Another Newbie

scififan · Post by **scififan** » Sun Mar 16, 2008 6:51 am

Wow, a lot of information here!

I just started therapy on 3/11/08. I received my equipment before finding this site. My DME is renting me a HC233 with an Opus nasal pillow mask. I find that my nose is sore every morning, so after finding this site this weekend I have ordered the Profile Lite Nasal CPAP Mask. My current titration pressure is 5 and the RRT said that I didn't need anything more than a basic machine. My minimum SaO2 w/o CPAP was 66 and with CPAP (during the second sleep study) was 89. Should I consider a SaO2 monitor?

I like the idea of monitoring my own progress. Should I ask for an APAP machine with software capabilities? If they refuse, I have no problem with buying it myself. Is it worth it?

jimbassett · Post by **jimbassett** » Sun Mar 16, 2008 7:08 am

Welcome to the boards. This is the right place to find out what its all about.
I question a titrated pressure of 5cm as that is too low. You will feel like you're suffocating as thats really not enough air to clear our the co2 so you'd end up rebreathing your own air.

They will more than likely give you a bare bones machine like a RemStar plus. I would definately not accept that and at least ask for a Remstar pro which is data capable, but not an auto. I wound up buying my own ResMed Auto Vantage S8 even though they gave me a good Respironics Pro. It has been my life saver. So if you can afford it go for the auto by all means. Then get some good masks like the Quattro or the UMFF to get set and find where your at in your therapy. You must take control of your own treatment. Remember to read all thats written under the yellow light bulb at the top of this page. Take the time to fill out your profile with the text so we can see at a glance the equipment you're using. Makes it easier to give you more meaningful answeres. Again Welcome and keep us posted.

scififan · Post by **scififan** » Sun Mar 16, 2008 7:21 am

jimbasset,

Thanks for the quick reply! I included the machine (HC233) and current mask (Opus 360 Nasal Pillow CPAP Mask) in my signature. Since the HC233 includes a built in humidifier and no software capability, I didn't complete the other portions in the profile. What other information should I include?

I also mentioned that I have a Profile Lite Nasal CPAP Mask on order from cpap.com. How does that mask compare to the Quattro or UMFF?

RipVW · Post by **RipVW** » Sun Mar 16, 2008 7:23 am

Hello & Welcome, scififan! Glad you found this forum--SO much useful info and SO many helpful people here!

First, ditto to everything Jim said! Re the sore nose, many have that problem when they first start using a nasal pillow interface. It might just get better with time, or it might not. For me, the nasal pillow continued to make my nose sore, so I use a full face mask or a nasal mask.

Good luck!

"You are getting sleepy . . ."

Slinky · Post by **Slinky** » Sun Mar 16, 2008 2:55 pm

scififan wrote: ...I just started therapy on 3/11/08. I received my equipment before finding this site. My DME is renting me a HC233 with an Opus nasal pillow mask. I find that my nose is sore every morning, so after finding this site this weekend I have ordered the Profile Lite Nasal CPAP Mask. My current titration pressure is 5 and the RRT said that I didn't need anything more than a basic machine. My minimum SaO2 w/o CPAP was 66 and with CPAP (during the second sleep study) was 89. Should I consider a SaO2 monitor?

I like the idea of monitoring my own progress. Should I ask for an APAP machine with software capabilities? If they refuse, I have no problem with buying it myself. Is it worth it?

Welcome to the forum, SciFiFan! As suggested above do check out the wealth of info under both the Yellow Lightbulb AND the Red Ball w/the Question Mark at the top of the forum page.

If you want to stay w/the nasal pillows style masks give serious consideration to Ayr Saline Nasal Gel and Nasal Spray to help w/the sore nostrils until they toughen up.

Can you adjust the humidity on that device's humidifier or is it self-adjusting?

As previously stated, 5 cms of pressure is too low for most people to be able to breathe freely and sufficiently w/any CPAP mask. 5 cms is usually the bare minimum for exhilation pressure relief for those that need it!

Have you gotten a copy of the doctor's dictated results (about 1-2 pages) AND the scored data summary report w/graphs (about 5-7 pages or more) from BOTH your sleep evaluation study AND your titration study? (Or from your split-night study if that is what you had?) They are part of your medical records and if you are in the USA you have a LEGAL RIGHT to those copies AS WELL AS a copy of your equipment order (script). By all means, get a copy of your script as well as the above documents.

