Full time RVer--CPAP newbie--what to expect??

[The Texan]

I'm in totally unfamiliar territory, after completing my sleep study last night. What do I need to know before meeting with the Pulmonary Doctor this week. We are RV full timers and as those that live in their RV know, extra space is at a premium, plus we spend time at altitudes from sea level to 7000', which I understand has effect on equipment. I've visited several websites, but that is not a substitute for actual experience in our unique lifestyle. My insurance is Medicare/Tricare.
Thanks

Our living space is approx 325 sq ft so size and weight of anything, does matter. How generous are the Insurance companies as far as paying for these devices? Just any information that would be applicable for a couple who roam North America with their home on their backs.

[Bluebonnet_Gal]

Howdy Texan!

I don't have any advice to offer you - no experience with RVing (except watching them heading south out my window at work late fall/early winter and watching them heading back North in the spring - and sometimes on stressful days wishing I could run out and flag out a nice set of wheels and ask the nice couple if I can tag along!)

But as a proud Texan, I just wanted to say I love your avatar!

[rested gal]

Welcome to the forum, Texan. I can't offer any advice specific to cpap'in' and RV'in' together, but something I'd want is a machine that can let you see information about your treatment -- AHI and leak info -- not just "hours of use."

My list of machines that record "full data" (AHI and leak info) and those that don't -- as of October 2008:
viewtopic.php?p=307168#p307168

[GumbyCT]

I'm in totally unfamiliar territory, after completing my sleep study last night. What do I need to know before meeting with the Pulmonary Doctor this week. We are RV full timers and as those that live in their RV know, extra space is at a premium, plus we spend time at altitudes from sea level to 7000', which I understand has effect on equipment. I've visited several websites, but that is not a substitute for actual experience in our unique lifestyle. My insurance is Medicare/Tricare.
Thanks

Welcome Texan,
You have not given us any specifics to go on, likely cuz you don't yet have any. But in general terms I think you can get along quite well. Most machines today auto adj. for altitude.

Write all of your concerns down as you think of them and be sure to ask your doc at your next appt.

Lots of good info here, if you are in the mood to learn. There is a very steep learning curve on the CPAP lifestyle.

Good Luck

[rested gal]

extra space is at a premium, plus we spend time at altitudes from sea level to 7000'

When you know whether you'll be prescribed a "cpap" (for insurance purposes, autopaps are are considered to be "cpap" and have same billing code as "cpap") or a "bipap", check out one of the links below to see feature comparisons. The comparison charts will show which ones have automatic altitude adjustment, the size/weight of the machine, and lots more info:

CPAP (the most likely type of machine you'll be prescribed)
https://www.cpap.com/cpap-compare-chart/all-CPAP

Autopap (automatic adjusting "cpap" -- varies the pressure as needed, or can be used just like a straight "CPAP")
https://www.cpap.com/cpap-compare-chart ... sting-CPAP

Bilevel (commonly called "bipap" -- has a higher pressure for inhaling, lower pressure for exhaling)
https://www.cpap.com/cpap-compare-chart/all-BiPAP

[MoneyGal]

As for space - I know space is at a premium for you, but a CPAP is about the same size as a small pile of paperback books. Mine is smaller than my toaster. I tuck it under my bed in a small box and hang the hose and mask over my headboard. I know it sounds like you have to find space for a "machine" but the machines are not that big and cumbersome.

Welcome and good luck.

[Bookbear]

Be sure you check if the altitude adjustment is automatic or manual. Many (but not all) cpaps and apaps adjust for altitude automatically. Cpaps are small units, and there are several on the market today that are especially small for travel. Check cpap.com, and check the dimensions. The new Sandman is small, so is the Aieomed, and the Zzz-pap.

[SheZAAM!]

Hey there!

I was a full time RV'er for 22 mos from Oct. '05-April '07!

But I didn't get my CPAP until just 2 mos. ago. I was actually first diagnosed before we went on the road, but blew it off until the effects got to be unbearable.

Anyway, the setup is small enough that it should fit on the little bedside table that you most likely have. The biggest obstacle I see is electricity. As long as you have at least a 30 amp hookup, (maybe even just 20amps) you'll be fine. If you don't have elect. hookups, you'll probably have to run your generator all night. You could try running your Cpap on your RV batteries, but you'll need an AC to DC inverter and you may drain your batteries anyway. It certainly can't hurt to try as many boondocking places have "no generator" hours from 10pm-7am.

What kind of RV do you have? We started in a '00 Georgie Boy 35' moho (gasser) and later traded up to a '04 Safari 40' diesel pusher.

[CorgiGirl]

Hey, Texan, Welcome to the forum.

