Need help with CPAP for camper

ktmrfs wrote:
I guess I ended up with some reasonbly professional folks the two times I went in for sleep tests and machines. This last on I got recently, they went over the machines and which one they and the dr. had decided on would be best for me and why. Then I spent over 1 hour in the office going through mask options, trying several, picking what we thought would work best, getting fitted, doing a mask adjustment, mask leak test, trying several masks. Before we even started talking masks they wanted to know how I slept (back, side, stomach etc) and another 20 minutes going over all the features of the machine, what I was able to adjust or change, what the effects would be etc.

End result. first night everything was "easy peasy" and worked great. No fuss, no muss, minimal adjusting.

This is how the process should work. I'm glad you got up and running so well right out of the gate. I have known several folks who have experienced similar results.

Unfortunately, what Mexicowanderer and Empty Nest describe is still all too prevalent in the industry based both on my research (including in-depth discussions with my sleep doctor) and my own actual experience over the last 4 months getting a new machine issued and running.

There is a lot of good information in this thread.

In my case I've been on bipap since 1988 and have had the same great sleep doctor since then as well. My first sleep study was in the hospital, second one in a clinic, and the third one never happened because my doctor prefers to do the 'sleep study' in-home and with one of the newer data gathering machines. He has said that if not forced to do an 'offical' sleep study (some insurances) then he would never do an old-school sleep study again.

I've had two bipaps since 88, both happened to be respironic machines and they both worked really well. And of course neither of these old machines were data gathering machines. My doctor jokingly calls the newer data gathering units 'Big Brother' machines.

Earlier this year I decided it was time for a new machine (well beyond the 7 years or whatever it was that the insurance company requires). Visited my doctor and learned that the process had changed substantially since I last went through it years ago.

Back in the day the doctors office was responsible for not only the diagnoses, the testing, and issuing the prescription, but also specifying the required equipment, fitting the equipment, and selling the equipment. And then of course all the follow-up visits for machine and mask adjustments and such.

I didn't realize it at the time, but that vertically integrated method worked really well because the doctor was intimately familiar with all phases of the process. He had direct communications with the manufacturer's and provided them real-time feedback on the good, the bad, and the ugly on the quality of the various machines. All of the sleep techs worked directly for the doctor and all were in the same office. The various machines and related equipment were in stock in that office as well.

This benefited the patient as the doctor knew exactly what was going on each step of the way and could ensure that the patient would end up with the correct diagnoses, the correct prescription, the best machine and related equipment for the patient, have it set-up properly, and provide robust after-care to get the patient on the road to successful cpap therapy.

MM49 do you have OSA CSA or Mixed Apneas?

On another note a recording Pulse Oximeter? This is the Polygraph verification that your therapy is or is not working. Recording Pulse Oximeters are not expensive at all. If events of low blood O2 levels coiincide withca higher than average number for AHI it may be time to seek guidance. Having a pulse oximeter along on a trip to high altitudes is a must IMHO.

Empty Nest, Soon wrote:

MEXICOWANDERER wrote:
This is technical so please allow it...

Sleep disorder "experts" are not all alike. Some remind me of paint-by-the-numbers robots that work purely by rote and cast intelligence aside. Lower mask pressure for exhalation is critical for some people including me. The idiots that I had to deal with did not understand the capabilities of machines. My first unit was a CPAP and the results were a disaster. The second machine was a Bi-PAP. Me not they had to adjust the settings for optimum performance. One setting in particular senses the presence of breath intake. It is adjustable. I reset it to it's most sensitive setting and whammo my AHI dumped from 15 down to 1. The sleep study doctor threw a fit. I called him a quack in front of a dozen waiting patients and walked out. CSA? A person could say so. When hospitalized and drifting off to sleep came yelling "BREATHE! BREATHE! From the nurse's station. My sleep study doctor was a graduate of the university of Islamabad.

THANK YOU for the head's up on the limitations on the upscale unit.

Some of the “pros” are no better than clerks following rote procedures that someone taught them, instead of professionals applying some judgment.

I went to the brick-and-mortar medical equipment place trusting that they would know what to do. They basically handed me a machine and a mask (no bother fitting the mask to me) and sent us on our way. As we were leaving, I told my wife, “I feel like I just got the bum’s rush.” Sure enough, it was a disaster. I decided to take charge myself.

Some research on sleep apnea forums told me that the RemStar Auto was promising for my condition. I dickered with my insurance company to see how soon I could return the ResMed rental machine I got and if I could order a different machine on-line (far cheaper than the crappy machine at the brick-and-mortar dealer) and have them pay the prescribed percentage of the lower on-line cost (70% IIRC) of the better machine. After getting clearance from them, I ordered the RemStar Auto and it was great for me. After that model was discontinued, I bought one of the last ones available in-stock at any on-line dealer out of my own pocket as a backup. I liked it that well. Having the Encore Pro software is awesome. I can track all the parameters of my therapy and make adjustments as needed. My AHI has gone from 30-something per hour to, most recently, 1.9 per hour and at lower, more comfortable pressures. My 90% pressure is lower than the “pros” titrated me at. I probably added 20 years to my life.

