First Night report and some questions

I'm so glad to find this site. It's helped me a lot in my research since my dx. Even though I could see many great suggestions about how to select the machine and mask and how to deal with DME's I opted to just go with whatever the DME recommended so I could get it started by 12/31 because the deductible had been met this year.

This brings me to my first question. When I had the sleep study I didn't think to check and see if they were also DME providers. I usually make it a rule never to get tests done by labs that also sell products. After the sleep study I found out that they would be the recommended DME by my dr. To me that puts the whole dx in question. (Call it my belief that there can be a conflict of interest and over-diagnosis.) What do you all think of this sort of thing?

I didn't have a lot of time to really develop a strong opinion about equipment. (But this site is for sure where I'd go to learn! You've been helpful in helping me gain whatever opinions I currently have.) I knew I wanted the heated humidifier. The cold dry air was my father's biggest complaint about his cpap (which he only ever used about 3 times 10 years ago!) I asked the person that was doing my insurance pre-auth what kind of machine they'd be recommending. She told me it would have the ramping feature that I need and the heated humidifier and that I didn't need bipap. I asked about data options and she told me that I'd end up paying for that on my own (not an expense I want at this time). She said my best indicator that it's working well is going to be how I feel. She told me that they were recommending a nasal mask based on the notes at my titration study. I guess all the tweaking the guy was doing that night he was making note of.

So, I got my equipment as indicated below. I like the comfortgel mask. I did have some trouble with condensation (are you calling that rain-out?) But it was easily resolved by taking the humidifier down a few settings. I LOVE the humidifer. I've had the flu since Christmas and was worried I wouldn't be able to breathe through my nose. It was terrific.

I woke up a few times to cough my lungs out. This brings me to my next question. I was very scared to just cough. It seemed that if I opened up my mouth I felt like I was suffocating. But sometimes I had to cough before I could wake up enough to get the mask off. Is this a normal sensation?

My husband was astonished when I woke up at 7 this morning and was completely alert. He's always said that I wake up like someone with a hangover (even though I've never had a sip of alcohol my whole life! lol) I do feel pretty good today. But I am still a little tired. Maybe I've just got a lot of sleeping to make up for. The machine says I slept for 8 hours. So I guess I'm off to a good start.

Welcome aboard frazzeled. I wouldn't worry about them doing the sleep studies and selling equipment. I had that concern with the place I did mine at and that worry passed quickly. You had a reason for going and probably just needed confirmation that you had OSA Obstructive Sleep Apnea.

When they bill out a machine they have a code for cpap doesn't matter if its a cheap baseline one or fully data capable, they are getting reimbursed for a set amount. So that was not completely honest. You could have a fully data capable machine. I know you just wanted it but if you want call your insurance company and ask them. Then call your doc and tell him you want a data capable machine. Or call the DME and tell then you talked to your insurance and that they lied to you and you want a fully data capable machine or you will take your business elsewhere.

You also want a copy of your script for the machine and mask. You have a right to a copy of that so get it. Your doc may also write a letter stating medical necessity for both of these. Make copies and keep a copy with the machine for when you travel.

But it sounds like you are doing great. As far as what she said about how you feel. How you feel is what matters. If your numbers are great and you feel like crap something is wrong, but if your numbers are crappy and you feel great well then that's a different story. If your numbers are crappy but you still feel better you can work on those numbers but if doing so makes you not feel as good let it be.

Welcome aboard again.

Gerry

I see that you are using the ResMed Tango-----I really like the ResMed S8 Autoset II. It is fully data capable.....

As for the condensation, that's rainout. You can search and find several solutions like covering the hose, bringing the hose under the covers with you, turning down the humidifer, but purchasing the Australian heated hose from http://www.sleepzone.com has been the clear answer for me.

I'll PM you with some links for manuals, etc that you might need if you are to continue with the ResMed line of machines.

