First Night - Failed before it even began

[ArizonaGUy]

I was given a Respironics SleepEasy (I'm somewhat annoyed to learn it's basically barebones - cheap insurance weasels, or rather profit-hungry DME) and a Quattro FX. Did the demo in the DME, had no issues but I didn't do any of the hookups or button pressing. I simply watched and learned.

I was so excited for my first night, hopeful and looking forward to waking up to a world of difference. I had been playing around earlier, connected it all up just for practice. Then bed time approaches so I need to add water to the reservoir. I go to disconnect the tubing and it's unbelievably tight. I end up tearing the the tubing right where the connector is. Ruined my opportunity for the night. It's nearly brought me to tears since I was so excited about this.

Now with a useless hose I needed to disconnect it from the mask. That was just as tight and pulling it off pulled the mask apart - into 3 pieces. This can't be right. I certainly didn't push either connector (to the mask or the reservoir) as far as they could go yet disconnecting was ridiculous. I don't recall the RT having as much difficulty in the demo, though I wasn't looking for physical exertion on his part - you just don't expect to see that.

Am I doing something wrong?

[mars]

Am I doing something wrong?

Hi

I don't know, but do be gentle with yourself, as well as your equipment.

Sounds like another trip to your mask supplier is needed, and this time with a more hands on approach including having the mask on with the machine going.

Take your time there, and get all your answers before you leave.

And when you get home, expect a period of learning and experimenting to get the right therapy.

Incidentally, if you can swap for a better machine, go for that as well.

Good Luck

Mars

[MidnightOwl]

For the hose - duct tape is wonderful stuff in an emergency. And if that doesn't work hoses are relatively cheap. (Try online at cpap.com if your DME balks).

Is the mask broken or did it just come apart into it's component parts. Most of them are meant to disassemble since some parts like cushions get replaced more often than the shell of the mask.

I sympathize. This didn't happen to me but I was absolutely sure that it would the first night. Better luck tomorrow.

Lastly I agree with Mars about trying to get the machine upgraded to something with data if you can. But I've had another bottom of the barrel no data machine for about five years and it does work. Mostly.

[ArizonaGUy]

There are so many choices, I'm not even certain what machine I should hope to acquire. Does anyone really need "top of the line" systems?

The way this whole thing has worked out has irritated me. I've yet to actually be told much about my problem. The sleep center sent the script directly to the DME, bypassing my primary doc who was the referring physician. So I've actually not met with a sleep specialist directly. This has me frustrated immensely. My own doc clings to the idea that if I'm tired, I must be diabetic even though I knew it was a sleep problem. Endocrinologist blinders on. Simple blood test threw that out. Anyway, I digress.

FWIW, my AHI is apparently 7 so it's mild, and the Rx pressure is for 9.

[MidnightOwl]

There are so many choices, I'm not even certain what machine I should hope to acquire. Does anyone really need "top of the line" systems?

In my opinion no. "Top of the line" usually refers to systems designed to treat things other than basic apnea. You'll see references to "ASV" and "BiPap". You can pretty much ignore that. "Auto" machines or APAPs automatically change pressure and can be useful for people with high prescribed pressures though other people like them too. But there are machines in the middle - the so called basic "data capable" CPAP machines which are just like yours except they will track how many apneas you continue to have. Those are also unnecessary if everything is working fine with the basic CPAP. But if you need to troubleshoot - for instance you don't start feeling better - they are important.

The way this whole thing has worked out has irritated me. I've yet to actually be told much about my problem. The sleep center sent the script directly to the DME, bypassing my primary doc who was the referring physician. So I've actually not met with a sleep specialist directly. This has me frustrated immensely.

This is inexcusable in my opinion. Someone should have met with you before that prescription went anywhere. Some labs don't have sleep doctors that meet with patients. They just review studies the way radiologists just review xrays. But in that case your primary should have met and explained everything and been the one to write the prescription. If he didn't then among other things you may need a new primary care doctor.

Do you have a copy of the written reports from your study or studies? There should be two types of report for each study. One is a written summary. It's probably 1/2 page to a page long. The other is about 5 pages of graphs that show how many apneas and what kind you had, what time you had them at, what pressures were tried during the titration and how many apneas you had at each stage among other things. Your primary will definitely have a copy of the summary and you should also. You may need to contact the lab to get the other one. I urge you to get both even if you have no interest in learning to understand them yourself - because it sounds like you may need to be taking them to another doctor one of these days. And if you do want to learn more about them you can either ask here for help directly or to be pointed to reference books that can help you do that too.

