DH got a PAP w/o sleep study

[mama_grits]

Hi All--

I'm sure DH & I will register soon at this site! Seems to be the place to go for answers.

His PCP sent him home w/ a pulse/ox after describing his symptoms. We've suspected sleep apnea for some time, but he hasn't had insurance & we were waiting on that. Well after that one night w/ the pulse/ox he was able to get a PAP machine, pending a sleep study. It's the S9/full face mask. It's been about 2 weeks now. He's had the initial sleep study done about a week ago, but told nothing about it except that he qualified for another one, which isn't scheduled for another month & a half!

Well he's having a horrible time w/ it all. My question is, how the heck can we bust into this bad boy to "take matters into our own hands" for the next weeks while we await further help from having his 2nd sleep study? Has anyone ever heard of this happening (getting a machine even before a study)? We were told it was basically like a favor they do for his doctor. But we have zero information to go off of, & DH is getting very frustrated. Heaven knows he needs it, though, he's needed it for years.

TIA!

[jdm2857]

The first study was to determine whether your DH (designated hitter?) has sleep apnea; the second one will be to determine his CPAP pressure needs (it's called a titration). Six weeks is a long time to wait.

The S9 you have is either an Elite or an Auto (it appears on the machine), and which one you have will determine any further advice. It's probably an Auto because you don't have a pressure setting yet.

Let us know.

[Janknitz]

Well he's having a horrible time w/ it all. My question is, how the heck can we bust into this bad boy to "take matters into our own hands" for the next weeks while we await further help from having his 2nd sleep study? . . . But we have zero information to go off of, & DH is getting very frustrated

This indicates that the results of the pulse ox were so bad that they figured that any treatment is better than none.

If he has the Resmed S9 autoset, it can be used for home titration, but it's probably set to a wide open range 4 to 20 cm and that can be uncomfortable. If he can hang in there until the titration study results are in, that's the best option, but if he can't, you can access the data and see what's going on. Perhaps experienced Resmed users can tell you how to access the data.

You'll want to look at whether he's having leaks--my guess is yes because if the pressure changes a lot the mask adjusted for a lower pressure will surely leak at a higher pressure. So that's the first thing to tackle--either by adjusting the mask at a higher pressure or by setting a more narrow range based on his 90% pressure averages (or both).

Then (or at the same time) tackle his comfort issues: Is he having a hard time exhaling? are the higher pressures waking him? Does he feel like he's suffocating at lower pressures? Is the mask uncomfortable or leaking badly? Let us know what issues he is having and we can make suggestions.

Most importantly, please don't allow him to decide if he can be successful at CPAP or not based on this early experience since the settings are not tailored to his needs and not ideal in this interim period.

[mama_grits]

THANKS already! Of course we've stayed up playing w/ this thing. It is the S9 Auto. He just saw the hose is broken?! Duct tape to the rescue? Broken right at the end connector.

Forgive my ignorance w/ all of this! I'll do my best w/ my limited knowledge.

It was set 4-20 pressure, 3 EPR. Wrong mask type. Leakage 15 I think? Worn about 2 hrs last night. AHI 14.

We turned it to 8min 13max pressure. 1 EPR entire time, no ramp. Put duct tape on the hose. He's over there doing the initial mask testing phase giving me a thumbs up.

Yes, he felt like he was suffocating. Then the few times he actually got to sleep w/ it he'd wake up & rip it off when it'd kick into high pressure. We'll see how he does tonight & I'll check in later. Maybe actually register!

[jweeks]

Mama,

Despite all the issues, 14 for the first night isn't bad. It isn't uncommon for it to start off a little higher, and then drift down over the first week or two. If he feels like he was suffocating at low pressure, the move from 4 to 8 will help. If he feels like he was suffocating at high pressure, then more ERP might help. If he finds himself at a pressure above 12 a lot, then he may be getting into BiPAP range rather than CPAP or APAP. Staying off of his back might reduce the pressure needs. Have him give side sleeping a try.

OSA messes with people's minds, and lulls them into the frying pan. Your DH is lucky to have someone like you to help him through this.

-john-

[Janknitz]

Wow, you sound like you've been reading up and are doing fine!

Don't be afraid of EPR. It will greatly help his comfort and should not adversely affect his AHI except in very specific circumstances. He can have it all the way up to 3 if that's what he needs for comfort.

[jdm2857]

Which mask do you have?

You can look at the pictures at https://www.cpap.com if you don't know the name.

[kteague]

Just wondering if his sense of suffocating when the pressure increased was actually that he had experienced an apnea event that the machine was responding to and the event had started the suffocating sensation rather than the pressure. Hopefully his leaks will be ok tonight and starting at a higher minimum will help with events. Let us know what tomorrow brings.

[Julie]

Please make sure that the duct tape hasn't covered the vents - those tiny holes in a circle (or square, or whatever) that let CO2 out. They're usually right at the angle of the rigid plastic just where it bends down to meet the hose itself, and must be kept uncovered by anything when asleep. But you've probably figured that out for yourself too!

[elena88]

Rest assured you have the best machine, you did good!

Lots of people have that machine here, so they can walk you thru the paces..


keep reading until you head explodes!

It might be a rocky road for awhile so get ready for some bumps, but in the end.. it will all be worth it..


elena

ps. I have that machine, and the swift fx nasal pillows, and THAT is an awesome combo..

[base2balls]

I had to wait a couple months so it seem for my titration as the person who was supposed to do it ended up in the ER that night I was to have it done and they had to reschedule it, Well first we waited to see if there would be a cancellation and there was one night when we were out playing bingo. Got home to find a message about it and then called them right back and the person there was a joker. I told then well gee I was at the bingo hall and it is 2 blocks away and she said and you didn't even hear the phone ring?? We got a good laugh out of that one so we went ahead and rescheduled the thing and still had to wait at aleast a month for it to be done. Then it was another couple weeks for the cpap. Good luck with every thing, Huggies, Fay

[Tired Linda]

[quote="mama_grits"] He's had the initial sleep study done about a week ago, but told nothing about it except that he qualified for another one, which isn't scheduled for another month & a half!

Sounds like you're working on getting a pretty good handle on it yourself, but I'd try calling the sleep center and ask about cancellations. They may keep a list of people to call to fill them, and get his name on that. He may be able to get in sooner.

Hang in there!
L

[mama_grits]

Thanks for never tiring of the endless newbies! Hopefully we'll be answering questions one day ourselves.

For the first time since he's had the machine DH slept all night w/ it on! Fell right asleep, 7 hours straight w/o even so much as moving. He was actually on his side, although he is a die-hard back sleeper usually. (He's also a mouth breather so a full face mask is a must for him.)

His AHI was 0.6, but his leak was 56 or something. Saw that the duct tape had come off the tube. I'm sure this was completely inaccurate info b/c of the broken tube? (He went & got new tubing today--the other had been slimline, he got standard instead.) But said he feels better today than the past trials w/ the PAP.

It's a start! Remained clueless until finding this board. Thank heavens!

Oh, and yes we are on the cancellation list for the titration study.

[guest2]

Does his hose cuff have the plastic addition for easy on and off? See cpap asseccories. Makes connect and disconnect easy and saves 'wear and tear' on the hose.