BiPap Question

[notme]

HI

A certain Guardian Angel sent me a Bi-Pap from someone that had had it donated. I found the manual and the setting manual to set things. (I found the 'secret code' manual)

My question--Anyone know what I should set things at? It's a Goodknight 425ST if that helps.

My FEV/FCV is 72% (Or was 2 months ago)

I'm really excited to try and see if this makes me feel better. It sure can't make me feel worse. My cpap company has yet to return my call--from weeks ago--asking for a different mask type.

My neurologist is the one that suggested it, but I think you guys with FCV around my range might have a better idea of where to 'start' so I don't set something too high.

It does have a heated humidifier, too. Thanks in advance for any suggestions. I'd like to be able to go see the neuro next week and tell her if this helps any of my odd symptoms or not.

(PS: I did not want to put this in the Do I Have section as I had visions of everyone with a twitch going and buying a bipap)

 

[asantiago]

notme, my eye has been twitching a lot lately, do you think the bipap would help me? JUST KIDDING! My mom had to have a whole sleep study to determine where to set hers but I have no idea if that's the norm.

 

[pmbenb83]

The neuro told the respiratory therapist what to set the numbers according to my husband's FVC at each appointment. When he was at 69%, the numbers were low. You could call the neuro and ask the doctor what settings to use for your percentage.

 

[trfogey]

Most everybody I've known started out at numbers like 8/4. I'd recommend letting your ALS clinic neuro know that you have the machine and see if she'll write the order herself.

And the twitchers will back off buying a BiPAP when they see the price tag.

 

[notme]

Thanks guys. They started the cpap at 8, but as I was still desaturating, raised it to 9 in a few hours. So, I'll go with trfogey's suggestion and definitely let the neuro know I have the machine, too, and try the 8/4 he suggested.

Don't know what I'd do without you guys. And the kind Guardian Angel.

 

[notme]

Another probably dumb question--are these machines (bipaps) supposed to be extremely loud? I tested it last night while I was watching tv on the setting Allen suggested...but it was so loud--I mean REALLY loud--that I gave up after several hours.

My cpap mask worked with it--and the model is discontinued, so no help in that front, I called--and they said it might be the motor going. My cpap is relatively quiet.

Those settings, by the way, didn't make me feel like my lungs were going to explode, Allen--so thanks for the tip. I tuned it out with my TV on headphones--but my roomie complained about the noise, so I shut it off.

And you're right about the price. No way I can afford one. I'm grateful for the donated one--I just need to figure out if it's fixable so as to not be quite so loud---it's loud on inspiration--and my respiratory rate is about 30 while resting, so is bothering people I live with.

 

[brooksea]

It might be a dinosaur model. Nonetheless, it's still a BiPap. What's is look like or what is the name and model?

 

[notme]

GoodKnight 425ST It's about 4 years old, I think. The humidifier works and all. The nice person even sent a new mask that fits (full face) and I tried it with my nasal mask, too.

 

[brooksea]

Well, that's no dino. There is going to be noise. I, myself, find the noise comforting.

 

[notme]

My cpap doesn't bother me at all--their website said this one should be nearly silent, so I was wondering if there was anything I could take it in and have oiled or something. I sleep with noise---can't sleep in silence--but it's even too loud for me.

 

[brooksea]

I don't know what area of Orlando you live in, but I know there are BiPap/CPap distributors in the vicinity. Maybe a call to a couple can give you some info on how to diagnose the problem or where to take for repair.