Newbie at 1 month w/frustrations

peasantldy · Post by **peasantldy** » Mon Jul 21, 2008 4:40 am

#1 I was switched from reg cpap at a setting of 9 to a Remstar Auto M -C Flex set between 4 and 9. I returned to see my Pulmonary Dr because of severe gas and belching issues (it made my gastric reflux problems worse)so its just been less than a week on my Auto and now my apnea symptoms are back-it feels as if it does not ramp up enough to the 9 setting. I called my R/T at Apria (not at all a pleasant office ) and he said the setting ordered by my Dr should be more like a 4 to 20 ..I know nothing about any of this and dont know who's advice to take. (2) Next and sorry to take everyone's time my mask is a waking nightmare it's a ff fisher and paykel 432. it slides around at the mouth area -though loosened as much as I can it still causes skin trauma where it sits and blisters on my nose bridge plus fluid like swelling under my eyes (aka bags If it means having to re-finance my home I have got to find a better fit mask . I have a good attitude about my need for Cpap and the few hours sleep I got at orig settings of 9 felt good . You all are so considerate and helpful here I know you will offer insight . I will post as I progress . Kt

tomjax · Post by **tomjax** » Mon Jul 21, 2008 4:58 am

There is no mystery that a lower setting of 4 will cause more events.

There is no reason for ANYONE to suggest a wide open setting of 4-20.
IMHO, your setting should be at the MOST, 3 below and 3 above your titrated pressure and probably only 2 lower than your TP.

I think others will agree that 4-20 is a very absurd setting.

Maybe the docs/DME do not know better.

I sometimes wonder where the get the basis of their advice.

Maybe the twilight zone.

peasantldy · Post by **peasantldy** » Mon Jul 21, 2008 5:15 am

Tomjax -it truely is confusing and now I'm thinking of getting the software to figure it out somehow myself and with the help of this board .No one in my Dme apria office has the time or patience to explain anything . Kt

alnhwrd · Post by **alnhwrd** » Mon Jul 21, 2008 6:27 am

Welcome, and please fill in your profile, preferably in text, so we can see what kind of equipment you have and make better suggestions.

Even without the software you should be able to tell some things. 4cm is way too low. What pressure were you titrated at? The aerophagia is an issue, but so are the apneas, and you have to keep your pressure high enough to address them. I'm no doc, but Tomjax's suggestion sounds like a good place to start.

It also sounds like you have the wrong size mask, which is often the culprit when you are having the problems you describe. Different faces need different interfaces. Cpapauction has lots for sale at reduced prices so you don't have to mortgage your house. Can I suggest some paper tape and/or moleskin padding on the sore spots to protect them while you wait for a new mask? I have also found that a homemade "gasket" of a product called Mack's Silicone Ear Plugs around the cushion allowed me to loosen the mask enough to keep me from getting a sore face and keep the leaks down too. Just take a lump of putty, pull it apart and roll a thin rope between your hands. Apply to the cushion where it contacts your face to form a gasket. Put the mask on and smoosh it down on your face. You can get Mack's at any Walgreens, Rite-Aid, Wal-mart type store.

I wish you well and hope that you find the solution to your problems. I think you have a good attitude too. Best of luck to you.

DreamStalker · Post by **DreamStalker** » Mon Jul 21, 2008 6:29 am

[quote="peasantldy"]Tomjax -it truely is confusing and now I'm thinking of getting the software to figure it out somehow myself and with the help of this board .No one in my Dme apria office has the time or patience to explain anything . Kt

Slinky · Post by **Slinky** » Mon Jul 21, 2008 9:08 am

Well, very few of us can even breathe comfortably at 4 cms of pressure w/a mask on. I would agree w/the others that you need to raise that lower pressure. Very few people can breathe comfortably w/a pressure of less than 6 cms.

Because of the reflux and aerophagia I would be VERY reluctant to set the top of the auto pressure range very high. Its all well and good to "say" these autos won't go any higher in pressure than you need - but that is assuming a good mask fit and NO LEAKS. These newer xPAPs are very good at compensating for pressure leaks - sometimes TOO GOOD if you have major leak issues and reflux.

