Need help with CPAP for camper

MEXICOWANDERER wrote:
. . . I'll have to toss in another blurb for a pulse oximeter. it has been been a godsend ending guesswork.

What pulse oximeter do you use? I've thought of getting one. I see some relatively inexpensive ones, but I have no idea if they are accurate and reliable.

Wayne

The whole thing boils down to getting the AHI as low as possible, and keeping it there. With controlled AFIB when the AHI climbs but mask leakage doesn't I stick the blame the machine in the drawer and go after the real culprit my body. Never met anyone who said this was going to be easy. I'll have to toss in another blurb for a pulse oximeter. it has been been a godsend ending guesswork.

Getting a sleep apnea machine is not like getting a prescription. More like getting a new roommate and the two of you have to get used to each other.

Empty Nest, Soon wrote:

Your problems and solutions may be different from mine, but I encourage everyone who needs the therapy to work on finding the solution that works for you, rather than discontinuing use of any therapy at all because of a bad experience the first time around.
Wayne

That's really the bottom line with sleep apnea or just about any other medical condition I suppose. There are so many variables in the use of cpap for sleep apnea treatment that it can be very intimidating for some folks.

Then you throw in the new way of issuing a machine where my Doctor has never even met the 'sleep therapist' that is telling me what machine I should use, then setting it up (pressures and such), providing xyz mask, etc. Never mind that the machines and related equipment are very expensive.

This whole process can be difficult for new folks who don't end up with a good doctor and dme supplier and are not able to be compliant with the therapy right out of the gates. Thus the advice that taking control of your own therapy/situation may be needed. The problem with this is that most folks are not technical people like a lot of guys on rvnet, and are just not interested or skilled enough to do much on their own. And it's really a shame because the whole process should be lined out and stabilized using the medical providers as that's what the patient is paying for in the first place.

I always encourage new cpap users to think of the process more as a marathon than a sprint. Many folks assume that it's going to be just like going to the pharmacy and filling a prescription of pills. Hopefully it will not be much more complicated than that, but in some cases it can be quite a journey to compliance.

I was stunned when the doctors told me I was "averaging 100+ events per hour"

"Per night?" I wanted to correct

"No! Per Hour!"

No matter where, how, when or why I am plugged in, I monitor the voltage going into the machine. I am now on a Samlex, connected to the Lifeline, to act as a UPS and I can care less about a night-time power failure. Thank goodness.

MEXICOWANDERER wrote:
. . . No more snoozing at 20,000 feet.

I like that comparison. I wonder how many people really appreciate its significance.

The real problem with sleep apnea is not that you wake up and don’t get good rest. The main problem is that when you stop breathing normally, your blood oxygen level goes down – you are suffocating, much like being at high altitude with no supplemental oxygen or air pressure. This is what signals the brain to wake up or, more commonly, temporarily go into a lighter level of sleep so that the body is aroused enough to start breathing again and increase the oxygen level. This cycle can happen many times an hour.

Starving the body of oxygen has many bad effects, which you can easily read about on-line in articles about sleep apnea, etc. Sleep apnea is not something to be taken lightly.

Wayne

101% Agreement Here...

Change machines, change settings, change masks, talk to your provider's sleep therapist, or change doctors, but for goodness sake do not abandon therapy. I have one miserable time with mask leakage and yeah I went the whole nine yards from Company to doctor to therapist to provider.I had to find a way to "make it work" and the solution is quirky. I even use the machine for short naps. My BP machine and recording pulse oximeter made a believer out of me. No more snoozing at 20,000 feet.

With all the inefficiencies in the conversion processes, it seems to me terribly wasteful to use an inverter to convert 12 VDC to 120 VAC for a CPAP, which will then convert it back to the 12 VDC that it runs on. It is so easy to find the correct machine what will run directly off of 12 VDC using only a cord which costs $25 or less.

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In pondering Wrace's experiences from 1988 and today . . .

Sleep apnea seems to be diagnosed a lot these days, and treatment for it is thus a booming business. I suspect that it was under-diagnosed previously. I suspect that I have had OSA since at least my teenage years. I suspect that my father had OSA and would have lived far beyond his 57 years had he been diagnosed and effectively treated.

Because sleep apnea is more frequently diagnosed these days, it has become a bigger cost item for insurance companies; therefore, the insurance companies are looking for savings. All manner of terms are included in policies to reduce costs to insurance companies, including for treatment of sleep apnea. When insurance companies negotiate contracts with providers, they are also looking to minimize their costs. So when receiving substandard service from providers, I’m not sure how much of it is the fault of the provider trying to minimize their costs or how much of it is due to the insurance companies ratcheting down the amounts they pay to providers.

My own decision was to take charge of it myself. For any of you out there who are unhappy with the service and equipment you’ve gotten, you may be able to do the same. There are many companies on-line which will sell you the CPAP/BiPAP you want, and the prescription does not need to specify the particular machine. The machine you receive will be set to pressure and other parameters in the prescription, but if the pressure needs changed, the Clinician’s manual is usually easy enough to find – some sellers don’t remove them from the package before shipping, or many can be found on the internet.

My biggest problem was that I was titrated at 13 cm, which I could not tolerate well. It was continually waking me up, which negated the benefits. Had this been my only choice, I probably would not have continued using it. I learned the availability of auto-titrating CPAPS and so I bought one of those years ago. It arrived set at the prescribed 13 cm; I re-set the pressure to a range of 10 cm minimum to 14 cm maximum.

I was able to obtain the software for reading the data from the CPAP and make necessary adjustments to minimize the number of apneas and hypopneas I was experiencing per hour. In those days, the software was not generally available and I was very lucky to get it. These days, the software for reading data many machines is readily available from on-line dealers and does not require a prescription.

Your problems and solutions may be different from mine, but I encourage everyone who needs the therapy to work on finding the solution that works for you, rather than discontinuing use of any therapy at all because of a bad experience the first time around.

Wayne

ZAMP Solar has an inverter and solar panel system specifically for CPAP machine users.

Great post senor Wrace! Thank you.

Sadly six months after I posted a formal complaint, the sleep center was closed and (3) doctors were charged with practicing medicine without a proper license.

The original posting was about using a CPAP in an RV. Trying to separate that from functional use is near impossible. I travel from sea level to over 10,000 ft altitude down here. I am having a hard time reaching Respironics. Does anyone have experience with this?