Giving away cpap machine

[Davejk]

After a sleep study I was prescribed a machine, which insurance covered. After trying it for about a week, I gave up. I've had only rare apnea episodes and rare instances of snoring to the point that my wife nudges me over. If I manage to stay on my side, I don't seem to have any problems at all. Since I was having real trouble falling asleep with the machine on, I quit.
Anyway, the machine's just been sitting in my closet for about a month. Meanwhile, an acquaintance tells me she has severe apnea problems -- has to sleep sitting up and gets little good sleep. She has no insurance and can't afford a sleep study or machine. She tells me her primary care doc tells her she should use a machine. I want to give her mine but am concerned about side effects harming her if it's not set properly or if it's not really indicated for her. I'm also concerned about legal issues since I've heard these things have to be prescribed. On the other hand, she seems desperate and maybe this thing could really help her instead of gathering dust in my closet.
Any advice?

[snnnark]

Hi Dave. Firstly you're not going to find much support here for you giving up your machine! If you were prescribed a machine that means you had to have more than 5 apneas per hour, or your sleep is disrupted enough to warrrant treatment.
Do you have the results of your test available?

It may be that your disorder is positional e.g. on your back you have more apneas than on your side. If that is the case then you may get away with learning to side sleep. If your case is mild then a MAD (mandibular advancement device) may work. But OSA tends to get worse with age so although you may be marginal now, in the future you may need your machine. If you tell us what kind of issues you were having, maybe we can help.

Secondly, unless your acquaintance has any heart or lung issues, CPAP is unlikely to do any harm. People have self diagnosed and treated successfully. However it is essential that the machine used is data capable and the reporting software is available. Does your acquaintance have internet access? If so, direct her here and we can try to help. There are several places to get good used equipment at reasonable prices.

What kind of machine and mask do you have?

[Pad A Cheek]

Good morning Dave,
The advice I would give you is two fold. First and foremost, you need your machine or you would not have been prescribed it. You are in denial that if you sleep this way or that, that you do not have sleep apnea. One week is not enough to get used to the machine in most instances. Also, the insurance company may be renting the machine for the time being, and if you do not use it, they will stop paying for it and the DME will want it back. They require that you show that you are using it in order for the insurance to pay for it. If you value your health and want to be around to enjoy your life and future health, you will get used to using your CPAP machine and use it every time you sleep. Sleep Apnea is serious, even if it is mild now, it will get worse as you get older. Your health will be affected and you will wish that you had toughed it out. This is not just an annoyance, it is a true health risk.

The second part is for your friend. There are places that provide CPAPs to people who cannot afford them for reduced or little cost to them. If she knows for sure that she has SEVERE sleep apnea, she should be on CPAP. The pressure is titrated for each individual at the sleep test, so unless you have a self adjusting APAP, you would not really know at what pressure to set the machine. You can do damage with too much pressure, it can cause central apneas. You are being a good friend to want to help her, however she needs to seek help for her sleep apnea. The Social Services helps people in here sitution here in our area. Furthermore, the DMEs sometimes will help get the machines and masks that people need who cannot afford them. Her doctor can also help her get in touch with the correct people to help her.

These would be my suggestions, I am not a doctor, just a hose head that knows how CPAP has made my life WONDERFUL.
Take care and please consider using your CPAP again,
Karen

[Davejk]

Thanks for your responses.

My machine is a ResMed Escape, with a H5i Humidifier and a Mirage Quattro full face mask.

I've had a few episodes where I've woken up panicked, gasping for breath -- having to force a breath, sort of choke it out from the back of my nose to get going again. These have happened at widely spaced intervals, over years. I've had more frequent episodes of snoring or snorting that wakes up my wife. She nudges me, I roll to my side, and that's it. If I stay on my side, I seem to be fine. I was never given results of my sleep test except to be told I qualified for a machine.

The first part of the test, I barely slept at all, but apparently it was enough to find I qualified. I had to go back a second time for the titration and did manage to sleep with the mask a bit. The nose feed was more comfortable, but woke me with a start when I opened my mouth.

When I got the machine home, I couldn't sleep at all with it. I tried about five nights. I was really hoping for some help because, despite little noticeable apnea, I never do sleep through the night and would be happy to do so. I'm asleep when my head hits the pillow at midnight but wake up in two or three hours and cannot get back to sleep. So I get up and read, watch tv, surf net for a couple of hours, go back to bed and get another couple of hours sleep in the morning. If the machine could get me through the night, I'd use it. But I can't even get to sleep at all to start with it...It's just too disruptive.