Which takes us to your CPAP machine. If you WANT a fully data capable CPAP then you should HAVE a fully data capable CPAP. And quite frankly, if your sleep doctor has any REAL interest in your success w/CPAP therapy he would insist upon and back up your request for a fully data capable CPAP.

I would start w/calling my sleep lab first and telling them what CPAP you've been given and that it is NOT acceptable, that you want a fully data capable CPAP so that your sleep doctor can effectively monitor your CPAP therapy and have data to help him to determine any therapy adjustments that might be needed rather than having to make adjustments by guess or by gosh or by multiple expensive titration studies. And ask if they can help you w/mask choices and fitting since the Opus is causing sore nasal problems. Hopefully you have a good sleep doctor who will back you up and write a new equipment order for a fully data capable CPAP "and" full face, nasal cushion or nasal pillows mask of patient's choice. If you have a really good sleep lab they will help you w/mask choices and fit.

My next step would then be to call my insurance company and ask what local DME CPAP suppliers they are contracted with. Hopefully, you will have the option of more than one so that you have a good bargaining chip and can shop more than just this one local DME supplier you are currently getting your equipment from.

My next step would then be to take your Fisher & Paykel HC 233 back to your current DME supplier. The HC233 is not even capable of tracking compliance. Tell them that it is not acceptable, that you want a fully data capable CPAP, which would mean:

1] Resmed S8 Elite w/EPR
2] Respironics Pro II w/C-Flex (has to be the Pro II if the pre-M Series)
3] Respironics M Series Pro w/C-Flex
4] Puritan Bennet GoodKnight 420S (but double check at cpap.com that the S is fully data capable, I'm fairly sure it is, but not positive).

But you need to do all these things NOW, the longer past 30 days you keep the HC 233 the more difficult it will be to convince your current DME supplier to make the exchange.

You should also discuss w/ANY local DME supplier what their mask exchange policy is. A lenient mask exchange policy can be VERY important.

Which takes us to a few local DME supplier and insurance "secrets" most local DME suppliers would prefer that you didn't know.

Insurances, including Medicare, pay for xPAP devices by HCPCS code. 1] Bare bones, 2] compliance data only, 3] fully data capable and 4] autoPAPs are ALL billed by the SAME HCPCS code. For billing AND reimbursement purposes all of the above are billed and reimbursed at the same code and amount paid. By providing a bare bones only CPAP the local DME supplier makes more profit than if they provide you w/any if the others. Most prefer to provide you w/2] the compliance data only device as that protects their profit margin (the lowest cost device w/the data to prove you use it).

And ... Respironics, Resmed and Fisher & Paykel will replace FREE to the local DME suppliers most any of their masks that a patient has tried and been unsuccessful with IF the DME supplier fills out a form and returns them to the manufacturer w/in 30 days.

It is NOT up to the local DME supplier's RT to determine whether you need anything more than a basic device or not. YOU are the patient who will endure the success or failure of CPAP therapy, YOU (or your insurance) are paying the bill; THEIR job is to provide the equipment, service and education to ensure that you ARE successful w/CPAP therapy w/in the realms of the doctor's evaluation and orders.

Good luck!

rested gal · Post by **rested gal** » Sun Mar 16, 2008 4:30 pm

scififan wrote:I like the idea of monitoring my own progress. Should I ask for an APAP machine with software capabilities? If they refuse, I have no problem with buying it myself. Is it worth it?

I think so. The one I'd get (and I'd get it before March 31 when Respironics' Minimum Advertised Prices are going to go up considerably) is this one:

Respironics REMstar Auto with A-flex M series.

I would NOT order the integrated M series humidifier for it, not even the "improved" humidifier. I'd get a separate humidifier that can be used with any machine, including the Auto with A-flex. I'd get the Fisher & Paykel HC 150 heated humidifier.

I'd get the Encore Viewer software. I'd shop around for best price for the software and if I found an online store that had it cheaper than cpap.com's price, I'd check with cpap.com about it. It's my understanding that cpap.com will price match.

I'd buy the necessary card reader for about $31 including shipping, here:
http://www.two-factor.com/shop/index.php?productID=115

With those things (and of course whatever mask suits you) you can monitor your "cpap" treatment very well.