I'm not sure of the exact method of pressure response w/the Respironics but it would be somewhat similar to the Resmeds that I have. With a pressure setting of 4 cms, the device would start out at 4 cms of pressure and build up in pressure in .2 cm increments when responding to "events" or if Ramp is turned on during the Ramp period. That is why the suggestion of a pressure range of only 4-5 cms.

The other suggestion is to NOT make too many changes too fast. Get the leaks under control whether that means a new mask or a "fix" for your current mask. THEN make ONE pressure change at a time and stay there for a week before making another ONE change.

How long has it been since you FIRST started CPAP? You may need to engage in some "warfare" w/Apria to get proper service from them. You should have been/should be allowed to try different masks both at the "shop" and the more promising ones at home until you find the "right" mask for you.

Resmed, Respironics and Fisher & Paykel will replace FREE to the local DME supplier MOST ANY of their masks patients have been unsuccessful w/IF the DME fills out a form and returns that mask W/IN 30 DAYS.

Have you ever checked w/your insurance company about what local DME CPAP suppliers they are contracted with? It may be that you have the option of more than just Apria and might get better service, support and a more lenient mask exchange policy w/another local DME supplier.

Do you know what your DME benefits are? Is the xPAP a "capped rental", i.e. rent to own after a set number of months? If you have the option of other local DME choices you have a "weapon" to use in negotiating w/Apria or dumping them. If you've been w/Apria more than 60 days that may take some talking w/your insurance company and explaining the difficulties and poor service.

Good luck. Always keep in mind that no one has a more vested interest in your health care and therapy than you do and that YOU are paying the bills whether thru insurance or out of pocket. Diplomacy, tact, but determination and firmness can go a long way in negotiations.

Slinky · Post by **Slinky** » Mon Jul 21, 2008 9:13 am

I missed or overlooked that you've only been on CPAP one month. That is GOOD "IF" you have the option of another local DME supplier besides Apria AND at getting that mask exchanged for one better fitting.

Insurances and DMEs allow for one month of adjustment/compliance and thus DME's seldom submit a bill for equipment for 45-60 days for first timers. But you ARE running out of time. NOW is the time to take a deep breath and approach Apria about another, better fitting mask or ......

And by the way, it sounds like your doctor is one heck of a whole lot "smarter" about autoPAP use than Apria's ditz of an RT.

CRMW · Post by **CRMW** » Mon Jul 21, 2008 10:48 am

Before ditching the mask, try loosing it off even more. I use a 431 (same mask without the grey insert) and it is so loose, when then CPAP is not turned on I can breath around it and it almost falls off. When you turn the machine on, pull the mask away from your face and let the seal fill with air. If the hard frame is touching your face, it is still too tight. This won't help if the mask is the wrong size, but it is worth giving it a shot as it will probabally be a day or two to get a new mask.

Chris

peasantldy · Post by **peasantldy** » Tue Jul 22, 2008 3:31 am

To all of you a million thanks for your help and suggestions . I am going to make that dreaded call to my Apria DME and see if he will allow me to try a new mask fitting and the Dr ok'd me to have the setting upped to starting at 6. I was titrated at 9 at the sleep clinic.All of your tips I'm going to try and maybe I'l become an 'expert 'in helping others in time. My insurance 'Aetna' contracts only w/Apria here in Calif. I'm hoping that after my Septoplasty surgery I can use the nasal prongs (the silver lining Kt

Guest · Post by **Guest** » Tue Jul 22, 2008 11:18 am

If you are truly interested in prongs, PM "Babette" about the Great Nasal Aire II Test Drive. More info here:

viewtopic/t23207/Babettes-Nasal-Aire-II-Tip-Sheet.html

Cheers,
Babette

How do I add · Post by **How do I add** » Thu Jul 24, 2008 12:30 am

How do I post my profile as in adding my cpap equipment. Appreciate the help. Kt

Snoredog · Post by **Snoredog** » Thu Jul 24, 2008 1:29 am

IF the machine came setup from Apria, it is probably IS set to default settings of 4 cm to 20 cm.

