Old 03-05-2017, 04:48 PM #1 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Question about PFT

My FVC has increased slightly since 2014 but my total lung volume went down and then stayed at 60-70 for the past year.

My MVV is at 95% It was 120% in 2014 but it varies. 95% is the lowest. After the 95% was done, I did one that was 118%.

Why is my PI max negative? I'm not short of breath, even lying on my back.

I'm hoping Laurie can give me an answer.

I did the slow FVC (not sure what it's actually called but it is breathing out slowly, then in slowly and that was 95%.

Attached is my last test, done in December.
Attached Thumbnails
Question about PFT-scan0001.jpg  
KimT is offline   Reply With QuoteReply With Quote
Old 03-05-2017, 06:34 PM #2 (permalink)
Vincent's Avatar
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 509
Vincent has a spectacular aura aboutVincent has a spectacular aura aboutVincent has a spectacular aura about
Vincent Vincent is offline
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 509
Vincent has a spectacular aura aboutVincent has a spectacular aura aboutVincent has a spectacular aura about
Default Re: Question about PFT

The big number we tend to look at is FVC, the top number. It says 77%. Not awesome, but not worrysome either. Below 50 and we are looking bipap, feeding tube, that sort of thing. Having said that, You can stay at that level for a long time. You can also be in the low 30s and not feel air hunger. The PI max is a negative becaues you are drawing air in, negative pressure.It is a strange disease.
Vincent
Vincent is offline   Reply With QuoteReply With Quote
Old 03-05-2017, 06:36 PM #3 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: Question about PFT

I'm more interested in my respiratory muscle strength since my FVC has been about the same for two years.
Also, my surpine FVC is the same as sitting or standing.
KimT is offline   Reply With QuoteReply With Quote
Old 03-05-2017, 06:49 PM #4 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: Question about PFT

Quote:
Originally Posted by Vincent View Post
The big number we tend to look at is FVC, the top number. It says 77%. Not awesome, but not worrysome either. Below 50 and we are looking bipap, feeding tube, that sort of thing. Having said that, You can stay at that level for a long time. You can also be in the low 30s and not feel air hunger. The PI max is a negative becaues you are drawing air in, negative pressure.It is a strange disease.
Vincent
So does that mean I'm at 213% ABOVE normal for my PI max? I just don't understand why the Reference is 73 and my actual is (155). It looks like the expected is a positive number and my actual is a negative number.
KimT is offline   Reply With QuoteReply With Quote
Old 03-06-2017, 02:13 AM #5 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
Default Re: Question about PFT

Expected PImax number is negative as Greg notes but often on reports shows as positive due to poor app design. No way yours is 155. I'd completely discount it.
lgelb is offline   Reply With QuoteReply With Quote
Old 03-06-2017, 07:15 AM #6 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: Question about PFT

But what would (155) mean?

The technician repeated it 10 times and repeated my PE max 5 or 6 times. He made me squeeze my cheeks a few times.
KimT is offline   Reply With QuoteReply With Quote
Old 03-06-2017, 01:26 PM #7 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
Default Re: Question about PFT

That's the thing. It's meaningless. It can't be that far outside range. It's a mouthpiece test so I can only presume it was done or recorded incorrectly, perhaps with the wrong mouthpiece for you or the wrong switch flipped -- I don't know. Disappointing not to see a SNIP value, where there are data to suggest complementary prognostic value in ALS.

For those who may be browsing the scan, note the test values in parens are not "negative," they are just the ones below predicted range. I really hate that format.

To Vincent's post, I also wanted to add color commentary that increasingly ~75% rather than 50% FVC is seen as a threshold for considering BiPAP, and that the position of the stomach is more important than FVC for a RIG (feeding tube placed in radiology) since PAP can be used during the procedure and studies have shown safety in that scenario.
lgelb is offline   Reply With QuoteReply With Quote
Old 03-10-2017, 06:43 PM #8 (permalink)
gooseberry's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Popopopo
State: All
Country: US
Diagnosed: 05/2014
Interest: I lost a loved one to ALS/MND.
Posts: 3,202
gooseberry is a glorious beacon of lightgooseberry is a glorious beacon of lightgooseberry is a glorious beacon of lightgooseberry is a glorious beacon of lightgooseberry is a glorious beacon of light
gooseberry gooseberry is online now
Extremely Helpful Member
gooseberry's Avatar
Join Date: 2014
City: Popopopo
State: All
Country: US
Diagnosed: 05/2014
Interest: I lost a loved one to ALS/MND.
Posts: 3,202
gooseberry is a glorious beacon of lightgooseberry is a glorious beacon of lightgooseberry is a glorious beacon of lightgooseberry is a glorious beacon of lightgooseberry is a glorious beacon of light
Default Re: Question about PFT

Kim, I think your mip and mep are more indicative of diaphragm and accessory muscle function.
gooseberry is online now   Reply With QuoteReply With Quote
Old 03-10-2017, 07:08 PM #9 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: Question about PFT

Yes, but it appears the tech made a mistake in my MIP. I think he might have plugged the MEP into it somehow. It doesn't make sense in light of my MVV being so high (95 was the lowest and a subsequent test showed 120%)

I'm so disgusted I ordered medical equipment so I can test myself. No more PFT in hospital for me. My FVC is just as good lying down as it is sitting or standing. The only number that worries me is my total lung capacity and I'm using a cough assist machine and inspiratory training device to see if I can get it up. I've always been a shallow breather and slow breather.
KimT is offline   Reply With QuoteReply With Quote
Old 03-10-2017, 07:10 PM #10 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: Question about PFT

Also, the machine I ordered will do the SNIP value with less than + or - 5%.
KimT is offline   Reply With QuoteReply With Quote
Old 03-10-2017, 07:35 PM #11 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
Default Re: Question about PFT

Hi Kim,

Knowing PFT/spirometry numbers does no harm if it is not an effort, but none is reliably correlated with near-term progression as yet. We say treat the patient, because as we have seen here, PALS here with similar FVCs have vastly different clinical pictures (e.g. of two people with the same FVC, one might not be on BiPAP at all and another might be on it nearly full time) based on differences in which muscles are driving the numbers, and their other symptoms. We also see that bulbar dysfunction skews the numbers quite a bit, as can simple pre-existing things like blocked sinuses. Thus, the delta between intervals is in truth non-linear.