Yeah, given how much your O2 dropped, I'd think about either buying a recording pulse oximeter or getting your doctor to have the DME do an overnight recording pulse oxi test on you once or twice a year while using your machine. I think they (the DME) will do that once for free at the doctor's request. Depending on how much they charge to do that after the first freebie, and if you see that your O2 is staying up quite well on "cpap", it might be cheaper to just have an occasional overnight check of that by the DME rather than buying it yourself.

scififan · Post by **scififan** » Sun Mar 16, 2008 6:13 pm

Thanks for all the good advice. I have ordered the CMS-505E Oximeter and will see what that tells me next week. I do have the two page report from the first sleep test and page one of the second sleep test. The second test does show the AHI going from 32.4 to .7 at 4 cm and down to .6 at 5 cm. The part that concerns me is the SaO2 which went from 66 (untreated) to 83 at 4 and 89 at 5. I wonder if perhaps they shouldn't have tried a slightly higher pressure to get the SaO2 up higher. I am scheduled to see the sleep doctor in about 3 weeks.

I will be asking to return the HC233 for one of the machines suggested by slinky or rested gal. Thanks again for all of your help!

goose · Post by **goose** » Sun Mar 16, 2008 6:57 pm

What everyone else said!!!!!
Slinky and RG covered most of what you really need....

I also titrated at 5cm.....I can't breathe at 5cm. I'm presently at 10cm and doing well....

You have a "basic machine" because it's the machine that provides your DME with the most profit.....

Ask your doc for a brand/model specific prescription (RG's suggestion is a great one!!), then be a thorn in your DME's side until you get what you need.....
Make them understand that their profits are not your worry -- your health and treatment is what you are concerned with and they don't seem to be supporting the best treatment....
Sometimes it's easier to work through the doctor -- especially if you have a good one -- because he/she can write specific scripts that the DME can't really dispute......

Good luck -- take care, and keep us up on how you're doing....

cheers
goose

Gerald · Post by **Gerald** » Sun Mar 16, 2008 8:46 pm

SciFi........

You're in a position where you need to move fast....and that means you may be somewhat "information deficient". In other words, you still don't have a full understanding of all the variables.....and this knowledge comes in time.

For now, listen to what Rested Gal says......and follow her advice. She is generally recognized as the one "who knows". Because you can't absorb all the knowledge you need "overnight", it's profitable for you to lean on Rested Gal's experience....and go with it. No one is "perfect"....and Rested Gal would be the first to tell you that she isn't perfect.....but, if you follow her lead, your mistakes will be far, far fewer.......and you'll be able to safely make your moves quickly.

At this point, you seem to be on the right track. Having your own Oximeter is vital.....and once you realize that you need to keep your blood O2 saturation levels at 93% or above all night....every night......you'll quickly bring your own therapy under your own control.

Boiled out.....the bottom line is this: Those of us who suffer from sleep disordered breathing are actually suffocating ourselves every night. What we're fighting is suffocation.....a lack of sufficient O2 while we sleep.

Once you start monitoring your O2 levels.....and get them under control, you'll quickly figure out the most comfortable....and practical....methods of therapy that'll maintain the O2 levels you need for good health.

What your AHI "score" is....and whether or not you snore.....is only a "clue" that your O2 is below where it should be while you're sleeping. Keep your eye on the ball (your O2 levels).....get good tools (equipment with reporting software).....and you'll do fine.

You're off to a great start. There are plenty of nice people on this forum who'll do all they can to help you succeed.

Gerald

rested gal · Post by **rested gal** » Sun Mar 16, 2008 8:55 pm

scififan wrote:I like the idea of monitoring my own progress. Should I ask for an APAP machine with software capabilities? If they refuse, I have no problem with buying it myself. Is it worth it?

If you decide to buy an autopap out of your own pocket, your present prescription for "cpap" is good for buying either a cpap or an autopap from cpap.com. The prescription doesn't have to say "autopap"...just the word "cpap" will let you buy an autopap online.

Yes, it's worth it -- autopap and software -- if you are really into wanting to monitor your treatment and do your own tweaking.

If you find you do better on one straight pressure, an autopap can be set to operate just like a straight cpap machine. Two machines in one.