Also........please share your pressures with us. Many can at least share what masks worked for them at the same pressures.

frazzled-snoozer wrote:I'm so glad to find this site. It's helped me a lot in my research since my dx. Even though I could see many great suggestions about how to select the machine and mask and how to deal with DME's I opted to just go with whatever the DME recommended so I could get it started by 12/31 because the deductible had been met this year.

First of all, welcome to the forum. Glad to hear your 1st night went so well.

I have a comment about your choice of cpap. If your decision to accept the Tango is a financial one, then that is a consideration. I understand that insurance, deductibles, and end of year complicates the matter. Do you know how much your insurance will pay,and do you have a co-pay? Sometimes the cost of the co-pay is more than what the cpap would cost on-line. I have a friend who got the Resmed Elite II and his 20% co-pay was $600, and then found it for $438 on-line.

If you've been reading here, then you already know that a fully data capable machine allows you, and your health care provider to monitor your progress, and if and when your mask is leaking and whether it's affecting your therapy. Personally, I would not settle for anything less.

However, we will still be your friends, whatever you decide.

I looked up the Resmed Tango, and here is a chart comparing the various models:

http://www.resmed.com/us/assets/documen ... er_eng.pdf

Most notable are the lack of:

EPR--exhale relief
Mask Fit Function
Leak detection
Automatic leak detection
Automatic altitude adjustment
Cannot use with 12 volt DC
And, no data capability except for compliance hours

FrazzledSnoozer,
We started our therapy the same day; sorta like sharing a birthday, isn't it? I had the same suffocating feeling when I tried to take a sip of water in the night...don't know what that's about, but I wanted you to know it isn't just you. I expect one of the more experienced members can enlighten us about what causes that, but I wanted to chime in while we wait for them to share their knowledge.
Brazospearl

brazospearl wrote:FrazzledSnoozer,
We started our therapy the same day; sorta like sharing a birthday, isn't it? I had the same suffocating feeling when I tried to take a sip of water in the night...don't know what that's about, but I wanted you to know it isn't just you. I expect one of the more experienced members can enlighten us about what causes that, but I wanted to chime in while we wait for them to share their knowledge.
Brazospearl

I'm trying to understand your question. Do you mean sipping water with your mask on, and your cpap still on?

Thanks for all the help.

KatieW--I am actually a data junkie (proof--I'm a computer programmer) so not having the data options does bother me. But honestly, I've been feeling so terrible for so long it's been nearly impossible to delve into things the way I should. The old me would've researched this so hard I would've known exactly what I wanted and demanded it. But, the exhausted, confused me hasn't been able to advocate very well for myself. I figured I'd get started with the therapy, feel better, then come out a'blazin'. Not very good planning. But what should I expect...I'm a walking zombie!!!! lol As far as the costs--I have a 20% copay and it came out to $250. I'm not thrilled with that price. I was pretty sure I could've worked out a better deal or a better product for the price. But, I'm too tired to care...which has been costing me a fortune this year!!!! lol

I did alright for my 2nd night last night. But I had trouble falling asleep. And that's beyond bizarre for me. I'm accustomed to falling asleep as soon as my head hits the pillow. My dh thinks it's because I actually got real sleep the night before so wasn't as tired. He told me during lunch that it's just astonishing how different I look and sound! So...I guess I'm getting better! Yay!!!!!!

Brazospearl--I guess we're twinsies. How are you progressing?

Scrapper--My pressure is 10. My understanding is that it's a pretty mild pressure? The guy that did my titration said above 18 can be uncomfortable and he usually recommends a bipap for that. But for me I should be fine with cpap.

Frazzled-snoozer, I hear you. Sometimes we just have to set limits on what we are able to do. Glad to hear your therapy is going well, and that your husband has already seen the difference in the rested-you.

frazzled-snoozer wrote:I'm so glad to find this site. It's helped me a lot in my research since my dx. Even though I could see many great suggestions about how to select the machine and mask and how to deal with DME's I opted to just go with whatever the DME recommended so I could get it started by 12/31 because the deductible had been met this year.

