Poll - How active are you in your treatment?

[Fredman]

I have been using CPAP for about 4 years now and really have noticed the difference now as compared to when I started treatment. I have my own card reader and software. I read my data occasionally, and quite frankly I have some knowledge, but nowhere near those like some of our members.

I curious about our membership here? Like so many have posted here, there seems to be a demand for manufacturers, Sleep Docs and RT's to understand the need of their patients wanting to be active in their treatments. Diabetes being a good example of active treatment.

I have given respondents the ability to choose 4 responses, hopefully to capture their situation more fully.

[boston]

how about I am a newbie, my doctor, RT, and DME are dumbasses so I am left to figure this out on my own.

[hose head]

I didn't choose one. I am in the process of taking over my treatment. I believe my Doctor has knowledge that I can use, but the RT is full of horse puckie. I will soon be getting software set up. I am going to try to do this on a Mac. If I am going to be living with this thing in the bedroom everynight, I want know what is going on. I am lucky that I have insurance and also I am well enough off that money is not an issue. I started looking at beds last night. I am moving into a new house soon and want to have new bed there. My numbers are looking good. I am tweaking mask, hose and setup. I am going to have a restful New Year.

[SleepingBeauty3]

I am having a tough time with this whole situation. I am even having a hard time keeping the equipment cleaned. I have NO energy(mental &physical), just the thought of having to do this daily is mentally exhausting for me. My brain j!ust does not want to even go there. I dread the very thought of it, it all seems such a huge task for me; something in my mind just can't go there; that admission is very embarrassing!
Yet, I FEAR ruining the equipment. or getting sick from some infection I hate exposing myself like this,but I just don't know what to do with ME these days. I have had so many scary diagnoses and major surgeries, that I am literally overwhelmed by it all.

SleepingBeauty3

[sleepycarol]

Hi SleepingBeauty!!

I am glad you found this forum!! Many of us have had issues that we have had to overcome in order to get on the right path to successful treatment. Some have major health issues as well as sleep apnea they have to deal with.

Take a deep breath and tell yourself that you can do this ONE DAY AT A TIME / ONE NIGHT AT A TIME!!

Are you having problems with your treatment? Maybe some of us could help you figure it out. As long as you keep water out of your cpap itself -- I have found they are kind of like a baby -- very durable. In all likely hood you are not going to damage your equipment. For me I found that cleaning my mask was a swoosh in the water -- frame and seal. I have gotten I don't clean my equipment very often and so far it hasn't hurt me any. So if you go a day without cleaning -- you are probably okay.

Focus on the fact that you will get better both physically and mentally using your equipment. From what I am reading you are tired of feeling the way you do now. Know that your machine can become your best friend and help you find a better way of life.

Let us know if we can help.

[Slinky]

I don't know that I can really count myself a veteran as I was started on a Resmed S8 Elite w/EPR in October 06 and just switched to a Resmed VPAP Auto (bi-level) in March 08.

I pretty much considered myself well on my way to being a veterarn w/my Elite and was perfectly happy and comfortable with taking my own readings and adjusting my therapy as I thought needed, notifying my sleep doctor after the fact.

HOWEVER, there so many darn "comfort options" on this VPAP Auto .... I "have" taken it upon myself to make a few minor adjustments but I am actively learning and would prefer input from my sleep doctor and RT. UNFORTUNATELY, when it comes to the "comfort options" on the VPAP Auto they have NO MORE idea than I do AND they have a whole heck of a lot LESS interest. So far I am totally out in the cold and on my own and my sleep doctor and RT are clueless. *sigh* Neither one "gets" the finer points of the VPAP Auto's therapy capabilities - which would be okay IF they had any interest or willingness to learn and advise me. *snort* Yeah, sure. Zero interest on their part. I can understand my sleep doctor really not having the time to learn the finer capabilities of every brand and model xPAP available - BUT the RT for the local DME who provided the device??? THE RT SHOULD BE WILLING AND ABLE to read the Clinicians Manual and figure things out and advise the sleep doctor for the necessary setting changes, wouldn't you think???? No such luck. *sigh*

[Fredman]

I am having a tough time with this whole situation. I am even having a hard time keeping the equipment cleaned. I have NO energy(mental &physical), just the thought of having to do this daily is mentally exhausting for me. My brain j!ust does not want to even go there. I dread the very thought of it, it all seems such a huge task for me; something in my mind just can't go there; that admission is very embarrassing!
Yet, I FEAR ruining the equipment. or getting sick from some infection I hate exposing myself like this,but I just don't know what to do with ME these days. I have had so many scary diagnoses and major surgeries, that I am literally overwhelmed by it all.

