FVC in the 40% range ... scared!

[my3sunz42]

My Pals and father of our 2 eldest sons FVC dipped from the 70% range down to the 40's in the past 3 months ... I'm terrified! I know everyone progresses differently, but I just want to be prepared. I've been reading & searching this site for clues on what to expect in the coming months. Given that it dipped so quickly is this a sign of things to come? How do we prepare our boys (we have 2 - age 19 & 16 / he and his wife have 2 - age 8 & 6 / I have 1 age 10)?

Strange as it may sound - this disease has brought us together as 1 big family. I want to be prepared so that I can be the strong one for his wife and our children as we go through this living hell. Any perspectives are greatly appreciated.

 

[vickim]

I cant' comment on the fvc but I can send wishes and prayers. I think you are already on the right track with strength and support for the family you have become. Maybe some family therapy. Maybe find out if there is a group for the kids that talks about the loss of a parent and dealing with grief. ((((HUGS)))).

 

[vlcare]

My husband's last FVC reading was 37%. Right now he is at the kitchen table reading the newspaper. He uses the Trilogy portable breathing device most of the day. He uses his power chair most of the day. But he lives all day long.

Don't be terrified. When my husband was diagnosed his FVC was already in the mid-60's. We take it a day at a time.

Good luck.

VL,
Caregiver

 

[my3sunz42]

Thank you both for your responses & encouragement ... I'm usually a 'glass have full' kinda gal ... it's just getting scarier at this point. VL, you said that your husband's FVC was in the mid-60's when diagnosed ... how long ago was that? Does anyone know how low an individual's FVC can go before their body (even with help of BiPAP) can no longer survive?

 

[vlcare]

My husband was formally diagnosed in March 2010. However, he had symptoms going back to 2008--mostly fatigue. His first EMG occurred in October 2009. The confirming EMG occurred in March 2010. He uses non-invasive ventilation, but it is every bit as effective as if he had a trach. What usually causes respiratory distress and failure is pneumonia--either because of aspiration or infection.

FVC is not a very useful guide to length of survival for a lot of reasons. Better to focus on the quality of life for the victim and his family. How can you relieve some of the daily burden of care on his wife?

VL
Caregiver

 

[my3sunz42]

VL - thank you again for your guidance! And, yes we are always living each day to it's fullest (a tough lesson I also learned since I'm now a breast cancer survivor Best wishes to you & your dear husband!