Replies to This Discussion

Permalink Reply by Mike on March 6, 2009 at 12:22am

Darilyn, that's why it's so important to have a machine that gives you data on your breathing patterns while you sleep (i.e., a data capable machine). if you have that kind of machine, it will give you data on whether you're still having many apnea and hypopnea events. if you still are, chances are you need your pressure higher.

Darillyn Patterson said:

I've only had my machine for a couple of weeks. My pressure is quite low. The therapist told me the lowest setting is 4; my setting is 5. How would I know if it should be higher?

Mike said:

it's absolutely considered unethical to do so, perhaps even illegal. so i'm not saying people should do that. but they certain should be able to, if they know what they're doing and it's something as simple as this. also, even if they have to make an appointment with their doctor or equipment provider to do it for them, it'd still be a heck of a lot cheaper and easier to do that than go through a whole new overnight sleep study.

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Permalink Reply by Tim Sutton on March 6, 2009 at 3:57am

I think most of you guys are in the USA so my comments may not necessarily be relevant. When I was recommended for CPAP I was sent by a specialist to the local Hospital where a senior nurse had been trained in CPAP therapy. Once the specialist had told the nurse I needed a machine, it was then the job of the nurse to instruct me on the use and care of the machine. Also I could then go back to him at any time I wanted where the nurse could download the information collected by the CPAP so he could asses how effective the machine was in alleviating my symptoms. During these consultations I could talk through how I was feeling and any problems I might be having. We changed masks, pressures and other settings to try and get the best out of the equipment provided. It’s not perfect yet, but I have the capability to either go back to the clinic or do my own adjustments. Lets face it, if the darn thing is blowing off your face in the night, I would say the pressure is too high. If you are still snoring it is likely that the pressure may be too low. To go back for another test is madness. Surely the results recorded on your machine can be read by someone!
(Sorry, but I have just had a thought…….I have a Resmed Auto Set 11 which contains a memory card that I can take to the clinic where the nurse can quickly load it onto his PC and read the results of my sleep patterns recorded on the machine. Maybe you guys don’t use this type of machine in the US. From those results he can see how many times I get an air leak, how many incidents I have, how long I wear it etc.)
To get back to the ethics………………is it ethical for a doctor to suggest an unnecessary and expensive test where a professional alternative is available? I think one of the problems with private medical industry, is that some ‘experts’ are just in it for the bucks.
This, of course, is only my humble (non-professional) opinion.

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Permalink Reply by sleepycarol on March 6, 2009 at 8:22am

Some machines are data capable here in the States. But on a side note, we deal with DME's that are profit driven, so bottom line is that many DME's give patients the lowest costs machines to help increase their profits. These lower end machines do not record data -- except for compliance data. Granted there are some DME's that do care and do provide excellent service and great machines that do record data -- but it seems they are in the minority here in the States.

Although our DME's should have qualified staff to help us with our treatment -- often this isn't the case and these "professionals" can be rude, arrogant, ignorant, and completely clueless about cpap (of course there ARE good ones at there that go above and beyond to help their patients, but many of us do NOT). Oh, they know how to set the pressure on them but, often, they do not know about all the features that the machines have.

My first DME said that the M series Plus machine was fully data capable and was the prescribed machine for me. My script was for a "smart cpap with heated humidifier; pressure 8 to 12." The "professional" RT gave me the Plus machine, raved about how it was the "latest and greatest" and set my pressure to 10. When I questioned why the order stated a pressure of 8 to 12, she poohed poohed me and said that they (meaning the doctors) always did that and they (RTs) picked the mid number and sat the machines to that number. Since I was green behind the ears, I took what she said as gospel and went home with this "Plus" machine set at a pressure of 10. I AM glad that I didn't realize almost everyone struggles in the in the beginning with their treatment. After a week of feeling like it (treatment) wasn't working I took the machine in and asked for the pressure to be reset to 12, after all the script said a pressure of 8 to 12 so I didn't see a problem with that. Boy, you would have thought I had asked them to do some horrible deed that was beyond human capabilities. The horrified look on their face is probably priceless (but not funny). I was told they couldn't do that without another doctor's orders. I HADN"T asked them to increase it above what was already on the script so I didn't see the big deal. Well to cut this long story short -- I was being taken for a ride. They didn't have a clue about the proper set up I was too have. I fired them at the end of the second week and went to another DME where I did get the proper machine set at the scripted pressure.