Best,
Laurie
lgelb is offline   Reply With QuoteReply With Quote
Thanks from
KimT (03-10-2017)
Old 03-11-2017, 03:14 AM #12 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,949
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
Default Re: Question about PFT

Steph, the MIP and PImax are the same thing, as are MEP and PEmax.
lgelb is offline   Reply With QuoteReply With Quote
Thanks from
gooseberry (03-11-2017)
Old 03-20-2017, 07:41 PM #13 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: Question about PFT

So I did a SNIP test with my new toy. It was between 110 and 120 which looks to be very strong. It was stronger than Fred's. I did it multiple times in each nostril and used the reference range I found online. The serial number on the software is not plugging in correctly so I have to call the company tomorrow.

My MIP was also way above normal.
KimT is offline   Reply With QuoteReply With Quote
Old 03-21-2017, 12:40 PM #14 (permalink)
New Member
 
Join Date: 2016
City: Bala Cynwyd
State: Pa.
Country: USA
Diagnosed: 06/2009
Interest: I have been diagnosed with ALS.
Posts: 56
ehd42 is on a very distinguished road
ehd42 ehd42 is offline
New Member
Join Date: 2016
City: Bala Cynwyd
State: Pa.
Country: USA
Diagnosed: 06/2009
Interest: I have been diagnosed with ALS.
Posts: 56
ehd42 is on a very distinguished road
Default Re: Question about PFT

Hi

If your FVC (forced vital capacity) is 77% of predicted and hasn't significantly changed in two years then it would indicate that your respiratory muscle status is stable at this time and therefore you should have not a reason for concern. In contrast, a trend of decreasing FVC over time would mirror the decline of respiratory muscle strength in ALS. I wouldn't be concerned about total volume changes since they are not a good marker for respiratory muscle strength and are mostly affected by lung disease, obesity and many other factors that are not relevant to ALS.
Your FVC value will decline if your muscles involved in expiration or inspiration significantly weaken, although pulmonary disease such as asthma, COPD or interstitial pulmonary fibrosis would also cause a decrease in FVC.
The maximum inspiratory pressure MIP (PImax) and SNIP values primarily reflect diaphragm muscle strength in ALS and are the most sensitive tests for early detection of weakening of the diaphragm. Your MIP and MEP values are essentially normal, ignore the parentheses that they are outside of the normal range, but they do not represent numerically negative values
Your PEF (PEFR) of 115% of predicted as well as your normal MVV (96%) support that your respiratory muscles are functioning adequately or you would not be able to achieve such values. In addition, if you have no shortness of breath at rest, lying down, and during moderate exertion this would support that you do not have a significant decline in your respiratory muscle strength and therefore you need not be worried about declining respiratory function at this point.
The accuracy of pulmonary function results is dependent upon proper calibration of the equipment, the pulmonary function technician's ability to get the greatest effort possible from the patient, the patient's ability to maintain a good seal around the mouthpiece, and finally patient’s cooperation. Any problem with the foregoing will affect the validity of the results.

If you plan to do pulmonary function testing on yourself I suggest that you also purchase calibration equipment and practice your maneuvers until they are consistent however, I do think that performing too much testing at home could lead to a lot of anxiety and that you would be better off having your pulmonary function tests performed in a professional environment. If you still have concerns about this matter I suggest you go to a different pulmonary lab, preferably one at a university hospital, and get a second opinion.
I am curious about the Brand of equipment you plan to use at home and if it meets ATS standards? I have used a simple and inexpensive peak flow meter and oximeter to keep objective track of my respiratory function at home since they will able to help me to objectively keep track of what is going on should I sense that my breathing has deteriorated.


Best wishes

Eliot
ehd42 is offline   Reply With QuoteReply With Quote
Thanks from
KimT (03-21-2017)
Old 03-21-2017, 01:12 PM #15 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: Question about PFT

My home assessment equipment is professional grade and recommended by a pulmonary doctor who is a friend. The disposable mouthpieces are pre-calibrated. The results were very close to what they measured at my last test. I'm confident that I have good equipment.....especially after I get the software loaded.

I've had PFT done at Mayo Clinic and Johns Hopkins as well as Florida Hospital.

For me, there is more anxiety in not knowing. I also do periodic grip strength testing.

I understand that many people prefer not to know or not to dwell on it. I'm focused on keeping measurements for as long as I can because I've started inspiratory strength training based on results of a clinical trial. I'm also using a cough assist machine to help expand my lungs.
KimT is offline   Reply With QuoteReply With Quote
Reply

Tags
back, breathing, fvc, test


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Twitching Question & Muscle Pain Question Briansmom444@yahoo.com Do I Have ALS? Is This ALS? 21 02-12-2009 11:59 AM


All times are GMT -5. The time now is 01:04 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016