Fvc and the end

Status
Not open for further replies.

ralsip

Member
Joined
Jan 24, 2014
Messages
16
Reason
PALS
Diagnosis
01/2014
Country
US
State
Kentucky
City
Louisville
Sorry for the topic but curious about Fvc and life expectancy. My fvc held steady in the 60s for about a year but dropped from 64 to 44 from Feb to May. Started Trilogy in early June and use at night, but Fvc down to 31% at Clinic visit a couple of days ago. At this rate wondering how much time I have left. Good timesemoticon smile
 
Good question, Ralsip. I agree FVC is an important indicator, but I have no personal authoritative knowledge on that. Some other members are really smart on the subject, and will chime in, I'm sure.

I know for sure that the body adjusts. Some people live with incredibly low FVCs.

A more relevant number toward the end--in my mind--is Arterial Blood Gas CO2. But our doctors refused to measure that, saying that the important thing to do is comfort the patient day to day, rather than testing the patient to predict the future.

--Mike
 
First off, if you have significant difficulty making a "seal" for the test and are not provided with a mask instead of a mouthpiece to compensate, the FVC can be more reflective of "seal" muscle strength than vital capacity. That said, my husband's last recorded FVC was 28% 20 months before his death, and that was without "seal" difficulty. I am sure others w/ low FVC will chime in, but the level you are at, you could have years, especially if you let yourself use the Trilogy during the day as soon/often as you need to, without delay. Also, adjusting the settings as you progress can help your muscles get as much support as they can, without getting too much. Let me know if you need help with this.

Nutritional status would be another important aspect of how long you live with the disease. So to sum up, it's often not FVC per se that marks an expiration date.
 
Fvc can go up some, drop, stay stable etc and yet you may have progression or not. My husbands lowest measurement was 20%at clinic yet at the pulmo he sees its always 38-45%. The pulmo has said, just lime Laurie, that trilogy use at night and whenever needed during the day helps stabilize breathing.

I can tell you that while his fvc has been stable is inspiratory and expiratory muscles in particular,have become much weaker.
 
Status
Not open for further replies.
Back
Top