It is great to be able to control my own therapy.

Wayne

Sounds like another canidate for the 2015 Darwin award.
MM49

I guess I ended up with some reasonbly professional folks the two times I went in for sleep tests and machines. This last on I got recently, they went over the machines and which one they and the dr. had decided on would be best for me and why. Then I spent over 1 hour in the office going through mask options, trying several, picking what we thought would work best, getting fitted, doing a mask adjustment, mask leak test, trying several masks. Before we even started talking masks they wanted to know how I slept (back, side, stomach etc) and another 20 minutes going over all the features of the machine, what I was able to adjust or change, what the effects would be etc.

End result. first night everything was "easy peasy" and worked great. No fuss, no muss, minimal adjusting.


Only thing I ended up changing was that the front of the headpiece was soft plastic. very comfortable, but in the morning the side of my face I slept on looked like I had a Nike Swoosh tatoo. Gave them a call about a week later and they replace that portion with a fabric part. Not as comfortable, but no more Nike Swoosh in the morning.

MEXICOWANDERER wrote:
This is technical so please allow it...

Sleep disorder "experts" are not all alike. Some remind me of paint-by-the-numbers robots that work purely by rote and cast intelligence aside. Lower mask pressure for exhalation is critical for some people including me. The idiots that I had to deal with did not understand the capabilities of machines. My first unit was a CPAP and the results were a disaster. The second machine was a Bi-PAP. Me not they had to adjust the settings for optimum performance. One setting in particular senses the presence of breath intake. It is adjustable. I reset it to it's most sensitive setting and whammo my AHI dumped from 15 down to 1. The sleep study doctor threw a fit. I called him a quack in front of a dozen waiting patients and walked out. CSA? A person could say so. When hospitalized and drifting off to sleep came yelling "BREATHE! BREATHE! From the nurse's station. My sleep study doctor was a graduate of the university of Islamabad.

THANK YOU for the head's up on the limitations on the upscale unit.

Some of the “pros” are no better than clerks following rote procedures that someone taught them, instead of professionals applying some judgment.

I went to the brick-and-mortar medical equipment place trusting that they would know what to do. They basically handed me a machine and a mask (no bother fitting the mask to me) and sent us on our way. As we were leaving, I told my wife, “I feel like I just got the bum’s rush.” Sure enough, it was a disaster. I decided to take charge myself.

Some research on sleep apnea forums told me that the RemStar Auto was promising for my condition. I dickered with my insurance company to see how soon I could return the ResMed rental machine I got and if I could order a different machine on-line (far cheaper than the crappy machine at the brick-and-mortar dealer) and have them pay the prescribed percentage of the lower on-line cost (70% IIRC) of the better machine. After getting clearance from them, I ordered the RemStar Auto and it was great for me. After that model was discontinued, I bought one of the last ones available in-stock at any on-line dealer out of my own pocket as a backup. I liked it that well. Having the Encore Pro software is awesome. I can track all the parameters of my therapy and make adjustments as needed. My AHI has gone from 30-something per hour to, most recently, 1.9 per hour and at lower, more comfortable pressures. My 90% pressure is lower than the “pros” titrated me at. I probably added 20 years to my life.

It is great to be able to control my own therapy.

Wayne

You apparently have a sleep therapy doctor. I had one that waddles and had webbed feet. What a farce. He was reading the sleep study data to me like I was a child. I grabbed the clipboard out of his hands and studied the graph for a couple of minutes. "What about THAT?" I challenged. "Oh that 's when you wete laying on your side" came the lame answer. "Two years you HID this from me?" Oh yeah they were busy fiddling with the controls of their machine. My sleep therapist at Peak Sleep confirmed that sleeping on my side and adjusting the Resironics the way I was forced to do had been the correct way to lower AHI and maximize benefits. Dr Quack tried to get her fired. Another trip to El Sobrante.

"What are you - an agent of Al Queda - one at a time is better than none?" Yes I actually said that to him

Motto: Do not swallow BS. If you have ANY doubt about a doctor or a mechanic GET A SECOND OPINION.

I've had resperonics and now a resmed airsense 10. Personally I' like the resmed way more than the resperonic. It's much quiter, it's smaller, I sleep better with it, and it has way more control over setup. In addition to the setup the results from the sleep test dictate, I can set the humidity level, air temp, ramp time, and a bunch of other settings that I've fine tuned to help me sleep well.


BTW it works absolutely fine with my 12V batteries, either those in the trailer or my external battery pack. The 12v-24V dc-dc converter works on the external battery pack till it is down below 10V and will easily start when the battery pack is around 11.5V. Maybe they have changed the dc-dc converter design for the converter for the airsense.

Personally, I'd recomend going with the unit that best fits YOUR sleep apnea needs, then get the setup needed to run off 12V rather than pick a unit and then try to get it to work for your sleep apnea needs.

