kljack16
Active member
- Joined
- Sep 18, 2020
- Messages
- 46
- Reason
- Lost a loved one
- Diagnosis
- 08/2020
- Country
- US
- State
- MS
- City
- Starkville
I apologize in advance. The search engine seems to be having issues; so if there are already threads on this, I couldn’t find them.
We just went to the ALS Clinic in Houston, TX. My husband’s FVC is now at 27%. I’m trying to get an understanding of what this means in his progression.
He does not want to do the trach ..: or at least previously has said no to it. In the 20s is what they have always said was a line in the sand, so to speak. Is it?
Background - his upper body is where the disease first presented. He was officially diagnosed 8/31/2020. His FVC then was in the 90s. January 2021, it was in the 80s. In July 2021, it was right about 50%. Late March 2022, it’s 27%.
He can still stand and shuffle his feet to get from the chair to the bed or to the car.
What kind of timing are we facing? The clinic didn’t say anything other than to up his use of the Trilogy/AVAPS/BiPAP machine to all night (as we’ve been doing) and 3-4 hours each day. He’s so tired all them time. We were attributing this to the Baclofen, but now I’m wondering if it has to do with his breathing.
They put him on added O2 a month or two ago … this has upped his pulse ox to mid 90s; so all of this is pretty confusing to me.
Any experience/input would be greatly appreciated.
As always - thank you for all the support and guidance!!
We just went to the ALS Clinic in Houston, TX. My husband’s FVC is now at 27%. I’m trying to get an understanding of what this means in his progression.
He does not want to do the trach ..: or at least previously has said no to it. In the 20s is what they have always said was a line in the sand, so to speak. Is it?
Background - his upper body is where the disease first presented. He was officially diagnosed 8/31/2020. His FVC then was in the 90s. January 2021, it was in the 80s. In July 2021, it was right about 50%. Late March 2022, it’s 27%.
He can still stand and shuffle his feet to get from the chair to the bed or to the car.
What kind of timing are we facing? The clinic didn’t say anything other than to up his use of the Trilogy/AVAPS/BiPAP machine to all night (as we’ve been doing) and 3-4 hours each day. He’s so tired all them time. We were attributing this to the Baclofen, but now I’m wondering if it has to do with his breathing.
They put him on added O2 a month or two ago … this has upped his pulse ox to mid 90s; so all of this is pretty confusing to me.
Any experience/input would be greatly appreciated.
As always - thank you for all the support and guidance!!