SleepingBeauty3

SleepingBeauty know that many of us have and are where you are right now. Your response is not surprising as many of us have seem to be prescribe a tank sent home without much instruction or support. Sleepycarol is right. We are here for you and please seek assistance from your doctor, RT and the wonderful folks here. You will learn and slowly things will improve. Just one day at a time. Also, there is nothing wrong with you if you choose not to read your data or try to adjust your therapy. I would then encourage you to develop a good relationship with your DME and RT and hopefully they will be of good service to you. This isn't the case for many, hence that is why some of us have taken matters into our own hands so to speak.

Basically we have a great tool at our disposal and the medical profession acknowledges the condition of Sleep Apnea - but yet to be able to become active in our treatment is daunting! We as a community have to keep lobbying the health care system to provide us with easy to use equipment and to convince them that we can be and should be part of our treatment. That we can and should be able to tweak our therapy as needed.

If you are diabetic - the equipment, the availability, and the ability to be active in treatment of diabetes is a given. Not with Sleep Apnea. The patient relationship as a diabetic and doctor is so much more interactive and encouraged. There are Sleep Docs and RT's that are encouraging patients to be active, but it seems that the emerging philosophy is to try to lock up the "numbers" and keep the patient away from the interface. We need to lobby for our rights.

[Goofproof]

No need to "Lobby" for our "Rights", we already have the "Right" to oversee our own health, The CRAP Police, unlike "Homeland Security", need a warrant and body armor invade my sleep Cave. You have to stand up for your own best interests. Jim

[Wulfman]

No need to "Lobby" for our "Rights", we already have the "Right" to oversee our own health, The CRAP Police, unlike "Homeland Security", need a warrant and body armor invade my sleep Cave. You have to stand up for your own best interests. Jim

ABSOLUTELY!!!

I cut the ties to my sleep doctor following the second meeting after my sleep study. I had purchased a data-capable machine and the software, so I couldn't see any reason to be paying him for "nothing"......information that I could determine for myself. Besides that, he wasn't "patient-friendly". Beyond the initial purchases.....machine, mask, extra hoses, filters, etc. which my insurance provider reimbursed me for, I've purchased all of my additional equipment and spare parts out-of-pocket over the ensuing years (my annual deductible is too high to be met for buying them from a local DME).

Durned tootin' I'm "active" in my own therapy/treatment. If I wasn't (and hadn't been), I'd have been using the wrong pressure for nearly four years now.....I had a flawed sleep study. In reality, the medical profession is only looking to take your money and don't give a darn about YOU.

It's YOUR life....it's YOUR therapy.

Den

[Fredman]

No need to "Lobby" for our "Rights", we already have the "Right" to oversee our own health, The CRAP Police, unlike "Homeland Security", need a warrant and body armor invade my sleep Cave. You have to stand up for your own best interests. Jim

ABSOLUTELY!!!

I cut the ties to my sleep doctor following the second meeting after my sleep study. I had purchased a data-capable machine and the software, so I couldn't see any reason to be paying him for "nothing"......information that I could determine for myself. Besides that, he wasn't "patient-friendly". Beyond the initial purchases.....machine, mask, extra hoses, filters, etc. which my insurance provider reimbursed me for, I've purchased all of my additional equipment and spare parts out-of-pocket over the ensuing years (my annual deductible is too high to be met for buying them from a local DME).

Durned tootin' I'm "active" in my own therapy/treatment. If I wasn't (and hadn't been), I'd have been using the wrong pressure for nearly four years now.....I had a flawed sleep study. In reality, the medical profession is only looking to take your money and don't give a darn about YOU.

It's YOUR life....it's YOUR therapy.

Den

You are missing one point...for those of us that pay into an Insurance plan that I have no option to opt out of...I want my damn monies worth in services rendered. You have just played into their laps and they have priced you right out of their responsibilities. So it works this way...they make the deductible to damned high for you to even consider utilizing services...you get pissed and you pay out of pocket. They profit and continue to collect your premium.

Let's look at this way...I have no choice in my Insurance provider, it is a work benefit. I pay half my employer pays half. Is my employer going to make the provider be more accountable - nope. Is my union going to make my employer make the insurance company more accountable and responsive - nope. So I guess I could spend more money and pay totally out of pocket or....

[Wulfman]

You are missing one point...for those of us that pay into an Insurance plan that I have no option to opt out of...I want my damn monies worth in services rendered. You have just played into their laps and they have priced you right out of their responsibilities. So it works this way...they make the deductible to damned high for you to even consider utilizing services...you get pissed and you pay out of pocket. They profit and continue to collect your premium.

Let's look at this way...I have no choice in my Insurance provider, it is a work benefit. I pay half my employer pays half. Is my employer going to make the provider be more accountable - nope. Is my union going to make my employer make the insurance company more accountable and responsive - nope. So I guess I could spend more money and pay totally out of pocket or....