Anyway, if the machine could help someone else it would make sense to pass it on. If our health care system weren't so screwed up, she would just get the help she needs and I'd send the machine back since I'm not using it and get another one should my issue get worse. Under the circumstances, it seems right to help each other out as much as we can.

Are there any of these places that help people with CPAP machines in Arizona?

Sounds like my machine might set the pressure automatically, which apparently would be safer for her...

[Pugsy]

The ResMed Escape is not data capable. Only thing it might ever show anyone would be hours of use "compliance data". I doubt that it is the APAP Escape which might adjust pressures. It is probably a straight CPAP.
Even if it was an auto unit that would vary pressures, it has zero capabilities to help anyone trying to determine which pressure might be working or not. All machines that ResMed makes with "Escape" in the name have no way to get useful data.

It is beyond the machine's capability.

It is a good machine as far as therapy is given but there simply is no way to determine if the pressure it is giving is the correct pressure should there ever be problems.

It would make someone a good back up machine that already has a data capable machine.

Edit
It would be hard to self titrate and self treat but as Rested Gal has mentioned it can be done. Lots of work and dedication needed.

[msradar65]

I know of someone who can't afford a machine and would be very grateful to have one. You may send me private message.

[Janknitz]

You are the victim of VERY POOR TREATMENT and patient education, and as a result, you are giving up on treatment you DO need, because they would not have prescribed it if you didn't.

1. You have no idea how severe your apnea is. You cite no test results, only cite symptoms of waking and feeling like you are gasping for breath. Since those episodes are not frequent, you are ASSUMING your apnea is infrequent. But not all apnea events are so long and severe that they cause you to wake up gasping for breath. You may be having MANY, MANY more events than you realize, and even if they are not as severe as the ones that wake you, they are CERTAINLY doing DAMAGE to your body. You should contact the sleep lab that did your study and ask for a full copy (not just a summary) of your results, so that you can see exactly how many times you stop breathing without treatment. This should have been discussed with you, including the dangers of untreated apnea, but it doesn't sound like it was. That's just plain LOUSY treatment (unfortunately, this happens all the time!).

2. You were given the WORST possible machine. It is the cheapest piece of junk your DME carries. Why? Because your insurance pays the same amount for any CPAP machine--worst piece of junk or best bells and whistles machine. So your DME made a HUGE profit off selling you this piece of junk that cannot help you with your therapy because it doesn't have data to tell you if you are getting proper treatment, or if you are having a problem, what's wrong and how it might be fixed. This machine will do you little or no good, and it's the worst thing possible for your friend, because without good medical follow-up, there's no way this machine can help guide what her treatment needs might be. You got ROOKED!!!

3. You’ve gotten NO support from your doctor, sleep lab, or DME to have success with CPAP. It sounds like nobody has checked in with you to see if you are doing OK with it or to help you solve any issues (like inability to sleep) that you may have.

Don’t be surprised if you do get a call from your DME, because they need to check your compliance in order to get paid by your insurance company (that is the ONLY data the stupid Escape piece of junk collects). When they find you are not being compliant, they will either offer to help (doubtful), or they will take the machine away and try to foist it on some other sucker.

So your machine will either sit in your closet or go back to the DME and your sleep apnea, which is a progressive illness if not treated, will worsen. It is not like you are going to die in your sleep, but apnea is a death of a thousand cuts—cumulative trauma. Every night you sleep without therapy, you are injuring your body. Eventually that will show up as high blood pressure, stroke, heart attack, or diabetes.

It IS difficult to learn to sleep with the CPAP, but with proper support you CAN do it—and your health depends on it.

If you can get over your denial and want help to make this work, we can help. But you will do your friend no favors by giving this machine to her, and no favors for yourself either.

Are you going to let lousy care impact your life, or are you going to DEMAND what you need to be healthy???? Nobody cares about your health as much as you do, certainly not your doctor, sleep lab, or DME.

[rested gal]

I agree with all the posters who have said you need to keep working on getting comfortable enough to sleep with your CPAP machine.