This brings me to my first question. When I had the sleep study I didn't think to check and see if they were also DME providers. I usually make it a rule never to get tests done by labs that also sell products. After the sleep study I found out that they would be the recommended DME by my dr. To me that puts the whole dx in question. (Call it my belief that there can be a conflict of interest and over-diagnosis.) What do you all think of this sort of thing?

I didn't have a lot of time to really develop a strong opinion about equipment. (But this site is for sure where I'd go to learn! You've been helpful in helping me gain whatever opinions I currently have.) I knew I wanted the heated humidifier. The cold dry air was my father's biggest complaint about his cpap (which he only ever used about 3 times 10 years ago!) I asked the person that was doing my insurance pre-auth what kind of machine they'd be recommending. She told me it would have the ramping feature that I need and the heated humidifier and that I didn't need bipap. I asked about data options and she told me that I'd end up paying for that on my own (not an expense I want at this time). She said my best indicator that it's working well is going to be how I feel. She told me that they were recommending a nasal mask based on the notes at my titration study. I guess all the tweaking the guy was doing that night he was making note of.

So, I got my equipment as indicated below. I like the comfortgel mask. I did have some trouble with condensation (are you calling that rain-out?) But it was easily resolved by taking the humidifier down a few settings. I LOVE the humidifer. I've had the flu since Christmas and was worried I wouldn't be able to breathe through my nose. It was terrific.

I woke up a few times to cough my lungs out. This brings me to my next question. I was very scared to just cough. It seemed that if I opened up my mouth I felt like I was suffocating. But sometimes I had to cough before I could wake up enough to get the mask off. Is this a normal sensation?

My husband was astonished when I woke up at 7 this morning and was completely alert. He's always said that I wake up like someone with a hangover (even though I've never had a sip of alcohol my whole life! lol) I do feel pretty good today. But I am still a little tired. Maybe I've just got a lot of sleeping to make up for. The machine says I slept for 8 hours. So I guess I'm off to a good start.

First of all ... allow me to apologize for calling you a drive-by troll on this other thread. Just because you have a flawed view of the ideal healthcare system doesn't mean you have to suffer for it.

It is exactly a conflict of interest these all-in-one sleep clinics they are. However if your dad has been diagnosed with OSA, you do have a good probability for having it too (especially as you get older and/or if you gain weight above normal). Your PSG report will show the facts.

The most important thing about getting a machine is that it be one that provides “efficacy” data. It is very important that you know whether or not you are leaking system air pressure as that is the principle way by which this therapy works. Sure how you feel is a good indicator but if you happen not to feel so good with the therapy, you NEED the data to resolve the reason why you do not feel so good and the other efficacy data (ie. AHI pressure plots) helps to confirm the reasons. The DME is in business for your money ... not to make you feel good and certainly not for the benefit of your health (the reality of healthcare for profit but we don't need to bring that issue up again ).

Know that your insurance likely is renting the machine for the first month or first 3 months (that seems to be the way most work ... a policy that is supposed to help them save on costs). Check with your insurance provider about this (not the DME as they can and will lie to you if it means they will loose money on the deal). If your machine is indeed in a rental period, do not sign any more papers which may lead to full purchase. Simply return prior (prior is emphasized) to the end of the rental period. Then buy from online vendor because after all is said and paid for, the cost of buying from online vendor is often not a whole lot more than from DME and you get to control the whole deal instead of having to fight your DME tooth and nail out of their profit margin. Besides, online vendors gotta eat too right?

Next, contact the sleep study lab and ask (demand if necessary) for a copy of your lab results (the PSG report) ... not just the summary but the entire lab report ... it is your right to get this information. If you are on good terms with your referring PCP doc, you can have them send a copy to your doc and then get a copy from their office. While you are at it and just as importantly ... request the “original” signed Rx from the sleep doc ... this too is yours and often good for life or 99 years whichever comes first.