I don't know how it is in Canada, but I DO have a choice about whether to opt in or out of whether I want to put more of a burden on my insurance. I've done the math and it's much cheaper for me to pay out-of-pocket for the few things I'll be needing for the future. My employer is self-insured and pays a good portion of my premiums, but I do have a $750 deductible each year (per family member or $1500 total). If I take a lower deductible, it'll cost me more out of my paycheck each month and other than 2005, I've never met my deductible and in fact, haven't been to a doctor since Oct. of '05. Those masks that people get every 3 months or 6 months aren't "FREE"......and get counted against the deductible until it's met.....and at about 3 times what they cost at CPAP.COM, it makes no sense to do that. For that $750 each year, I've been able to acquire THREE additional machines, a number of hoses, filters, masks and other things that should last me the rest of my life. By using my insurance to "buy" this over-priced stuff, it's just adding to the burden of insurance expenses. THEY don't pay for it......they're not going to lose money and will just keep increasing my premiums to meet their expenditures. Since my employer is self-insured, I'm also helping to hold down their costs. People who THINK they're getting stuff from their insurance are dreaming.....they're going to pay for it in some manner......either in increased premiums or through their co-pays.

When I started out, the cost of my equipment (by purchasing it from CPAP.COM) was actually about the same (to me) as if I'd have made my insurance provider pay about three times the price with all the co-pays, etc. So, I got what I wanted and I saved my insurance provider LOTS of money.

I got "my damn monies worth in services rendered".......and didn't put an additional burden on my employer's costs.
I'm trying to do everything I can to keep down the cost of insurance and my medical care.
And, I'm not "union", either.


Den

[Goofproof]

You are missing one point...for those of us that pay into an Insurance plan that I have no option to opt out of...I want my damn monies worth in services rendered. You have just played into their laps and they have priced you right out of their responsibilities. So it works this way...they make the deductible to damned high for you to even consider utilizing services...you get pissed and you pay out of pocket. They profit and continue to collect your premium.

Let's look at this way...I have no choice in my Insurance provider, it is a work benefit. I pay half my employer pays half. Is my employer going to make the provider be more accountable - nope. Is my union going to make my employer make the insurance company more accountable and responsive - nope. So I guess I could spend more money and pay totally out of pocket or....

If you work, you pay for your INS, that's a fact. Most of us have worked and do pay! How do you get your moneys worth, by accepting inferior equiptment and doctors, that don't take your health seriously?, NO! Sure you are getting money spent out of what you paid in, but what good or damage is it really doing to your health! Be proactive in your health for yourself and others. As far as the union and employer, keep them in the loop, report bad treatment by doctors, and DMEs, report all fraud to the INS, and make sure they really do something to correct it, it's your money they are wasting. Just because you don't have to pay directly for something doesn't mean you aren't paying, we all are paying daily. Jim

[Wulfman]

Putting things into perspective......

What the insurance providers pay for CPAP equipment (and all things related to it) is just a "drop of water in an ocean" when it comes to comparing it to hospitalization and surgically-related expenses. But, I try to save them money where and when I can, because SOMEDAY.......I may be hospitalized.......and then I will have the knowledge that I had saved them SOME money in the past and won't feel quite so bad about them paying for the other medical expenses.


Den

[Fredman]

Jim, I got the best equipment from my DME I don't think Respironics and Mirage Activa mask are inferior and yes the DME suggested the tank- next time I will be ordering from CPAP.COM. I understand that my Insurance will pay for equipment from them vs. brick and mortar DME. My wife's plan and my work plan covered the whole shot of $2,250.00, I paid a deductible of $250.00. So I think I will be ahead using my insurance. my deductible is cheaper than buying a quality CPAP unit, HH and mask.

[alnhwrd]

Sleeping Beauty,

While it may seem overwhelming, the management of your therapy is something that can and will get better over time. At least that has been the case with me. Developing a routine that works has been my key. I started out taking everything apart and cleaning it and putting it back together every day, but I got tired of it and gave up after awhile. IMHO, equipment does not need to be cleaned every single day. I cleaned my humidifier tank a month ago, after not cleaning it for several months prior. I honestly don't remember the last time I cleaned my hose. I do use distilled water all the time, and wash my face every night before putting on the mask. I don't have infections or even get colds anymore, and I had the easiest time in years with allergies this past summer. Since your current regimen seems overwhelming, adopt another that is not. Get into a routine that works for you, that you can live with. If you give up CPAP because you can't stand the thought of cleaning all your equipment every single day, you really haven't helped yourself much. It is vitally important that you use your machine every night.

If your machine is set up right, you should be able to access your nightly data to see if you are getting good treatment. When you get up in the morning, press and hold the left and right buttons on the top of your machine (< & >) at the same time for a few seconds. You should see the LED display change to "Efficiency Menu", with the word "Enter" in the lower left corner. Press the button under "Enter" and you can then scroll through your nightly average pressure, leak rate, AHI, AI and HI. Ideally leakrate should be under .10, and if over .20 you are losing air somewhere. AHI should be under 5.0, with AI under 1.0. If your numbers are higher than this, you may need to make some adjustments. In any case it is worth the time to track this information, as it is the best way to figure out how your therapy is going. I hope you get to feeling better soon!