It can take weeks to get into a sleep doctor (at least here where there is only one sleep doctor for approximately a 75 mile radius). Then there is the cost associated with the visit. If you are able and have access to the doctor -- then by all means use them. But if you don't or have high costs -- then you should be able to monitor and tweak your own therapy as needed.

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Permalink Reply by Gerald Allen on March 6, 2009 at 2:36pm

I've been two time and added OGY(2). Not felling it yet. I'll give it time. G

Claudia said:

It is them. I have been in treatment for sleep apena for over two years and still don't have my pressure right. They won't let us do it ourselves--a "professional" has to do it. It's crazy! And, although I've been in treatment, I'm still exhausted an cannot work.

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Permalink Reply by Gerald Allen on March 6, 2009 at 2:41pm

Mike. they got my $3000.00. and a $35.00 bill every month for OGY. But I'm going to bet it. And stopped watching NPR.G

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Permalink Reply by Mike on March 6, 2009 at 8:37pm

Tim, sounds as if there are some advantages to the UK system, although we have also witnessed some of the downsides of the UK system. One member of this forum is from Wales, was diagnosed months ago with severe sleep apnea, and is still waiting for his CPAP machine to be delivered. I think he said it was coming in April.

Tim Sutton said:

I think most of you guys are in the USA so my comments may not necessarily be relevant. When I was recommended for CPAP I was sent by a specialist to the local Hospital where a senior nurse had been trained in CPAP therapy. Once the specialist had told the nurse I needed a machine, it was then the job of the nurse to instruct me on the use and care of the machine. Also I could then go back to him at any time I wanted where the nurse could download the information collected by the CPAP so he could asses how effective the machine was in alleviating my symptoms. During these consultations I could talk through how I was feeling and any problems I might be having. We changed masks, pressures and other settings to try and get the best out of the equipment provided. It’s not perfect yet, but I have the capability to either go back to the clinic or do my own adjustments. Lets face it, if the darn thing is blowing off your face in the night, I would say the pressure is too high. If you are still snoring it is likely that the pressure may be too low. To go back for another test is madness. Surely the results recorded on your machine can be read by someone!
(Sorry, but I have just had a thought…….I have a Resmed Auto Set 11 which contains a memory card that I can take to the clinic where the nurse can quickly load it onto his PC and read the results of my sleep patterns recorded on the machine. Maybe you guys don’t use this type of machine in the US. From those results he can see how many times I get an air leak, how many incidents I have, how long I wear it etc.)
To get back to the ethics………………is it ethical for a doctor to suggest an unnecessary and expensive test where a professional alternative is available? I think one of the problems with private medical industry, is that some ‘experts’ are just in it for the bucks.
This, of course, is only my humble (non-professional) opinion.

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Permalink Reply by Mike on March 6, 2009 at 8:44pm

Sleepy Carol, what infuriates me beyond anything else is the arrogance heaped onto incompetence. I think you can have one or the other, and still squeak by in my book, but having that double whammy is unacceptable. I'm referring to the look they gave you when you asked to have your pressure raised to 12. Unbelievable. Reminds me of the time I asked to have an auto-adjusting machine because I told them a friend of mine had thought I might benefit from it. The provider immediately copped an attitude: "Is your friend a doctor?" I kept pushing and ultimately prevailed. But it's frustrating to have to fight for a proper level of care.

sleepycarol said:

Some machines are data capable here in the States. But on a side note, we deal with DME's that are profit driven, so bottom line is that many DME's give patients the lowest costs machines to help increase their profits. These lower end machines do not record data -- except for compliance data. Granted there are some DME's that do care and do provide excellent service and great machines that do record data -- but it seems they are in the minority here in the States.

Although our DME's should have qualified staff to help us with our treatment -- often this isn't the case and these "professionals" can be rude, arrogant, ignorant, and completely clueless about cpap (of course there ARE good ones at there that go above and beyond to help their patients, but many of us do NOT). Oh, they know how to set the pressure on them but, often, they do not know about all the features that the machines have.

