Another Newbie - Therapy not yet started - Update

[CruzTerri]

Thank you to all of you on chat this afternoon. Also, thank you to everyone who provides encouragement and information.

On December 22 I had my split study conducted. The results showing the following during the diagnostic portion:
AHI 75.7 per hour; there was no REM sleep; CPAP titration study AHI was 3.1 per hour with 17-cm pressure.

Due to the information that I have found on this and other forums, I determined that there was one DME that I surely didn't want to use. When I received the phone call from my family physician, after having received the sleep center results, they informed me that I have OSA and that they had faxed my prescription to that DME! I immediately requested a copy of my script and results and that I didn't not want to use the DME due to the problems others have and were having with that DME. Further, that DME isn't on the list of preferred providers for my area that I could tell.

So next week, I'll be taking my script and results to a local DME for their RT to review and I'm hoping that I can get this moving along as quickly as possible to get therapy started. The night after the study I already felt a difference!

So as soon as I have my equipment, I'll update my user info

Terri (CruzTerri because I like to cruise )

[jweeks]

On December 22 I had my split study conducted. The results showing the following during the diagnostic portion: AHI 75.7 per hour; there was no REM sleep; CPAP titration study AHI was 3.1 per hour with 17-cm pressure.

Terri,

What did you get for a RX? Hopefully, with such a high pressure, they have prescribed a BiPAP machine. Running an APAP or CPAP at 17 would be a challenge, though there are folks who are successful doing that. In some cases, insurance companies will not pay for a BiPAP up front, and they make people try and fail on CPAP before allowing them to go to BiPAP. That is just plain silly, in my opinion. If you didn't get an RX for a bi-level, go back to your doctor and see if he/she will write the prescription that way so you don't have to go through the failure cycle.

-john-

[sleepnationtv]

It is good to take control and go with a company that will give you good service. If you need any information about machines or masks be sure to check out our video blog http://www.sleepnation.tv

Good Luck

Dane

[CruzTerri]

[\quote]Terri,

What did you get for a RX? Hopefully, with such a high pressure, they have prescribed a BiPAP machine. Running an APAP or CPAP at 17 would be a challenge, though there are folks who are successful doing that. In some cases, insurance companies will not pay for a BiPAP up front, and they make people try and fail on CPAP before allowing them to go to BiPAP. That is just plain silly, in my opinion. If you didn't get an RX for a bi-level, go back to your doctor and see if he/she will write the prescription that way so you don't have to go through the failure cycle.

-john-[/quote]

Hi John

My RX is as follows:
"CPAP pressure at 17 cm; medium Respironics EasyLife nasal mask or other fitted mask. Should use Respironics C-Flex unit set at 3 + use in line humidifier"

The study results recommend an in line heated humidifier.

I think with the C-Flex I may be ok. I slept very well with during that portion of my split study

Terri

[rested gal]

Hi Terri!

I was one of the ones in chat with you. (Laura)

Looking forward to hearing how your visit with the DME goes. You definitely won't be typical of the usual herd that files quietly through the door.

[JamieM]

Terri,

Your DME story sounds familiar. The sleep lab did not want me to leave the lab until I chose a DME from THEIR list. I told them I wasn't sure which DME I wanted to use and they looked at me like I had 2 heads! They then pestered me with phone calls at home until I chose a DME. After I chose one I couldn't get a call back from them. So.....i requested a copy of my script from my Dr., which took another week because they said they had never given a script directly to a pt. and wasn't sure what I needed or was asking for?????? I finally got something from the Dr. and ordered a cpap online. what a hassle it was......
good luck!

Jamie

[Janknitz]

Welcome, Teri.

May I suggest you read "What you need to know BEFORE you meet your DME"--click on the link in my signature. This has valuable information that will help you when you evaluate DME's to decide who you want to give your business to. Most importantly, be certain to learn about what YOUR insurance will cover and how, rather than hoping the DME will tell you the truth about this.

Good luck!

[CruzTerri]

Welcome, Teri.

May I suggest you read "What you need to know BEFORE you meet your DME"--click on the link in my signature. This has valuable information that will help you when you evaluate DME's to decide who you want to give your business to. Most importantly, be certain to learn about what YOUR insurance will cover and how, rather than hoping the DME will tell you the truth about this.

