CPAP- what should I ask at equip pick-up?

[ZinMe]

Hi,

I had a sleep study which classified me as severe (33?) although my ENT doctor said because my blood oxygen level never dropped below 91, she would say I'm moderate. Anyway, despite a miserable experience with CPAP during my sleep study, I'm going to give it my best shot. I'm mostly worried about my wife and kids laughing at me. Although, I feel motivated today as I am waking up more and more during the night. Yesterday I woke up at midnight until 2am and then again 4am with a horrible headache, presumably from breathing problems.

Anyway, I have an appointment to pick up my unit next week at Apria in Menlo Park, CA. (I'm not encoraged by their Yelp ratings.) I have no idea what the equipment and mask options are, so if anyone has advice on how to make sure I walk out with the optimal equipment and process, I would be very grateful.

I am also worried about traveling- my doctor said I don't have to bring CPAP with me, but I've heard elsewhere that once you start, your airway becomes used to CPAP and breathing without it become more difficult???

Thanks,
Dave

[Janknitz]

Slow down, Dave, and take a look at my blogpost called "What you need to know BEFORE you meet your DME" in my signature below. Call your insurance company so you understand how they are going to pay for this, and then look for my blogposts on data capable machines.

REFUSE to accept anything other than the following four machines:
ResMed S9 Autoset (DO NOT ACCEPT anything with Escape in the name!!!)
ResMed S9 Elite (see how they try to confuse you with another E name?)
Philips Respironics System One Auto
Philips Respironics System One CPAP Pro with Cflex Plus (NOT the CPAP Plus)

Make sure that you get a proper mask fitting and that you can return the mask if it isn't working out for you until you find the right mask. Don't accept limits on the number of returns--if they are going to play that game go find another DME. The mask is the absolute KEY to using the CPAP.

No, CPAP's do not cause dependency, apnea does. You will need to wear your mask all night, every night, no matter WHERE you sleep--even halfway across the world. It's hard to accept at first, but it's the reality.

[chunkyfrog]

Don't worry about the kids; If they laugh, point out it could be hereditary; they better get used to it.

[robysue]

PLEASE PLEASE PLEASE read through Janknitz's blog before you go to the DME. You need to be keenly aware of how your insurance will pay for the equipment AND you need to know your equipment options before you simply pick up equipment that someone else selects. Remember that you're the one who will be sleeping with the machine for the next five years or so, not the DME, not the doc, and not the sleep lab. Read up on the full efficacy data machines and make sure you know exactly what the name of the machine(s) that are acceptable to you before you accept any equipment.

As for the kids or wife laughing at you? It's better than having them cry ....

[xenablue]

Well said, Chunkyfrog LOL - best thing you can do is remind them it's hereditary.

Dave,
Please take janknitz's advice - don't back down with your DME or doctor on what equipment you need - regardless of what they try to tell you.

This is YOUR life, YOUR health and you have to sleep every night (forget what the doctor said - you DO need to take your machine with you when you go anywhere overnight or longer) with a mask strapped to your face. Don't settle for what they advise - make sure it's the best and most comfortable mask for YOUR face.

I had read a lot here before I got my machine, but was still a little ignorant and took too much notice of my DME supplier. Fortunately, I was given a great machine with data capabilities, and have changed to a great DME who is very obliging when it comes to trying new masks etc.

Hang in there - don't worry about the kids and wife laughing - tell them you're going snorkelling - make a joke out of it if you're that way inclined.

Cheers,
xena

[Greendirt]

Not sure how old your kids are, I told my little ones it was my 'robot mask' and pretended to be a robot with it on - astronaut or pilot or Darth Vader would be the same. Made a joke of it - everyone can laugh then. Also explained that it helps dad sleep and reminded them they are grumpy and feel lazy when they're tired, dad's the same and the machine is to fix that. They're all fine with it. My wife just likes to sleep without snoring next door.

The main thing with this CPAP thing, I think and the research seems to show, is how people think about it and what people believe about it. If one believes it's a burden and something to be laughed at over, then that's what it'll be. Believe it's fine and it will be because objectively it is.

As to travel, yeah, it's a bit of extra baggage and another thing to set up / pack up. But no biggie. I've travelled with the Philips, ResMed, F&P and will with my DeVilbiss IntelliPAP both on business (hotels) and camping. The last thing you want when you're away is to be more tired than normal via bad sleep through stopping therapy.

Of the four, the DeVilbiss is the best traveller since it packs into the smallest travel pack and has no power brick (major advantage). But they are all OK; follow the advice above as to what machines to get / avoid. Consider the IntelliPAP if you pay with your own money.

