Another Pulmonary Question

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Don

Member
Joined
Dec 24, 2019
Messages
19
Reason
PALS
Diagnosis
11/2017
Country
US
State
MA
City
Northbridge
Hello all, last week at my clinic I had a pulmonary test with results, according to my neurologist, indicating very serious weakness. My FEV1 was 1.20 and FVC was 1.23. Laying on my back the numbers were 0.89 and 0.85. In March of 2019 I was 2.49 and 2.17 (FVC and FEV1) so the last year has seen great reduction. I don't mind sharing this, and I was just wondering if anyone else has seen numbers like this and what they possibly mean when it comes to how serious this is. My neurologist had a difficult conversation with me and did not hold back, being as truthful as possible and it was not good news. I thank all of you for your feedback, I enjoy being able to "open up" on this forum.
 
Don, my recent numbers are even lower. What matters is how you feel. Numbers are just numbers. Are you using BiPAP and do you have a cough assist?
 
I do feel out of breath frequently, but otherwise I feel OK for 2 1/2 years since diagnosis. I have cough assist and use BiPAP every night and occasionally during the day. Thanks for sharing and the positive feedback.
 
If you are out of breath frequently (only when not on the machine or also when using it?), likely your BiPAP settings should be tweaked and/or you aren't using it enough. There is no reason for air hunger until the very end. I'm always happy to help w/ settings reconsideration.
 
I only know my FVC in % format so I don't know what your raw values equate to. I'm at 63% sitting up, and 48% lying down. I think my numbers are good for a PALS. I have BiPAP at night but struggle to be consistently compliant. I do breathe easier with it on, but I hate sleeping with it on, so then I need enough lorazepam to knock me out and that causes shallow breathing which makes my device alarm every 20 min in the middle of the night.
 
Kristina, all the "too little air is being moved" alarms are configurable, so you can (and should!) avoid alarms during sleep. Let me know if you need help.

On the other hand, if your Vt works for you, you should have the full benefit. And if it's the mask that bugs you, there are lots of masks...
 
I love my mask. Vt is good. My issue is being stuck on my back all night. I have a LOT of pain if I am not changed position throughout the night.

I switched to VOCSN and it doesnt allow you to turn off alarms like trrilogy. that being said i like it much better
 
Every one of the VOCSN alarms you might be triggering can be set to "off" or "none." But the permissions, which are controlled by passcode, have to be set to "User and Clinician" configuration.
 
Really? My RT (who I am not a fan of) told me there is no way to turn alarms off on VOCSN the way you can on trilogy. She was disapproving of my choice to switch but im really happy with it. I love that it doesnt dry my mouth out and I like how it continues to vent you during cough exercises. and it's so nice not to have to pack 3 bulky devices when we go anywhere.
 
She's wrong. I've attached the relevant page from the tech specs. It is a great concept to combine all the devices, agreed.
 

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  • vocsn_tech-specs_current 9.pdf
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