Good luck!

Yes, I have already read them, thank you. I'll probably re-read them before I actually meet with my DME.

[CruzTerri]

Well last night was night #4. First and Second nights I took 1/2 Ambien to help me get to sleep, did ok. 3rd night I thought I'd give it a try without any sleep aid. My sinuses were sore, humidifier set at 3, fiddled with settings, so changed ramp to start at 7 instead of 4. I lie there and I can't get comfortable with my mask. To be honest, I can tell when there is a large leak, but can't tell if there is a small leak. Machine is running and it feels like cold air at the bottom of the mask, I can't feel anything leaking. Try to lie there to go to sleep, RRT had stated that the machine has to be placed lower than then level I am while sleeping. Ok, well, this seems to cause gravity to pull the hose that way giving me the feeling that it will be pulled off once gravity really gets a hold of the hose. So I tightened the mask a little, I know not to over tighten it, or at least I thought I didn't over tighten it.

Didn't get much sleep fighting with the hose, trying to keep it from pulling on the mask, "exhaust" blowing cool air causing my forehead to get cold, I'm cold can't get all the way under the covers because of the hose, can't put hose under covers as it pulls down on the mask too. UGH! Wake up with mask marks on my face, yes, I guess I pulled the mask to tight! Now my sinuses are really sore, I get up blow my nose and UGH, sore and bloody. Feeling congested, but knowing I'm not, when I get to work I took some Advil which worked cause it reduced the inflammation and I was able to breathe. Well, just goodie for me

Did some more reading, chatted with padacheek, BobFl, Laura, tmm, snug and others!! Thank you. Picked up a sinus rinse, used it an hour before bedtime, upped the humidifier, re-read paperwork to "seat" mask/headgear properly, still dealing with hose, but I'm gonna fix that too. Decided that sleep is necessary, so took 1/2 Ambien again. Ok, slept much better last night. I don't miss those nightly potty trips.

Sinuses are still sore but better and the Advil is helping with the inflammation, but I can tell the sinus rinse and increase in humidifier setting (4) helped a lot. The cool air I was feeling below my nose, is just the air circulating in the mask, just need to get used to it. I'll get a hose hanger for the hose and that will help with dealing with the hose and gravity.

Originally I had thought I would be able to put the machine on my night stand which is about level with the bed, but the RRT said must be lower. Where do you have your machine?

[rested gal]

Originally I had thought I would be able to put the machine on my night stand which is about level with the bed, but the RRT said must be lower. Where do you have your machine?

Nope, the machine does not have to be lower than the bed.

I've always kept my machine on the nightstand. The nightstand I've had for the past couple of years is actually higher...about six inches higher... than my bed. Machine (and humidifier) sit right up on top of my nightstand. No problem.

Probably the main reason "place the machine lower than the bed" is the usual recommendation is really so the humidifier will be lower than where your head is in the bed. Then, if rainout develops in the main air hose, gravity will make the water droplets run back down toward the humidifier instead of ending up in your mask. DMEs/RTs expect people will have the main air hose draped on the bed, hanging off the side of the bed. With humidifier set lower, that gives pretty much a straight route for any rainout droplets to run downward.

If a person doesn't have rainout -- simply doesn't have the problem in their particular bedroom environment, or is using a heated hose to prevent rainout problems, or isn't even using heated humidification at all, I see no particular reason the machine needs to be placed lower than the bed.

Well, maybe a couple more reasons:

To keep the noise of the machine a bit farther away from you.
Solution -- the newest machines nowadays are practically dead quiet.

To keep from accidentally pulling the machine off the nightstand on your head if you toss and turn and get tangled in the air hose.
Solution -- a hose hanger.

LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

LINKS to discussions about the Aussie heated hose, Repti heat cable, and other ways to deal with "rainout."
viewtopic.php?t=5305

[CruzTerri]

To keep from accidentally pulling the machine off the nightstand on your head if you toss and turn and get tangled in the air hose.
Solution -- a hose hanger.

Hubby is going to make me a hanger similar to the one Pur-Sleep sells We'll see how that works.

Thank you again for your help. Still awaiting the package