My own doc clings to the idea that if I'm tired, I must be diabetic even though I knew it was a sleep problem. Endocrinologist blinders on. Simple blood test threw that out. Anyway, I digress.

FWIW, my AHI is apparently 7 so it's mild, and the Rx pressure is for 9.

He could be right. Even if it's not diabetes it could be something else. Just because you have apnea it doesn't mean that it's not some other condition that's making you tired. It's always a bit of a guessing game what to test for first. You'll know soon enough whether treating the apnea makes you less tired.

Lastly how are you paying for this? If you are expecting insurance to pay for it you may want to confirm that they actually will and that they will pay for it from the DME that it was sent to. The labs usually do a fairly decent job of this but it's ultimately your responsibility and if you don't take it you risk getting burned.

[robysue]

I was given a Respironics SleepEasy (I'm somewhat annoyed to learn it's basically barebones - cheap insurance weasels, or rather profit-hungry DME) and a Quattro FX. Did the demo in the DME, had no issues but I didn't do any of the hookups or button pressing. I simply watched and learned.

First, blame the DME: If the insurance company pays by code, it will give them the same $$ regardless of whether you a barebones, older model only compliance data CPAP or a "top of the line" current model ResMed S9 AutoSet with EPR or PR System One Auto with A-Flex. Only difference is the DME earns more $$ by setting you up with the cheaper equipment.

Next the SleepEasy is not only just a compliance-data machine that does not even have a form of exhale relief, it's an older discontinued model as well. The Resprionics SleepEasy looks like this:

Is that your machine? The similarly named SleepEasy II looks like this:

It is still offered for sale by our host, but I believe that it too is an older model or perhaps a recycled version of an older model and offers no efficacy data, but at least has an exhale relief system. Which machine looks like yours?

And yes, it makes a difference which CPAP/APAP you get. With a dataless brick the only standard you have for whether its working is the quirky, How do you feel? There's no data to help explain what's going wrong if the answer to How do you feel? turns out to be Pretty lousy. There's no way to determine if the problem is ineffective pressure or leaks or both. Read through JanKnitz's Help! I'm stuck with a brick and Data capable machines to learn more about what to do to get the right machine.

Next, the DME should have had you run through all the procedures yourself after they showed them to you. Including completely taking the mask apart (for washing) and reassembling it in the the tech's presence so that your disaster could have been avoided.

Others have mentioned duck tape for the hose. Yes, it works. But this was not your fault: The DME may have shown you how stuff works, but it did not teach you how to use the equipment.

My advice? I'd call the DME back and tell them (1) you want a more up-to-date machine and (2) you want them to watch you while you completely assemble and disassemble the equipment once or twice in the presence of the tech so that you don't tear up any more hoses.

[Sheriff Buford]

I duct tape the area on the hose that meets the rubber ends (that either attach to the machine or mask). This will give it strength. Also, take a very small film of vasoline and put it on the inside rubber connection of both ends of the hose and to the connection (fittings) on the machine and mask fitting. Take a napkin or rag and wipe off the excess vasoline. You don't want this stuff in your hose or mask. The little vasoline left on the fittings will allow the hose to slip on and off easily and not damage the rubber or silicone.

Another money-making DME... what else is new?

Sheriff

[Lizistired]

My hose connectors have always been somewhat tight. I wiped a little glycerine on the connector to make it easier to remove.

Get copies of both studies as Midnightowl suggested, and a copy of your PRESCRIPTION. You will need it should you decide to shop for another DME.

[Pugsy]

Ditto to what Robysue and the other have said. I was wondering why the need to remove hose to add water till I saw those pictures.. Horrible design. Look at the link to my machine in my profile. Adding water means sliding out the little tank through an opening in the front (I just lift up the lid)..there is zero need to remove the hose when I add water. Also there is no need to put the hose on so tight it can't be removed. For a person to end up breaking it simply means it was on way too tight to machine or the mask.