I trust the Dr and the sleep study technologist I went to and they said they never stick with one brand, there are enough differences between them that it's more of a "what is your apnea condition" and what unit maps best to your needs for a solution.

When I got my resmed, I was told to try it for 30 days, they would monitor the results daily and if not acceptable call me in for a different unit or brand, or if I didn't like it come in and the would try another type or brand.

This is technical so please allow it...

Sleep disorder "experts" are not all alike. Some remind me of paint-by-the-numbers robots that work purely by rote and cast intelligence aside. Lower mask pressure for exhalation is critical for some people including me. The idiots that I had to deal with did not understand the capabilities of machines. My first unit was a CPAP and the results were a disaster. The second machine was a Bi-PAP. Me not they had to adjust the settings for optimum performance. One setting in particular senses the presence of breath intake. It is adjustable. I reset it to it's most sensitive setting and whammo my AHI dumped from 15 down to 1. The sleep study doctor threw a fit. I called him a quack in front of a dozen waiting patients and walked out. CSA? A person could say so. When hospitalized and drifting off to sleep came yelling "BREATHE! BREATHE! From the nurse's station. My sleep study doctor was a graduate of the university of Islamabad.

THANK YOU for the head's up on the limitations on the upscale unit.

ktmrfs wrote:


Why avoid a resmed???

I've had resperonics and now have a resmed. I have absolutely NO issues with a resmed for off grid use.
. . .

I'm glad it has worked out for you.

I recommend avoiding ResMed machines if you expect to use them in an RV based on our experience with ResMed machines.

My first CPAP about 10 years ago was a ResMed machine. I hated it for a number of reasons. I also hated the brick-and-mortar equipment dealer that set me up with it. I decided right away to take charge of my own treatment. I researched my options, purchased a Respironics RemStar Auto on-line, set it up myself after getting a clinicians’ manual, got the software so I could download data from the smart card and make adjustments as necessary. The ResMed rental went back. After 10 years and 20,000 hours that RemStar Auto is still going strong. I got a 12-VDC cord for it for $25.00 (could have made one myself for less) which I can plug into a 12-volt cigarette-lighter outlet. Nothing special needed. It has never missed a beat.

About 7 years ago, my wife was diagnosed with complex sleep apnea, a combination of obstructive sleep apnea and central sleep apnea. The machine she was issued was a ResMed VPAP Adapt SV. I think the cost was over $7,000 at the time. We paid over $100.00 for the ResMed 12-VDC cord for it. Long story short, it would not work in the TT that we had at the time. It would work very briefly, then cut out. The ONLY way to get it to reset for 12-VDC operation was to start the little Yamaha genset and plug it in to 120 VAC for a moment. When we tried it on 12-VDC again, we got the same result.

We got replacement parts a time or two on the theory that we got a bad unit, but it made no difference. I finally worked my way up the hierarchy until I got hold of an engineer with ResMed.

Turns out that in the lab, they had no battery – they used a 12-volt power supply in a controlled environment for testing the machine. Some genius engineer designed the machine so that it would kick out if voltage fell below 12.00 VDC, however briefly. (And of course, it could then be restarted only on 120 VAC.)

I went on to explain to him that in the real world in an RV in cool weather, even with a fully-charged battery, it is basically impossible to prevent the voltage briefly going below 12.00 due to lower battery temperature and voltage loss in the DC wiring run, especially when there are other things (such as a furnace blower motor starting) drawing power from the battery. I told him that by setting the 12.00 VDC cut-off, their machine was designed to fail in the real world.

Our solution was to spend a couple of hundred dollars on a pure sine inverter that was needed only for DW’s CPAP.

Respironics 12-VDC cord is still about $25.00. I recently bought a DeVilbiss Intellipap Auto as a backup and for use traveling. The optional 12-VDC cord was less than $25.00. I believe other brands are priced about the same point, except ResMed, which is much more expensive. And, based on our experience, whether it will work in the real world is a **** shoot. I’ve never heard of similar problems from another brand.

BTW, several years ago DW had another sleep study which determined that she had obstructive sleep apnea, not complex sleep apnea. They re-programmed her ResMed VPAP Adapt SV to be a straight CPAP. After a period of unsatisfactory use, I had her try my Respironics RemStar Auto. I fine=tuned it based on data from the smart card. Much better. I printed out reports from the smart card and her sleep doctor agrees. She is still using it and I’m using the second RemStar Auto that I originally bought as a backup. That machine has almost 15,000 hours on the clock. I expect the DeVilbiss to be just as good.

I would never buy another ResMed machine, nor recommend one.

Wayne

When traveling (non RV) I often leave the humidifier behind to save weight. It is my old Respironics CPAP and the humidifier had stopped working.

While on safari in Africa, even that weight was prohibitive, there was no reliable power in the bush, and I used a Z-Quiet mouth piece with an ear-loop surgical mask to help keep my mouth from drying out. It worked reasonably well.