If you felt better before at 9 cm, then the Minimum pressure of 4 cm needs to be increased closer to 9 cm. IF you are having problems with aerophagia, you want to keep that Minimum pressure as LOW as possible.

However, as already mentioned starting off at 4 cm pressure is probably too low for you, the incoming air will feel warm and stuffy, that indicates there is not enough airflow from the machine to flush out your exhaled CO2.

Since you mention aerophagia and/or bloating, I would increase that 4.0 cm pressure to 6.0 cm. Leave the Maximum pressure set to 20, that is okay.

Here, print this out and you can make the change yourself and not have to deal with those yoyos at Apria:

1. Hold down both the left and right (<-) (->) buttons while simultaneously plugging the power supply into the back of the device. Once the device beeps twice, it is in the setup mode and you can release the buttons.

Navigation:
-Press the plus (+) key to enter setup OR left and right (<-) (->) buttons to enter Data Menu.
-Use the left and right (<-) (->) buttons to navigate to the next/previous screen.
-Use the (+) and (-) buttons to adjust settings or change values.
-When you have finished modifying the settings, press the On/Off button to exit setup mode and return to User mode.

Additional Settings Info/Descriptions:
Mask Alert: This alert will indicate when the device has detected a mask leak. You can enable or disable the alert (default=disabled).
Split Night Time: This setting indicates the amount of time spent in CPAP therapy before transitioning to Auto-CPAP therapy (default=Off, 120, 180, or 240 minutes).
Show AHI/Leak: You can select weather or not the Apnea/Hypopnea Index and System Leak averages display on the LCD data screens (default=disabled, enable this).
Patient Reminder: Using the EncorePro software, you can set a customized text message that will periodically display to the User. The Reminder screen lets you specifiy how often the reminder will appear (every 90 days, 180 days, etc.).

Settings:
Therapy Mode=AUTO (CPAP or AUTO)
CPAP Pressure=10.0 (Only appears if in CPAP mode)
Auto:Max=20 (default=20, Only appears in AUTO mode)
Auto:Min=6.0 (default=4, Only appears in AUTO mode, set to 6.5 or higher)
Flex Setting=2 (default=1, Off, 1, 2, or 3)
Ramp Time=30 (default=0:05-45 minutes)
Ramp Start Pressure=5 (default=4 to Auto:Min, only appears if Auto:Min >4 cm)
Mask Alert Feature=Off (default=off)
Auto Off Feature=Off (default=off, should be off doesn't work that well)
Show AHI/Leak Feature=ON (default=On, you want this on to get LCD data)
Patient Reminder=Off (Off, 90, 180, 270,365 days)

To view data:
1. Hold down both the left and right (<-) (->) buttons while simultaneously plugging the power supply into the back of the device. Once the device beeps twice, it is in the setup mode and you can release the buttons.

2. Press the left and right (<-) (->) buttons to navigate to the Therapy Usage screen to observe data, should give you AHI information for 7 and 30 days averages, should also display number of days used >4hrs per night, 90% pressure, leak etc.

To RESET LCD Data to zero, while at the Therapy Usage screen hold down the minus (-) button for 5 seconds.

echo · Post by **echo** » Thu Jul 24, 2008 4:42 am

Hi KT, welcome to the forum and welcome to being a hose-head!

To change your profile, first you need to make sure you're logged in. Then go to the top of the page, and you will see "Profile" in the gray menu bar. Click on it.

On the profile page, scroll down the page until you see "Machine" and "Mask" on the left hand side of the page. Then just select your equipment from the drop down list.

Masks are indeed the hardest and most crucial part of the therapy.

Even if you don't buy the masks from the DME (alternatives: cpap auction, cpap.com ...) , insist on trying them out.. and make sure you're connected to the APAP when trying out the mask - then you can immediately tell if it will leak or not (for the most part). And what many of us have learned: do not ASK, But STATE what you want. Be polite, but FIRM.
Good luck!

tuna · Post by **tuna** » Thu Jul 24, 2008 6:34 am

[quote="How do I add"]How do I post my profile as in adding my cpap equipment. Appreciate the help. Kt

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