Soon-to-be-xPAP user seeking advice

[fisamo]

I'm a not-quite-yet xPAP user, and I'm very glad that I took the time to search for information on what I'll be getting into for the rest of my life. The wiki and recent threads here have been a gold mine of information, but I still have a few questions about getting started. This may get a little long, and I'll try to give a little more background info after my questions, but please ask for more info if needed.

I value the advice given in the Wiki supporting an initial rental period - will my initial machine be 'right' for me? will I be compliant? (the answer to that one is yes--if I'm not compliant, I'll be snoring on the couch! ) Since this would be my first machine, I'm weighing the go-it-alone approach (purchase outright from cpap.com or similar) against the visit-the-DME-and-see-what-happens (how receptive would they be to my specific machine/model request) approach. I like the thought of being able to try more than one machine before shelling out hundreds (would be reimbursed), only to find that I'd rather have a different model (would not be reimbursed). But, as I'm looking at the newer models of auto-titrating machines (ResMed S9, Respironics M series or PR System One, PB Sandman Auto HC - leaning toward ResMed S9) I'd think I could get any of these models set to be 'right' for me, so I wonder how valuable an initial rental period would be for me. Any comment on the pros/cons of ResMed vs Respironics vs PB?

My insurance seems to prefer a rental model (the rep indicated indefinite rental, which is not consistent with the nebulizer rent-to-own we did for our asthmatic child a few years ago), which - if the rental period turns out to be limited (8 mos or less) - would mean no difference in out-of-pocket for me (rent vs outright buy). If I were to purchase, the insurance rep told me that they would cover the first device (at non-network rates if purchased out-of-network), but they would not cover a second device unless 'medically necessary' (e.g. this one breaks beyond repair or my needs change beyond the capabilities of the existing machine). I'm also wondering what my options are in regard to changing out a rental machine. (Perhaps this will be best asked of my DME, but I'd like to go to that appointment armed with others' experiences!) Say I'm on a rent-to-own plan and I decide I don't like my machine after two months - before the rental is converted to an outright purchase. What are my options? Can I return the rented device and obtain insurance coverage for purchasing (or starting rental of) a different machine model? I realize that insurance plans vary and that I'd have to confirm any advice given here with my plan, but general advice in this area would be helpful.

Based on my discussion with my primary MD, I don't think he's very familiar with the machines out there, and would end up writing a script for whatever the DME recommends. I'd like to be sure I have a data-capapble machine, ideally auto-titrating (I intend to lose weight as part of my treatment), and I'd like my visit with the DME to be positive, not confrontational. I've seen plenty of warnings here about how the reimbursement model does not encourage the DMEs to look out for their patients' interests, so I'm going in with my eyes open. Any general suggestions for keeping the visit positive would also be appreciated.

Masks - for my titration study, I used the ResMed Swift LT (medium), and it seemed to work well. (I didn't rip it off my face, or anything. ) Is there any reason to not use that mask? I also like the look of the Swift FX, and I am intrigued by (but not yet sold on) the cpap-pro (no headgear, boil-and-bite upper jaw mouthpiece instead). Any advice on either of these masks? I had originally thought the head straps would be a problem, but over the one night in the Swift LT, I didn't notice the straps as much as the physical pressure from the mask on my nose needed to form the seal (which I quickly adjusted to).

A little background:
I've not yet been on a machine (not counting my titration study), and I've not yet visited the DME.
I have a copy of both my initial sleep study notes and the titration study notes. My AHI and O2sat during the initial study (no treatment) were enough to confirm the need for treatment (~ 18 and as low as 83%, respectively), and my titration study yielded a suggested therapeutic pressure of 7 cm H2O.

Thanks, all!

[cflame1]

Ok... with a pressure of 7, you shouldn't have a problem with either a CPAP or an APAP... probably just take your pick.

Masks though... I'd get a couple... especially seeing as you're starting out. I'd start with the one from the study... but I'd also get a full face mask for colds and general stuffiness.

Welcome!

[kteague]

Hi and welcome. Does your titration report show that you had a good deal of time recorded while in REM sleep? And while supine? If so, the pressure reached is likely close to your usual needs. Getting an apap would better "hedge your bets" in case things change for you in the future, and can also be used in cpap mode. The data in apap mode is a bit more detailed. That said, many cpaps are data capable, and adequately meet the needs of the person with garden variety OSA. Does your report mention any other issues, like centrals or complex apnea? The only deal breaker for me would be that it must record treatment data, not just compliance data.