My first DME said that the M series Plus machine was fully data capable and was the prescribed machine for me. My script was for a "smart cpap with heated humidifier; pressure 8 to 12." The "professional" RT gave me the Plus machine, raved about how it was the "latest and greatest" and set my pressure to 10. When I questioned why the order stated a pressure of 8 to 12, she poohed poohed me and said that they (meaning the doctors) always did that and they (RTs) picked the mid number and sat the machines to that number. Since I was green behind the ears, I took what she said as gospel and went home with this "Plus" machine set at a pressure of 10. I AM glad that I didn't realize almost everyone struggles in the in the beginning with their treatment. After a week of feeling like it (treatment) wasn't working I took the machine in and asked for the pressure to be reset to 12, after all the script said a pressure of 8 to 12 so I didn't see a problem with that. Boy, you would have thought I had asked them to do some horrible deed that was beyond human capabilities. The horrified look on their face is probably priceless (but not funny). I was told they couldn't do that without another doctor's orders. I HADN"T asked them to increase it above what was already on the script so I didn't see the big deal. Well to cut this long story short -- I was being taken for a ride. They didn't have a clue about the proper set up I was too have. I fired them at the end of the second week and went to another DME where I did get the proper machine set at the scripted pressure.

It can take weeks to get into a sleep doctor (at least here where there is only one sleep doctor for approximately a 75 mile radius). Then there is the cost associated with the visit. If you are able and have access to the doctor -- then by all means use them. But if you don't or have high costs -- then you should be able to monitor and tweak your own therapy as needed.

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Permalink Reply by sleepycarol on March 6, 2009 at 10:27pm

What makes it bad is that my case is not that unusual if you do a lot of reading on the forum sites.

It is always nice to hear about the good DME's but boy when you have a bad one -- it isn't much fun.

We changed insurance companies the first of the year (of course like everything in the world of medical insurance) and our coverage isn't nearly as good -- and I have no choice now of which DME I can use. I think that we should have the right to use whichever DME gives the best service and insurance should have to cover it. If I go out of network - I might as well not use the coverage as it pays practically nothing. I did sign up for a cafeteria plan and figure I will buy out of pocket and turn it in to that -- at least I won't have to pay taxes on the money used for those purchases.

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Permalink Reply by Banyon on March 7, 2009 at 7:55am

Mike said:

I like it. Here are my edits: Sleep doctors and other sleep medical professionALS need to come out of the dark ages FOR THEIR OWN SAKE AND THE SAKE OF THEIR PATIENTS. Look at what the diabetes medical profession has been doing HOW MEDICAL PROFESSIONALS TREAT DIABETES. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise. CPAP is much simpler AND LESS INVASIVE than that, BUT JUST AS IMPORTANT TO GOOD HEALTH. BUT YOU "HIDE THE BALL" FROM PATIENTS BY NOT LETTING THEM MODIFY THEIR CPAP SETTINGS. But sleep apnea is a very damaging condition and it is very important to have an optimal therapy. FURTHERMORE, YOU JEOPARDIZE YOUR ENTIRE FIELD OF SLEEP MEDICINE BY LETTING YOUR PATIENT BASE BECOME FRUSTRATED AND HOSTILE TO YOUR "GOLD STANDARD" OF CPAP THERAPY. So come out of the dark ages and model your practice after what your associates in diabetes treatment have done. This will come. Don't let your practice be left behind. Empower your patients to take control of their own therapy and improve their lives.DO WELL BY DOING RIGHT. EMPOWER YOUR PATIENTS TO TAKE CONTROL OF THEIR OWN THERAPY AND IMPROVE THEIR LIVES.

Banyon said:

Help me compose a snappy retort to medical professionals who say patients should not change their CPAP settings. Something like,
"Sleep doctors and other sleep medical professions need to come out of the dark ages. Look at what the diabetes medical profession has been doing for years. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise. CPAP is much simpler than that. But sleep apnea is a very damaging condition and it is very important to have an optimal therapy. So come out of the dark ages and model your practice after what your associates in diabetes treatment have done. This will come. Don't let your practice be left behind. Empower your patients to take control of their own therapy and improve their lives."
Now if I can just say that to them without clenching my teeth. :)

OK guys, it is time for us to stop whining and use the energy to practice and deliver our anthem (above). :)

Instead of bad stories, how about some good stories over the coming weeks about delivering the message effectively?

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