Enjoy the benefits the machine will bring, whichever one you end up with.

[archangle]

Anyway, I have an appointment to pick up my unit next week at Apria in Menlo Park, CA. (I'm not encoraged by their Yelp ratings.)

Find out from your insurance company if you have a choice of multiple DMEs (CPAP salesmen.) If you have trouble with one provider, walk out and try another. This applies to any DME, not just Apria. Do NOT go to one particular DME just because your doctor or sleep lab sent you there.

Then call ahead and find out what machine they're trying to give you. When they tell you it's an S9 Escape something or a PRS1 Plus, tell them you want one of the acceptable machines. They'll lie to you about what they can do and what the machines do. If it's midnight and a DME tells you it's dark outside, go check.

If they know you're going to walk away and take your business elsewhere, the story often changes.

I am also worried about traveling- my doctor said I don't have to bring CPAP with me, but I've heard elsewhere that once you start, your airway becomes used to CPAP and breathing without it become more difficult???

I'd be tempted to say your doctor is an idiot. Apnea is like the death of a thousand cuts. You die a little every night you're without it. However, maybe your doctor thinks your apnea is mild enough that you won't be harmed that much each night when traveling. If your apnea gets worse over time, you may find you need it more.

In theory, CPAP doesn't make your apnea worse. However, once your body and brain get used to not being strangled periodically during the night, you may find you can't sleep without CPAP. Also, if you're traveling on business or pleasure, are you really going to put up with that headache and a bad night's sleep just to keep from carrying the CPAP?

[Randyp1234]

Find out from your insurance company if you have a choice of multiple DMEs (CPAP salesmen.) If you have trouble with one provider, walk out and try another. This applies to any DME, not just Apria. Do NOT go to one particular DME just because your doctor or sleep lab sent you there.

Then call ahead and find out what machine they're trying to give you. When they tell you it's an S9 Escape something or a PRS1 Plus, tell them you want one of the acceptable machines. They'll lie to you about what they can do and what the machines do.

Definitely do your research here and thoroughly read Janknitz's blog! Like Archangle said - find out who your insurance company is contracted with and visit them. In my town there were two places that my insurance company contracted with and one other locally owned DME that has a very good reputation. I just dropped in each location and told them I was pretty sure I'd be needing a machine and asked what they had. I was more interested with their attitude than their answer at that point. From there I used what I learned on this board to decide what machine I wanted and when my doctor sent hem my scrip I called them and told them what to order. Amazingly enough, they did.

Randy

[ZinMe]

Hi,

Thanks everyone (Janknitz, Frog, RubySue, zenablue, Greendirt, archangle and randy) for your advice. It has been very helpful. The snorkling analogy worked with my 10yr old, and the genetic reference quietted my 13 and 15 yr olds.

Apria gave me a Phillips System One REMStar Auto A-Flex. It automatically backs-off the pressure by about 3 during exhale, which addresses the main issue I had during the sleep study. This machine is much better than what they used for the sleep study, And it has the data card. The nose pillow looks like its matches the recommended one and it fits well thus far.

The only issue was that they (doctor/insurance) did not specify a humidifier. I called my doctor during the pick-up meeting, and they faxed over a perscription. I should be able to pick up the humidifier this week. Interestingly, after two nights of use, I haven't had any unusual dryness, so perhaps I don't need it. Anyway, I'm not having any insurance issues, so that is good.

Both nights I slept about 6 straight hours without waking up, and then on again, off again for 2 hours, so not too bad. I noticed a couple of times my mouth was slightly open and I was making that bizarre sound, which may have woke me up. I had a little more energy than usual today, so it seems I'm getting better rest.

Next, I need to find out how to use, read and interpret the data card. I saw there is a $99 piece of 2.0 software I think I need to buy? Apria had no clue how to tell me how to access the data on the card. I also need to find out what kind of card reader I need.

Once again, thanks for all the input, advice and encouragement. I'm sure I'll be back again soon with more questions, but so far so good, in fact things are going better than I expected.

Thanks,
Dave

[ZinMe]

I am also worried about traveling- my doctor said I don't have to bring CPAP with me, but I've heard elsewhere that once you start, your airway becomes used to CPAP and breathing without it become more difficult???

I'd be tempted to say your doctor is an idiot. Apnea is like the death of a thousand cuts. You die a little every night you're without it. However, maybe your doctor thinks your apnea is mild enough that you won't be harmed that much each night when traveling. If your apnea gets worse over time, you may find you need it more.