If this DME only supplies Respironics machines.. Ask for at least the PR System One Pro Cpap with CFlex.
It offers full data and is straight cpap pressure with exhale relief.
There is a PR System One Plus with CFlex and it does have a SD card also but only gathers hours of use..no other data.
My machine is the next step above the Pro.. mine is Auto or APAP machine so I can have varying pressures if I want or need but I can also use it in straight CPAP mode if I wish. So my machine is like 2 machines in one. Of course it also gathers all the data I need and I have software available to use to see exactly what is going on.

To try to monitor effectiveness of therapy based on how one "feels" is like flying blind. You have no way of knowing if you are feeling crappy because of a problem with the therapy or something else. If you are having bad leaks and no way to know it.. the standard "give it time and you will feel better" isn't a good way to go. No amount of time will fix a bad leak that you don't know about.

If they won't give you what you want...maybe time to think about a different DME that doesn't have the sleep doctor in its back pocket. Check with your insurance to see if you can use someone else.

[Janknitz]

Sounds to me like the torn hose did you a favor. Technically you have not used the machine. TAKE IT BACK TODAY!!! They gave you a very outdated old piece of junk several generations old--I wonder how much dust they had to blow off it when they dug it out for you???

Roby Sue already pointed to my blog. Read several of my posts--what you need to know BEFORE you meet your DME first, Help, I'm stuck with a brick, and the latest post, data Capable machines, will tell you what machines in THE CURRENT GENERATION are data capable.

Your DME has played you for a sucker, but you don't have to let them get away with it.

[Mary Z]

ArizonaGUy, sorry your first night didn't come off better. I've had one hose that fit particularly tight, but usually they're not that hard to remove. Whatever the reasons for the problems I wish you luck in getting things straightened out.
I don't blame you about being upset about how things went with the sleep center, your primary, and the DME, but the way things were handled is not unusual. That's one reason we stress doing research about the machines ahead of time so you know what you want. Not everyone needs a top of the line machine. If you're interested in following your therapy a data capable machine is a must. Still, many people do fine with the "bare bones" machines that only give compliance data. Not everyone is a CPAP geek. I have two friends on CPAP- very smart people- who are just not interested in following their data. All they care about is how they feel.
I admit having your hose and mask fall apart in your hands is a real bummer. You got some good suggestions for taking care of the problem. Remember, the hose is like an electrical plug- to remove from an outlet pull the plug, not the cord, so be sure to only pull on the rubber connectors rather than the tubing. If the DME assembled the machine I suspect he was a bit over zealous in putting the hose on tightly to prevent detachment during the night. Keep us posted, please, we would like to know how things work out. Good luck.
You can't blame the DME for trying to maximize profits. How many machines just end up in the closet? That's why we need to be educated consumers.

[mayondair]

Sounds to me like the torn hose did you a favor. Technically you have not used the machine. TAKE IT BACK TODAY!!! They gave you a very outdated old piece of junk several generations old--I wonder how much dust they had to blow off it when they dug it out for you???

Roby Sue already pointed to my blog. Read several of my posts--what you need to know BEFORE you meet your DME first, Help, I'm stuck with a brick, and the latest post, data Capable machines, will tell you what machines in THE CURRENT GENERATION are data capable.

Your DME has played you for a sucker, but you don't have to let them get away with it.

Ditto . Don't use that machine, take it back right away! Kathy

[xenablue]

Firstly - get your XPAP all set up LONG BEFORE bedtime. I've found if I leave this until I'm sleepy things go downhill quickly and badly.

I did the same thing with my flimsy hose - first night. DH rescued me with some silicon tape, which I now put on every new hose at each end where the hose meets the flange - just for extra strength.

Hang in there, it gets better and easier.

Try and exchange your machine for something that isn't regarded as a 'brick' on these forums - do it soon, before it's too late to exchange.

cheers,
xena

[ArizonaGUy]

Thanks for all the support. Just FYI - I misstated the unit I have by mistake. It is at least the SleepEasy 2 - it does have a Flex mode, plus Ramp as well. But you're all obviously correct in that it has no efficacy data.

I did manage to use it - once I got over my frustration my problem solving brain thought of tape. So I did use it for about 7 hours. Hope I can still return/exchange, I would like something better.

[ArizonaGUy]

Swapping for a ResMed S9.

The only "upcharge" is going to be $20 or so for replacement tubing. I'm ok with this since technically I ripped the hose. I can't say with certainty I was gripping only the rubber connector and not the hose itself (at least partially so) when disconnecting it.