It sounds like you are a person who does their homework before making a decision. Be sure to write specifically the machine you want. Many sound similar. About that endless rental - if you have a co-pay, ARGH! The endless rental is I think intended to mitigate hassle and expense in regards to warranties and repairs etc. It seems insane to me that an insurance company would agree to that. But, there is a manufacturer's warranty on the machines if it goes bad. My machine's is 2 years. Ask the DME their policy on if a rental machine is lost or damaged, not defective. What is your responsibility? And confirm the contract you sign says the same. I would think you will run into some problems "trying out" machines even if they are rentals. Are the rentals new or refurbished? If new, no place is gonna want to switch them without there being a need, as in you are totally unable to use the previous machine. Which would make it a medical necessity anyhow. Clarify any contractural commitment to a rental period, and if any penalties for short rentals.

Sorry to throw so much at you. Just more to consider. Let us know what you decide.

[fisamo]

Hi and welcome. Does your titration report show that you had a good deal of time recorded while in REM sleep? And while supine? If so, the pressure reached is likely close to your usual needs. Getting an apap would better "hedge your bets" in case things change for you in the future, and can also be used in cpap mode. The data in apap mode is a bit more detailed. That said, many cpaps are data capable, and adequately meet the needs of the person with garden variety OSA. Does your report mention any other issues, like centrals or complex apnea? The only deal breaker for me would be that it must record treatment data, not just compliance data.

Thanks for the welcome and the comments. If I'm reading the titration report right, total REM time was about 1 hr, 45 mins. No mention in the titration study of sleep position, but the first PSG indicated 0 central events (one out of over 100 mixed--not sure if that's significant; MD who read the study didn't seem to think so), and the original PSG indicated AHI of 37 supine, ~18 overall, ~9 during REM. While on the titration study (max pressure 9), the AHI was 0.7.

It sounds like you are a person who does their homework before making a decision. Be sure to write specifically the machine you want. Many sound similar. About that endless rental - if you have a co-pay, ARGH! The endless rental is I think intended to mitigate hassle and expense in regards to warranties and repairs etc. It seems insane to me that an insurance company would agree to that. But, there is a manufacturer's warranty on the machines if it goes bad. My machine's is 2 years. Ask the DME their policy on if a rental machine is lost or damaged, not defective. What is your responsibility? And confirm the contract you sign says the same. I would think you will run into some problems "trying out" machines even if they are rentals. Are the rentals new or refurbished? If new, no place is gonna want to switch them without there being a need, as in you are totally unable to use the previous machine. Which would make it a medical necessity anyhow. Clarify any contractural commitment to a rental period, and if any penalties for short rentals.

Sorry to throw so much at you. Just more to consider. Let us know what you decide.

Sometimes I'm good about doing the homework - since it's a a product with significant cost intended to provide therapeutic benefit to me, hard not to research this one. (The info on this board has certainly demonstrated that need.) Thankfully, I have co-insurance, not co-pay (got burned by that one on my previous plan), but a high deductible that my PSGs used up - I'd like to not pay the deductible on the machine rental next year. Our thoughts are similar on the 'swapping out rentals' idea/issue; haven't yet been to the DME, and I intend to go prepared. So don't feel bad about throwing questions I should consider at me!

Ok... with a pressure of 7, you shouldn't have a problem with either a CPAP or an APAP... probably just take your pick.

Masks though... I'd get a couple... especially seeing as you're starting out. I'd start with the one from the study... but I'd also get a full face mask for colds and general stuffiness.

Thanks. I'm liking the thought of APAP, and I'll definitely look into having more than one mask.

[Madalot]

Welcome to the forum! It's great to see that you've been reading here and already have a good sense of available equipment and such. You are so ahead of the game! I wish I had known about this forum before I started my journey.

While I know my situation is not typical for people that start CPAP, it does illustrate a view that might be helpful to you. In my case, going through a DME was smart since after month on CPAP, it was determined that I was actually getting worse and switched to a BIPAP machine. After a month on the BIPAP, they figured out that I needed way more serious help and switched me to a ventilator.

In my case, it was easy to change machines to suit my medical needs. Purchasing outright would have made that more challenging.

Masks: The DME gave me the same mask I used during my titration. While I was okay during the titration, I had horrible problems once I used it at home. After three nights and only one of those was a full night because I gave up the other two after 3-4 hours, the DME switched me to a full face mask. I was able to "try" a lot of different masks and if I didn't like them, just give them back to the DME.

I'm not saying that going through a DME (and not purchasing outright) is the ONLY right answer for everyone. Everyone's situation is different. It never occurred to me that I would FAIL cpap AND bipap, only to be put on a ventilator. Had I purchased the machine(s) outright, I would have had serious difficulty.

Please keep posting and let the board know what you ended up doing and how it goes.

[gpk111]

Fisamo,
I tried two different masks and machines with marginal (at best) compliance. The S9 with the Swift FX, coupled with ResScan data, got me into a whole new and enlightened world of therapy. My pressure is at 6-7, so we're in similar boats. I urge you to consider that path.

[fisamo]

The DME my doctor referred me to seems willing to only sell me the S8 Escape. I'm not too happy about that. But, all it took was a quick phone call, and I canceled my setup appt with DME #1, and DME #2 (who I had contacted earlier this morning) seems much more willing to sell me an S9 Autoset. So it looks like my therapy start is delayed by another day or two, but given the differences in machine capabilities, I think it'll be worth it.