Slinky · Post by **Slinky** » Sun Mar 16, 2008 10:41 pm

Keep in mind Resmed has set a minimum ADVERTISED price policy. My understanding of Respironics' will also be a minimum ADVERTISED price policy. Try asking the various online DME suppliers you might be inclined to deal w/if they happen to have an "unadvertised special" on the equipment you are interested in, or negotiating for a better than advertised price. Nothing ventured, nothing gained.

scififan · Post by **scififan** » Wed Mar 19, 2008 3:17 pm

Well, I have the Respironics M Series Auto CPAP with A-Flex and the F&P HC 150 Humidifier on order from cpap.com. I also received the CMS-50E Oximeter yesterday. The documentation was definitely lacking, but it does work. It documented 5 events where the SpO2 level was between 85 - 89. I look forward to seeing what a higher pressure does for the readings. Thanks for the recommendations everyone!

scififan · Post by **scififan** » Sat Mar 22, 2008 7:43 am

I have all of my equipment now, again thanks for everyone's input. Particularly the Ayr's Nasal Gel, that really helped with the sore nose.

I think I'm going to need several more days of data to understand what the reports are telling me. The first night with the new APAP machine I tried the Auto function with a range of 5 to 10. I'm not sure how well that worked, because I ended up taking the mask off at 2am because my nose was so sore.
I used the Ayr gel last night and that really helped a lot!

I also didn't get the SpO2 reading for that night because I screwed up the download and accidentally started a new recording.

Last night I set it for 7 in CPAP mode and slept through the night fairly well. My SpO2 levels seem to be a bit better than when using the HC233 set at 5.

I had 5 events in the 85 - 89 percent range with the HC233 set at 5. I had 1 event with the M Series set at 7. The one thing that puzzles me is the AHI reading I have from two nights with the M Series machine. My AHI for both nights was at 8.0. During the titration sleep study my AHI was at 0.7 at a setting of 4 and 0.6 at a setting of 5.

What the titration study doesn't tell me is how many times did my SpO2 drop down (all it says is Min was 89.0).

I'm going to stay on the CPAP setting of 7 for a few more days and see if my results change any.

One question on the EncoreViewer reports: The Daily Events per Hour chart was displayed for the same day 3/20/08 both on the report I printed on 3/21 and 3/22. The second report also included a Summary of Daily Events per Hour, which had the same exact numbers as the 3/20 Daily event report. Am I missing something here, or do I just need more days of data?

Any suggestions are welcome

bap40 · Post by **bap40** » Sat Mar 22, 2008 8:54 am

I have been on therepy for just 6 weeks and was first given F/P 604. Nice machine but not data capable. After these kind people kept telling me to not SETTLE for a non data machine, I bit the bullet and ended up firing my "BAD LADY" DME and went to another place, where they gave me exactly the machine I wanted, Mseries A/Flex. I did this before the 2nd month of rental went into affect so there would be no hassles. Insurance was contacted before I switched and gave the okay to change places and since the sleep doc was affiliated with that DME place, my own family practice doc wrote me a script in the exact way to get me the machine I wanted. I had many issues with the first DME not wanting to switch me out and we did not ever see things the same way. I am very happy with my new DME. What a difference this switch has made. Also, I have found that my pressure requirements are indeed higher than the sleep clinic put me. All because of an auto machine. On straight CPAP, I never would have known that!

Good luck,
Brooke

Wulfman · Post by **Wulfman** » Sat Mar 22, 2008 9:24 am

bap40 wrote:I have been on therepy for just 6 weeks and was first given F/P 604. Nice machine but not data capable. After these kind people kept telling me to not SETTLE for a non data machine, I bit the bullet and ended up firing my "BAD LADY" DME and went to another place, where they gave me exactly the machine I wanted, Mseries A/Flex. I did this before the 2nd month of rental went into affect so there would be no hassles. Insurance was contacted before I switched and gave the okay to change places and since the sleep doc was affiliated with that DME place, my own family practice doc wrote me a script in the exact way to get me the machine I wanted. I had many issues with the first DME not wanting to switch me out and we did not ever see things the same way. I am very happy with my new DME. What a difference this switch has made. Also, I have found that my pressure requirements are indeed higher than the sleep clinic put me. All because of an auto machine. On straight CPAP, I never would have known that!

Good luck,
Brooke

There ARE fully data-capable straight-pressure CPAP machines.....like the Respironics M Series Pro, the ResMed Elite and the PB 420SP. One does not NEED an Auto to monitor and fine-tune their therapy......just the data and a way to interpret it (software).

Den

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