Getting bipap

[Kristina1]

Update, they are ordering bipap for me now! Finally had that visit with pulmonary, supine fvc was 48%, down from 64% in June, so I won't have to argue with insurance after all. Oddly my upright fvc is unchanged and pretty good at 75%

 

[lgelb]

That is pretty common. You can mobilize more muscles when you are upright, and your airway is a straighter pipe. Glad to hear you are getting a BiPAP -- lmk if you need help tweaking it.

Best,
Laurie

 

[Kristina1]

thanks. I know it's common for supine to be worse, im just surprised supine dropped 15 or so points in three months while sitting up didnt drop at all.

 

[KarenNWendyn]

Thanks for updating us Kristina. I’m glad you are taking care of yourself.

 

[WeirdTim]

Great! Highly suggest talking to your pulmonologist and ask about a AVAP. I had a BiPAP fir the first year or so but when my new pulmonologist got me an AVAP my breathing got a hair better earlier this year. The AVAP automatically adjusts to what you really need where the BiPAP is the same setting all the time. A BiPAP actually will drain your energy some.

 

[lgelb]

To clarify, everyone with ALS is advised to ask for (and usually gets anyway) a machine with VAP (volume assured pressure), where you have a target volume set and the pressure adjusts accordingly. It is not a different machine, but a feature that not all BiPAPs have.

ResMed machines call the feature iVAPS, Respironics AVAPS. It may also be called "volume control" by other manufacturers.

PALS should also have a backup rate (ST feature), though esp. with limb onset, you may never trigger it, if it is set correctly.

 

[Clearwater AL]

Kristina, I have the ResMed AirCurve 10 w/HumidAir humidifier. AirFit N10 nasal.

I switched from the full mask to the nasal mask. I found the nasal more comfortable
to sleep with and or watching TV. And... you can nibble on a snack during treatment
but it stops when you swallow.

Hope you get both so you can try both.

 

[affected]

Kristina I'm doing my happy dance - only hours before you posted this I was thinking 'I wonder if Kristina has gotten any closer to getting a bipap'.

 

[Kristina1]

Thanks everyone! Im disappointed that my fvc lying down decreased so much. i did not even reduce my effort as an option to get low enough for insurance. I felt on the spot and just did my whole effort. I keep hoping that my poor lip seal is making the numbers seem worse than they really are. But, I AM really happy I will have bipap now. She said they should come out by end of next week.

 

[blitzc]

Like Tillie, I was ready to post on another thread if you were getting the BIPAP. I am so happy to hear that you should be on your way to getting help with this issue.

Prayers being sent your way for the best days possible!!

Blessings,
Cathy

 

[KimT]

Kristina,

Try not to put too much thought into the numbers. My FVC is actually higher lying down than sitting up. I think it has to do with my long legs and short waist. Mine is always better in the morning before I feed my face and fill up my stomach.

I'm sure the BiPap will make you feel better, no matter how low your numbers go. It's just getting used to it. You may have to try numerous settings before it feels right.

I'm glad it's on its way.

 

[Kristina1]

They came and set me up with the trilogy today. It feels pretty uncomfortable with that strange pressure. I'm not sure how I will fall asleep with that uncomfortable feeling. How long does it take to get used to it?

 

[Kristina1]

also, can I take one of my lorazapams to help me relax tonight when i use it, or would that make it dangerous somehow?

 

[ShiftKicker]

I'm not sure how many people took to using it straight off. I "practiced" with mine for a week during waking hours before I could tolerate it for any length of time. For the first little while I could only use it for 15 minutes or so before feeling totally overwhelmed and claustrophobic. I still don't find it super comfortable or forget I'm wearing it, but I really do feel better in the morning.

Give yourself some time to get used to it. Particularly if you need someone else to help you with putting it on/taking it off.

 

[Kristina1]

Ok thank you that's a relief, I wasn't sure if the expectation was to be using it all night long from day 1. I think practicing for short periods while awake would be a lot less overwhelming. im still worried i may always hate it or something but i know i need to not think to far ahead of myself.