A Vent in Need ...

[CindyM]

I think I found out the difference between nose pillows and full face masks. Remember when I said my PT told me full face masks are better with a Bi-Pap?

So: my machine is set for 12 inspiration and 6 expiration. I actually use 15 inspiration and 12 expiration when I am using the full face mask. With the nose pillows, the numbers go down to 9 inspiration and 6 expiration.

I think this means I should use the full face mask. It is irritating but I do feel better overall when I use it.

Rose: it is criminal what has happened to you!

 

[BethU]

Thanks so much for the support, guys ... it really helps.

Sharonca ... I'm in the UCLA clinic program, paid for by MDA, but anything my insurance (Blue Shield) will pay for, MDA won't. So every procedure/device UCLA orders has to go to bs first. If they formally reject it, then MDA will pay. If it's something that bs will pay for, then I have to go to the bs doctors or clinics. This is why everything takes so long ... and there's a lot of miscommunication among doctors who don't know each other and refuse to consult, like my pulmo, who refuses to call my neuro. (Just a little ego issue there.)

 

[sharonca]

We can only hope one of these insurance jerks get caught in the loop someday and finds out how it feels. Nothing serious ya know - just can't get something paid for that they need.

 

[nspoc]

Hi Beth -

I have been following your posts for a long time and am quite an admirer.

Anyway - I used to work at UCLA Medical Center, and the PALS I care for was diagnosed there and also worked there - so I have a familiarity with that place. It is very complex and bureaucratic unless you know someone.

Several suggestions - can you change DME companies? We just had to do that with Pat's vent company - much better now. Can you get on Medicare? MUCH less hassle - pretty much pays for equipment without hassle. Also - you are guaranteed to be able to switch companies.

Also - have you considered Cedars-Sinai for your care - some PALS seem happy with that place (I have no experience with them). We had to change ALS clinics to get better care. Lucky that we have at least 3 in the Chicago area.

I am appalled at your bipap care - you need a resmed VPAP with back-up rate - actually acts as a ventilator if need be. Call ALSA and see if they can help advocate for you. Also - possibly threaten to report the poor care to an accrediting agency, such as JCAHO.

We, also, have had the same medical competition in Pat's care - the bad news is that you may have to switch care sights, maybe even more than once, but when everything works together it will have been worth it!

My friend and I both have medical center backgrounds and my husband is a physician. Still - navigating the medical system has been daunting and exhausting. But now we seem to be in a pretty good place.

I wish you the best - the you are a tremendous bright light on this forum.

Beth