Stay tuned-- full story at 11... OK, more likely Wed or Thurs.

[Jersey Girl]

Good for you Fisamo! You stick to your guns and you WILL get your S9. Let us know how it goes for you.

Regards,

Jersey Girl

[park_ridge_dave]

The DME my doctor referred me to seems willing to only sell me the S8 Escape. I'm not too happy about that. But, all it took was a quick phone call, and I canceled my setup appt with DME #1, and DME #2 (who I had contacted earlier this morning) seems much more willing to sell me an S9 Autoset. So it looks like my therapy start is delayed by another day or two, but given the differences in machine capabilities, I think it'll be worth it.

Stay tuned-- full story at 11... OK, more likely Wed or Thurs.

Good Luck And Good Job You voted with your feet (in this case telephone but you know what I mean ) the first guy was trying to "maximize" profit and now s/he gets squat

Dave

[DoriC]

I'm happy to see you're doing your homework as I did before the DME came to set my husband up. Of course she brought the M Series Plus model(Respironics equivalent to the Resmed Escape). I was ready for it and made her take it back and it delayed therapy for a few days but we got the machine we wanted.

[fisamo]

I'm happy to see you're doing your homework as I did before the DME came to set my husband up. Of course she brought the M Series Plus model(Respironics equivalent to the Resmed Escape). I was ready for it and made her take it back and it delayed therapy for a few days but we got the machine we wanted.

Heh.. I don't yet know just how glad I am for doing my homework - I suppose I'll never really know, since I won't have that other machine. Don't get me wrong--I do think that the other machine could have provided effective therapy. After all, if it's not safe and effective, it's not allowed on the market (I know--premarket review is not perfect, and recalls do happen). But I'm paying for optimal therapy, and I know that the S8 Escape will not give me as good an experience as the S9 Autoset will.

Thanks all for your support. I know that if I had not found this forum before getting my equipment I'd be using the Escape - very likely happier than I am now, but probably wondering if I was getting the best therapy. Looking forward, though, I do believe DME#2 is in my corner. I'm still waiting to see if my doctor will complete the paperwork on his end in a timely fashion. Since this is the first chronic condition I've had to deal with, I do not really know how responsive he is in general. I can't say I have any reason to complain yet, but right now he does have a tinge of guilty-by-association, and while he was happy to refer me for the sleep study and seems competent enough, I don't think he was planning on doing the follow-up visits with me. (The sleep center had had referred me to for the studies was also DME#1.) That situation leads me to wonder how interested he would be in truly partnering with me as I start my therapy. Please understand, I'm not accusing him of being uninterested, just at the point of wondering right now. But the next few days should give me a pretty good idea...

[fisamo]

Update:

So DME#2 wants to sell me a ResMed S9 Elite (not AutoSet), claiming that based on what's written on the prescription, he cannot sell me an AutoSet. The mgr spent a while on the phone with me, and I explained that the AutoSet can be set in CPAP mode, which he ultimately agreed with (after originally trying to tell me that the AutoSet is a BiPap machine ). However, he also told me that he spoke with the president/owner of the company who told him that the prescription *MUST* say 'autoset requested' (or similar language), or they 'have to' sell me an Elite. Despite everything I've seen here about not needing the prescription to say 'auto' in order for the DME to provide an Auto, this DME is clearly going to hold firm to that position.

I've put in a request with my doc to have the prescription revised accordingly, but I don't know as if it will be done in time for my equipment delivery appt (late this afternoon). I really want to start my therapy, but I also don't want to go through the hassle of getting set up on machine A only to exchange it out (if that remains possible without paying out of pocket) later for the better machine.

So here's my question: How hard should I push for the AutoSet? Should I take my Elite and run? Right now, I'm still inclined to fight, but I do need to balance my desire to 'get my way' with what is truly optimal therapy. Any advice?

[gpk111]

Fisamo,
In my humble opinion, waiting a day or two means NOTHING compared to the time you've waited for your treatment and the time you'll be spending with it in the future. Cancel the appointment if you have to and wait for the right equipment. It's not even close in my book!

Good luck!

Gerry

[fisamo]

Thankfully, no need to wait. I ended up contacting my doc and asked that the Rx include mention of Autoset device. I got a call back about 2 hrs later (in plenty of time for my DME appt) saying that the revised script was ready for me to pick up. I have my S9 AutoSet sitting here at home now! Now, I just have to figure out how to use the thing! (No, I don't think it will be hard.) I'm looking forward to a good night's sleep - hope I'm one of the lucky ones who notices a world of difference tomorrow.

[gpk111]

Go Fisamo!!

I wouldn't expect miracles, though. It may take you a week to get used to the monster! Just trying to set expectations!