However, if you are not going to use it, then I think you'd be doing a wonderful thing for your acquaintance if you would give your machine to her. If I were her, I'd set the pressure at 10 cm H2O and see if that helped me feel better. I'm not a doctor... that's just what I'd do...in both your cases.

As far as her figuring out what pressure to use with a machine that gives no useful data - that can be done by some people. Not as easily done as with AHI and Leak data, but not impossible:

"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

[LinkC]

Thank you for your generous offer to "WILL" your machine to someone. Having discontinued treatment, that's exactly what you are doing, whether you see it that way or not.

Untreated OSA will kill you early. Not directly (usually) but via the related complications it fosters. You can brush this off as "alarmist", or you can take it as "tough love". One way you die an earlier death...the other you better your chances to collect Social Security.

We all wish you would reconsider staying with your prescribed treatment. Your call.

[JDS74]

Rested Gal

What a wonderful reference to self titrating with CPAP machines. That study condifies what many folks on this message board have been saying about careful adjustment of pressures, etc.

I'm really new at this but this study and all the helpful folks here have really encouraged me to work harder and get my AHI down from about 11 to under 1.

Thanks again

[Davejk]

Thank you all for your information and concern.

You've convinced me to look further into my situation so I've requested a copy of my sleep test results.

I still want to help my acquaintance so if I decide to try my machine again, I'd like to help her get one for herself. What would be the most inexpensive route to get one that would allow her to self-titrate relatively easily?

[Janknitz]

Dave,

That's great news. The very BEST thing you can do is educate yourself and then you will be able to help yourself AND your friend. Two people on the road to health

Check out sites like Secondwind.com, Craigslist, and even your local Freecycle for machines for your friend. Unfortunately, there are too many people like you who do put their machines in a closet or are willing to sell them cheap because they don't get the support and education they need to use them successfully. But it may help you find a good machine for your friend without a lot of expense.

[Davejk]

Ok. I know you're not docs and I should talk with my own about this, which is gonna cost me but I will. But figure you all probably know more than most docs about this. Anyway, my initial test was very short, not quite two hours of sleep: 23 hypopneas, 12 obst. apneas, 3 central apneas. Overall Apnea-Hopnea Index moderate at 21. During REM, it's severe at 60, though I was only in REM for a short time and I see only 1 apnea for that period. Interesting thing to me was that all these events seemed to have occurred while I was on my side, which was almost the whole time. I was figuring that on my side I was ok.

So that seems to be it. Does that describe a condition likely to cause damage? BTW, I'm 63, in fairly good shape except for an issue with heart arrhythmias.

Follow-up titration started at 4 cm water and stopped at 10 cm water, where A-H Index was 1.3.

Thanks for any thoughts.

[Pugsy]

Does that describe a condition likely to cause damage?

During REM, it's severe at 60, though I was only in REM for a short time

Yes, it can cause damage.
You are worse in REM, like me. Mine was 53 per hour. Short time in REM, so short that they had to extrapolate the numbers because what happens is the events come so fast and furious the body bounces out of REM. Then the cycle has to start again.
Not only can it cause damage it WILL cause damage.
Hold your breath for at least 15 seconds, every minute for 60 minutes and see how you feel. Now realize that some of those 15 sec no breaths could be 30 sec or more. It will put stress on the body and especially the heart.

[Janknitz]

Your first post said:

I've had more frequent episodes of snoring or snorting that wakes up my wife. She nudges me, I roll to my side, and that's it. If I stay on my side, I seem to be fine.

Guess your thinking was incorrect, since you now report:

Interesting thing to me was that all these events seemed to have occurred while I was on my side, which was almost the whole time. I was figuring that on my side I was ok.

You have are worried about your friend with "severe apnea" but if you had enough REM sleep on your test you'd be considered severe as well. I'm sure you can do the online research to see how injurious this is to your health. And if that was on your side, imagine how much worse on your back.

Apnea is a "death of a thousand cuts"--cumulative trauma. Every time you have an episode of apnea, you are causing harm to your body. Over time it accumulates into very dangerous problems. That machine should NOT be in your closet, or on your friend's nighttable--you need it yourself.

Take a look at some of the blog posts in my signature. You need to step up and advocate for yourself--get a machine that you can actually use to manage your care, a mask you can sleep in, and get help to learn to manage with the machine. Your life depends on it!