Hi Archangle, my doctor said that unless my blood oxygen level was falling below 90, she would not insist that I use CPAP, and in the sleep study it averaged 95 and never feel below 91. However, she did say that CPAP was highly recommended. I asked her about a trip we are taking this summer. We are rafting down the Colorado river through the Grand Canyon in August, and we'll be without electricity for 6 days. In that situation, I'll have to see if there is a battery unit that could get me through at least a few days, but if not she said based on my sleep study I should be fine. So that is the context of the question, whether after using CPAP every night for six months I can go cold turkey for 6 days without having major problems.

[Lizistired]

Odds are that between now and August, you will sleep without your machine for some reason on at least one occasion. You'll probably find out you don't want to go without it.

[Pugsy]

PR System one users have multiple software options. I have explained them here along with some examples.
viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options

If your computer has a slot for the SD card (like for a camera SD card) then you need no other extra card reader.
If your computer does not have a SD slot then you will need a card reader/adapter for one of your USB ports.
Doesn't have to be a fancy named card reader...cheap generic from WalMart or similar store will work just fine.

I really like SleepyHead (and I have used all the other software choices). If your computer is a Mac there is even a Mac version available.
SleepyHead is available here
http://sourceforge.net/projects/sleepyhead/files/

User Guide for it here
http://sourceforge.net/apps/mediawiki/s ... sers_Guide

Do you have the ultra secret provider/clinical manual for the PR System one Auto? It offers more information than the user manual does. It also offers some definitions to some of the terms seen in the software reports.
I have the provider manual in pdf format. If you will send me a private message with your private email address I can send it to you as an attachment if you don't already have it. We can't do attachments with the forum message system.
Also if you want additional information about using either Encore Viewer 2.0 or Encore Pro 2.4.....I can help with that information also.

I would suggest using the humidifier. Most people need at least a little amount of added moisture. Get it for sure anyway. Better to have it and not need it than need it and not have it.

[Mary Z]

ZinMe, what has been the outcome with getting your new machine?
I went on vacation for a week this summer, now I have always used my CPAP on vacation and had it with me. I got a wild hair and decided I wouldn't use it that week. My roommate said if you have sleep apnea why would you not use your machin?. I used it, and don't think I could have slept without the machine. I sure wanted to feel good on vacation.

[ZinMe]

ZinMe, what has been the outcome with getting your new machine?
I went on vacation for a week this summer, now I have always used my CPAP on vacation and had it with me. I got a wild hair and decided I wouldn't use it that week. My roommate said if you have sleep apnea why would you not use your machin?. I used it, and don't think I could have slept without the machine. I sure wanted to feel good on vacation.

Hi Mary,

Thanks for asking. The last two nights have been a mixed bag. One night I just couldn't fall asleep for more than 30min at a time- the sound of the air rushing in and out of the tubing near my nose was bothering me. Last night was OK, about 5.5hrs of straight sleep and then on again off again for another two hours. When I woke up, my mouth was very dry last night, which hadn't happend before. I suppose my mouth could have been open. Anyway, I don't feel substantially better or worse from using CPAP so far. I'm still only a week into it, so we'll see how the next week goes.

Regarding travel, I would certainly take it with me if its possible, but for this colorado river rafting trip through the grand canyon we carry all our food and gear on the raft for the week and sleep in tents for six days. There is NO electricity, and I haven't yet heard of a reasonable size battery that will last for 5-6 nights. Apria mentioned a deep cycle marine battery but those are even bigger than car batteries so its not practical to bring them on the trip.

[Pugsy]

Regarding travel, I would certainly take it with me if its possible, but for this colorado river rafting trip through the grand canyon we carry all our food and gear on the raft for the week and sleep in tents for six days. There is NO electricity, and I haven't yet heard of a reasonable size battery that will last for 5-6 nights. Apria mentioned a deep cycle marine battery but those are even bigger than car batteries so its not practical to bring them on the trip.

I wouldn't even attempt to take my machine on the Colorado river even if I had a battery that would work.
Way too much chance of water damage even with the best of precautions.
Camping is one thing but river rafting the Colorado is a whole new game...lots of water...water very bad for the electronics in a cpap machine.

I envy you. I have always thought the Colorado would be a blast to raft (or the Snake river).

You know if I were in your shoes and didn't have O2 desats below 90 I would probably just go ahead and go on the trip without the machine on the river. Sometimes we just have to do things that we want to do.
Heck, given the chance I might even do it with my desats (low 70s) I would probably feel like total crap for a few days afterwards but the fun would be so worth it in my book.