PFT very low

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KrisHall7

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Joined
May 4, 2015
Messages
4
Reason
CALS
Diagnosis
11/2014
Country
US
State
Ga
City
Mcdonough
Hi! My dad was diagnosed with ALS almost a year ago and at his doctor's appointment this past Friday, his PFT score was a 1.8. I believe the doctor said that came out to 20%. I can't imagine how much longer he can continue with such a low score. Can anyone give me an idea of how long he could possibly have with breathing so low and has anyone else had a score this low and for how long? I know ALS is tricky and its hard to tell, but nobody ever gives us answers as far as how long he may have. Thanks in advance.
 
There are a few too many variables here, and we make no claims to be either doctors or prognosticators.
Such as how are his O2 sat and CO2 retention? Was an arterial blood gas drawn?
Is he on a Bipap (I certainly hope so)?
Does he wish to be invasively vented (trach plus Bipap/vent)?

Have his doctors mentioned hospice?

I am not really asking you to answer those questions, just offering them up to show how difficult a question this is ... 8^|
 
Thank you for replying and I don't mind answering your questions. He is on Hospice care. They don't tell us much either. He is on a Non invasive vent..but not as much as I'd like him to be. He tries to stay on it as much so possible but he says it isn't comfortable. In the beginning of his diagnosis he was on it much, much more. BUT the weird thing is, as his breathing gets worst, the harder it is for him to be on it...even though we have lowered the settings, he still says it feels as though it's too powerful. He doesn't wish to be on a vent. I'm not sure about his O2 and CO2 numbers. I unfortunately wasn't at his doctors appointment. I just know my mom said that when he did the pulmonary function test, all his numbers (breathing out and breathing in were below 2.) The doctor said he was concerned with his breathing..It just makes me wonder how he's able to breathe at all with numbers so low. A few months ago they numbers ranged from 16-20. I wish I knew more about the tests and what the numbers meant exactly to give u more answers.
 
Fvc is forced vital capacity...a measure of lung volume, mip is mean inspiratory pressure...a measure of how well his breathing muscles are working. Mep is mean expiratory pressure...it tells you how well his muscles that he exhales and coughs with are working.

I would say if he is more uncomfortable on the machine he may need the pressures, length of breath, amount of air increased. Laurie can answer more specific questions on this. Everytime my husband starts messing with his trilogy or saying he is having trouble, one of these 3 things needs to be adjusted
 
My Triolgy (BiPap) has my breathing Rx listed on it. If you could find your father's Rx possibly Laurie (our resident breathing specialist) can give it a once over, as Goosberry mentioned.
 
Kris, I'd be happy to suggest better settings for your dad's comfort. The current settings and the answers to the following questions would help:

What is uncomfortable? Pick all that apply
Breaths too long/short/switch from inhale to exhale too soon/late/switch from exhale to inhale too soon/late
When he breathes in, he feels like air flow is too much/little
When he breathes out, he feels like air flow is hard to blow against/that there is not enough to keep the airway open

It would also help to know more about the tests. "PFTs" is a general term and we don't know which test was 20%. Your mom should be able to get a copy of the results from clinic, and you can post them here. But if the 20% refers to FVC or SVC, that does not mean he is weeks or months from the end, necessarily. He could well have a year or more. There are other factors, like how well-nourished he is.

I would also ask for regular oximeter readings by the hospice staff if you don't have your own (they are sold in drug stores), and those readings might also help answer your question. Also, you say that they don't tell you much. You have a right to know everything they do. Take it a level up if your staff is not cooperative. Explain your concerns. They are people, like you.

For all, it's always a good idea to take home or at worst have mailed/e-mailed your clinic notes and all test results, as with all the docs you see for anything.

Best,
Laurie
 
Thanks for your help, Laurie. I just spoke with his nurse at the ALS clinic. She gave me some numbers from his PFT. His FVC was 1.07. His Inspiritory Force was -19, his oxygen level was 96% (she explained that ALS patients usually do have normal/high numbers for this), and his % Predicted was 23%. They do not check any CO2 numbers. We are going to call his respitory therapist to come check his machine. They have adjusted and lowered his numbers several times because he complains of it being too forceful. But this is unusual considering his breathing has gotten worse, most patients find they want their settings increased. So I'm not sure why it would feel too strong.
 
Kris,
It's a myth that everyone needs more air as they progress, just like it's a myth that a backup rate needs to be the respiratory rate the person used to have. Slow deep breaths are often best. Often people need less air than what the RTs try to set, because of lost lung capacity as the muscles lose their ability to stretch/move with breathing. The idea is to reduce the "work of breathing," calculated as respiratory rate /tidal volume, to somewhere around .33 or less as is comfortable.

My husband gradually needed less air and I adjusted his settings accordingly. If you're more comfortable w/ the RT than doing your own adjustments, tell him or her that your dad needs a lower target volume, greater minimum pressure support and/or lower max IPAP, and have them try each in succession so your dad can weigh in.

I can't make out all your settings because the ones that are not percentages require his height to be meaningful and it's not clear what measure was 23% of predicted. Ask for a printout. Do you mean MIF or MIP?
 
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