deep breathing. Down the road, a BiPAP, suction machine, CoughAssist and/or Vest will help but it doesn't have to be a neurologist who prescribes any of these -- a pulmonologist or internist is fully capable. So it may prove easier to fit in the lung stuff w/ non-ALS care, loosely speaking. It's more important for him to find a doc he gets along with than for that doc to be a neuro.

If your dad doesn't show any signs of hypercapnia (too much CO2, which is what most often builds up when breathing can't keep up with it) like headaches, sleepiness, irritability, and doesn't seem to have problems breathing/swallowing, I'd save your argument for when it matters later, when he does. And most people seem to overcome their aversion to medical offices when it counts.
 
If your dad doesn't show any signs of hypercapnia (too much CO2, which is what most often builds up when breathing can't keep up with it) like headaches, sleepiness, irritability, and doesn't seem to have problems breathing/swallowing.

A blood gas test is best way to test for CO2. Everybody is different. He may feel fine at 50% -- I did, but that was awhile ago. Hope this helps.
 
I should have asked if he was on a BiPAP -- I was reading "ventilator" too literally. It is true that if he snores, chokes, stops breathing during sleep, which you can listen for, then he should certainly be on one if he's at all interested in extending quality/length of his life.

A blood test for hypercapnia is an option as things progress but BiPAP is the first step if he is not yet on it since it could correct the first stages.
 
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