We aren't full timers, but we do travel in our motorhome. My hubby and I both have APAPs. My first piece of advice is to get both an xPAP and a humidifier that run on 12v DC power as well as 110 AC power. There are probably others, but I know that our Respironics M series APAPs and the integrated humidifiers are both 12v capable. We also bought the Respironics 12v DC power cables. When we have at least 30 amps of shore power, we can both run our machines on AC with no problem. When we are bookdocking, we remove the AC power cord and use the DC cord without going through the inverter. We have electrical issues, so only one of us is able to use our APAP and humidifier when we don't have shore power. (The other one uses a battery pack.)

I am assuming that you have Tricare for Life, which covers your Medicare co-pays, right? In that case, you shouldn't have any out of pocket costs. But I don't know that for sure. Medicare rents your machines for 13 months and then you own it. I believe you'll be able to use just about any Durable Medical Equipment provider (DME) since most of them work with Medicare. I would avoid Lincare and Apria, if you can. We have had good luck with Walgreens Optionscare.

The machines don't weight much at all and we are both able to keep them on our night stands when we're stationary. We can't travel with them there because they'd fall off during driving, so we move them to the bed. You do have to remove the humidifier chamber before you move it. We just take them out and put them in the bathroom sink while moving. The heaviest thing you'll have is a gallon of distilled water for your humidifier.

I specifically asked for an Auto-PAP because of our travels and was informed that most of the newer machines will compensate for altitude changes, but I would be sure to verify that yours will do it before you accept it. The M series APAP does, at least that's what I was told. All of the standard recommendations apply here, too. Get one that is data capable so you can monitor your own therapy. There are lists of them you can search for on the forum, but the M series APAP with A-flex does. (I'm not necessarily pushing this one, it's just the one that I have experience with.)

Be sure to get a copy of your sleep study and your prescription so that you can get a replacement machine and/or replacement parts without having to have your doctor send the prescription first. This can save you days.

Feel free to send me a private message if you want to talk more.

[Sleepy Boy]

Hi Texan: When we have shore power-I plug my machine in right by the bed up in the corner by the closet. It fits good right there. When were boondocking, I draw off the inverter. Works great for me. We have a Montana 5th. wheel if that helps..Good Luck, and Welcome.

[The Texan]

Well after digesting all that you fine folks had to offer and also the good folks on my RV forum offered, I have narrowed the machine down to a Respironics M series, the model, A-Flex or Bi-PAP, depends on the Dr. I will make sure the Rx is written for the full complement of equipment, machine, humidifier, 12V power cord and whatever else I see a need for. Now it is time to delve into the abyss called the mask. I have no idea what some of the terminology is and what is and is not the way to go with them. I sleep mostly on my side, once in awhile on my back and never on my stomach. I also have GERD so must have my head and shoulders somewhat elevated. I'm trying to get my homework done before I meet with the Dr this week, so I can carry on an intelligent conversation.

[rocketdork]

Well, I don't full time, but I do spend a lot of time in my Motor Home, mostly dry camping or "boondocking" as its sometimes called.

Some things you'll find helpful (or maybe not).

The Respironics M series is what I have and have been happy with it. It does adjust automajikly to altitude.
I put it on the side table during the night. I plug in an inverter into the bedroom TV outlet and run an extension cord to the machine. I have a 400 watt inverter.
I find that if I run the humidity at 1 it will drain my 2 Trojan 105 batteries (225Ah) before the night is over, note that this is with the heater running too.
When I turn the humidity off, It lasts all night with ease.
I must run the generator for a couple of hours during the day to bring the batteries back up.
On shore power, I have no issues at all running my humidity settings where they normally are, at 1 most of the time.

Before I head out this spring, I plan to install a 12V outlet just over the table on my side of the bed, I am hopeful that this will make things easier, and I can get rid of the inverter. I am also hopeful that it will allow me to run the humidity during the night. It seems the inverter shuts down earlier than I'd expect.

An upgrade in batteries will certainly help my situation. At 225Ah's the trojans have been more than enough to run all the stuff I normally run during the day/evening, but the added load of the xPap machine is just slightly too much when its cold outside.

My motor home is designed more for the weekender, and less for full-timing, so I suspect that your batteries are much larger in capacity. If they aren't sufficient for running your xPAP overnight with humidity, you may want to consider increasing the number of batteries you have, purchasing a battery system specifically for the xPAP or changing you evening habits to conserve energy in the evenings when you aren't connected to shore power. I am also planning some upgrades to my MH to improve energy efficiency. Fluorescent lights through out the home is the first step. LED lights for the reading lights is the next step. A better water pump, and finally, 4 of the Trojan 105's.