Machine preferences. In the end you may only need the simplest machine such as the Tango that you have. However, having an efficacy data providing machine puts you in the driver's seat and keeps the sleep lab/DME out of your wallet. Treating this condition is like diabetes ... the patient must participate and in many instances lead for optimal treatment. Like with diabetes, the patient must monitor progress or lack thereof and manage the treatment by tweaking machine settings, mask types, etc. The best machine is therefore one that offers the most options. An auto-pap (APAP) machine is best as most all of three major brands (Respironics, ResMed, P&B) offer efficacy data. Furthermore, an APAP can work in dual modes of either APAP or CPAP (two machines for the price of one). The Tango as far as I know does not offer any “useful” data. The DME may say that it offers compliance data but compliance data is useless to you ... profitable for them.

The mask is the hardest part of the treatment ... many to choose from and only a few will actually work for your unique facial morphology and preferences. It is not uncommon to go through several if not dozens of masks before you hit the jackpot. Be patient but persistent ... not give up.

In the end if you find yourself stuck with the Tango, you can always use it as a backup. Backups are very important as once you get this therapy under control ... you won't ever want to sleep without it again and if by chance/choice you do, the experience will encourage you never to sleep without it again.

Best of luck with your therapy!

Happy New Year, everybody!
Frazzled--Things are going well so far, thanks for asking. Still working on leak issues, but that seems to be improving. It's great to hear that your hubby can see a difference in you already!
Katie--Yep, I was trying to get a sip of water during a wakeful moment. But the whole suffocation feeling has happened another time or two. Any idea what's up with that?
Thanks to everybody here whose comments, advice, and experiences are helping me start this journey.

brazospearl wrote: Katie--Yep, I was trying to get a sip of water during a wakeful moment. But the whole suffocation feeling has happened another time or two. Any idea what's up with that?
Thanks to everybody here whose comments, advice, and experiences are helping me start this journey.

brazospeal, I suggest starting a new thread (just for you), and asking this question. Tell us what your titrated pressure was, and what your current pressure settings are, and what is going on when this happens. Are you suffocating on the inhale or exhale?

I usually take my mask off when I drink water, because it feels funny otherwise, so I've never experienced what you're describing.

DreamStalker, don't fret about calling me names. I tried to get back to that thread to expand on my thoughts and address your response but the message I typed got too long and I was just too swamped to get it put on there. I knew since I didn't get back to it I probably appeared like one of those drive-by posters. (I just hate those btw.) And I'm sure we can be friends even with your skewed view of healthcare!

Now that I've been working with the machine for a few days and can really identify the weaknesses I've decided to get in gear on Monday to exchange it. I was thinking the exact things you were suggesting DreamStalker. I'm going to contact the insurance co and get them on board with my plan. I'd like to make my plan work with this DME if I can. I like the idea that in my first year getting used to all this I can have their support. But if that's not going to work I'm going to do as you suggest with the on-line vendors.

The mask the DME gave me is probably my best choice to start. When I read about the different masks on this and other sites I was already leaning toward this one before they even picked it. My rep told me that I can exchange and test out new masks as many times as I want. But he did tell me that only one was covered at a time. If I wanted a 2nd one (like a back-up or alternate one) I'd pay $99. I meet with the RT this week. Due to the time crunch to beat the end of the year they sent it to me before my RT meeting. I guess they usually have the RT go over all the equipment with you first. I'm planning to use that opportunity to swap out the machine.

Brazospeal, I think I've figured out the suffocating thing. It's because the air the machine is blowing into your nose goes out your mouth causing a vacuum effect.

So all you great helpers...here's my next question. Is it to be expected that the pressure seems lower as you get used to it? Last night it seemed like it wasn't nearly as strong as before. I wondered if the machine was malfunctioning or I was having leaking (another reason data would be helpful).


Thanks

It does feel like less pressure as you get used to sleeping with the mask and machine. You're right. I hardly notice it at all anymore - haven't for a long time.

You just get used to it.