Take a look a the Comfortlite 2 mask (link), I too am a side sleeper and find that having the hose come off the top of my head makes leaks go down (for me) and comfort go up. Masks are such a personal choice though, you may find you HATE it...but it works for me. It comes with a number of different options, two types of nasal pillow and one for an over the nose nasal type mask. The Nasal mask (called "simple cushion") is what I find the most comfortable.

I hope you find that becoming a hose head like the rest of us here changes your life as much as it has mine. No more run down feeling all day, struggling to stay awake all day and waking rested has made me a different person!

[CorgiGirl]

I would start out by having your doc write something like "equipment per patient's choice" on the prescription. This gives you a lot of flexibility, now and in the future. You can get the machine you want now and when you need to replace it in 5 years (that's the Medicare replacement schedule), you won't have to go back to you doc because the model she wrote for isn't being made anymore. Both my husband and I have this verbiage on our prescriptions and have had no trouble with DME's. I would have a specific machine written only if your DME gives you trouble....

As far as masks go, that's a really tricky thing. Most of us have tried several before settling on the ones we currently use. A big issue is whether or not you are a mouth breather. If so, you'll have to get that under control somehow before your therapy will be really effective. I am a mouth breather and my nose clogs up for a while during the night (every night) so I have gone with a full face mask. My husband, too. Other folks use that blue painter's tape or polident strips to keep their mouths closed so they can use a nasal/pillow/cannula mask. And others don't have this problem, so they can use whatever mask they like best.

My husband and I can't use the same type of mask -- our faces are too different. Mine is long and narrow and his is round and full. I like the Fisher & Paykel Flexifit 432, but he couldn't use it. He uses the Resmed UltraMirage. Tricare allows a new mask every three months. I don't know about Medicare... For a while, we got different masks each time we were eligible. But I was impatient! So I bought several masks from online vendors and from CPAPauction.com before finding the 432. I also swapped with others on the forum when that was mutually agreeable. I have sold some of the ones we couldn't use on CPAPauction.com. If your DME has several for patients to try on, that's a good thing. You can eliminate some that way. I'm a side sleeper and one of the reasons I like the 432 is that is doesn't have a big forehead piece. The UltraMirage and the Quattro both have wide forehead pieces. If your face is more like mine, you might try the 432. If it's more like my hubby's you might try the UltraMirage. It works well for lots of people.

I don't think that Medicare or Tricare will pay for the 12v power cord, so you'll be stuck with that expense. I wouldn't buy it from your local DME, unless than can match the online prices. I found it for a good price online.

Sounds like you're on the right track and ready to start your therapy! Glad you're with us.

[CorgiGirl]

I should also have said that not all M series integrated humidifiers are 12v capable, so make sure that's what the DME is giving you before you accept it. It's easy to tell by looking at the bottom of the machine. This one will also have the "J-tube" type of water reservoir which is less subject to leaks than the previous model.

[JimW203]

Well after digesting all that you fine folks had to offer and also the good folks on my RV forum offered, I have narrowed the machine down to a Respironics M series, the model, A-Flex or Bi-PAP, depends on the Dr. I will make sure the Rx is written for the full complement of equipment, machine, humidifier, 12V power cord and whatever else I see a need for. Now it is time to delve into the abyss called the mask. I have no idea what some of the terminology is and what is and is not the way to go with them. I sleep mostly on my side, once in awhile on my back and never on my stomach. I also have GERD so must have my head and shoulders somewhat elevated. I'm trying to get my homework done before I meet with the Dr this week, so I can carry on an intelligent conversation.

In general, I cannot offer specific experience-based suggestions; I can only draw on my own learning curve and knowledge of my brother's experience as a half-time RVer. Regarding a machine, I can tell you the things I wish I had known about when starting and what I would have tried to negotiate for.
1) CPAP vs APAP vs BiPAP: if I were beginning the process I would attempt to negotiate for APAP with some version of EPR (this is the function that reduces pressure while you are breathing out). On ResMeds it is known as EPR and on Respironics it is either AFlex or CFlex - how they differ I cannot say. The reason I would attempt the APAP is the machine's ability to modify its pressure depending on your moment-to-moment need. Given that you may often be between providers who know you, this may be very useful.
2) Brands and models: there are many - what I have found out is that ResMed and Respironics represent the bulk of what is sold in the US. Consequently, they are the ones most often stocked in depth by DMEs and are readily available at serious savings from CPAP.com and CPAPAuction.com. One major advantiage in dealing with them is that you can put your prescription on file there in the event you need something. No matter where you are in the US or when you need it, they can get it to you. Check their advice on how to have your script written for the maximum flexibility in machine choice. I would add though, that you add the ResMed S8 AutoSet™ II with Easy-Breathe plus its H4i humidifier to your short list. The biggest advantages I have noted is its integrated AC/DC power supply (no brick) and the capacity of the H4i (significantly larger than the Respironics).