Thank you to the members of this forum

[hopeful]

When my father told me he had been diagnosed with Sleep Apnea 2 months ago, a light went off inside my head. Lo and behold, I also have been diagnosed with severe sleep apnea, and just finished my titration study last week.

I'm just on my third night with my loaner machine (not quite the right one, can't sleep because I feel like I can't breathe out -- my cpap is 14). I have a loaner mask as well, the DME didn't have the Activa I requested, but it is on order and should be here next week.

Despite these, I now see a light at the end of the tunnel for my seemingly endless fatigue.

I just wanted to say how important this forum was to me as I was going through my sleep study and titration. I work as a management consulting and software professional with the medical and supply communities. As a result, I know there are many well-meaning people (as individuals) in the medical community, but as pointed out frequently in the discussion here, these are very much a profit-driven industrys.

For other new people who join, in all health care it is critically important to be actively involved and questioning the decisions made on your behalf, to stay informed via forums like these. Every person is different. More importantly, more of these kinds of (machine / mask) recommendations are driven by profit than for your personal welfare than you may think possible. Just see them as the recommendations they are, and find for what works for you and what you need.

My DME did not carry the Activa masks, or the Goodknight series, for example, because the profit on these was lower for them, even though my insurance company would pay for any machine I wanted. So I'm actively going to push for what I want, and not just settle for the machine my sleep clinic decided was right for me. My clinic always uses one particular machine -- based upon what criteria I have no idea, the recommended machine has no advanced capabilities or flexibility, and I have a relatively high pressure requirement.

Having said all this, I'm trying to decide whether to push for an AutoPap (I have a straight CPap prescription for the moment) or just go with the Remstar Auto with C-Flex. I'm going to try both. I know there are already several topics on this question, and I'll be following them with interest.

Just -- thank you all -- from an old pro who knows the value of this information!

[LDuyer]

Hopeful,

(We should all have that username.)
I sure hope Rested Gal and Wading thru the Muck read your post here. As you probably have noticed, they are two most prolific and very knowlegable forum members. I hope they read your post, because they would be pleased that you found help here. You are a wonderful example of someone taking control of their own health needs and weighing all the options. I wish you all the luck with your treatment. Please let us know how it goes. We'd all love hearing about it.

Linda

[rested gal]

hi hopeful,

Linda's right about what a great nickname you chose and what a good introductory post you wrote!

You mentioned:

I'm trying to decide whether to push for an AutoPap (I have a straight CPap prescription for the moment) or just go with the Remstar Auto with C-Flex. I'm going to try both.

The REMstar Auto with C-Flex is a full fledged Autopap, just as much so as the PB 420E or the ResMed Spirit autopaps.

The confusion sometimes comes because there has long been a very good Respironics REMstar Autopap, but only recently the drop-on-each-exhalation feature of C-Flex has been added to that REMstar autopap. However, the REMstar straight cpap machines have been available with C-Flex for quite some time, so most DME's or doctors who hear "C-Flex" think it's a feature only on REMstar straight cpap machines. But now (thankfully!) C-Flex is also a feature in the newest REMstar Autopap.

So, the REMstar Auto with C-Flex is not settling for just something to go with instead of an autopap. It is a full autopap, and a very good one. Gives the best of both worlds, as far as I'm concerned...the range and varying pressures of an autopap, and at the same time relief from pressure every time you breathe out. Feels much more like "natural" breathing to me, even though I've never had trouble breathing out against any pressure up to, say, 14.

The REMstar auto with C-Flex is what I use now - I really like that additional comfort. I've had three autopaps now, and am about to get a fourth (a ResMed Spirit) just to see how it works compared to the others. I expect the REMstar Auto with C-Flex will remain my favorite though, because of the C-Flex.

Yeah, I've turned into an autopap junkie - lol! Not a bad hobby along with an unwanted mask collection hobby.

You brought out some excellent points about how things work in the wonderful world of medicine, hopeful. You're so right. We do have to be our own advocates if we want, first and foremost, effective treatment - but especially if we want it to be as comfortable as possible too.

I hope things will go great for you, and that your dad is getting good treatment. You'll be able to help him a lot, I'm sure, with the experiences you'll have and the fact that you are digging into this message board. The sleep apnea message boards are what I turned to immediately...quite an education! Doctors should look at them, too.

I'm not a doctor, or anything to do in the health field. So anything I say is just my opinion as an "autopap user".

[Wheeze]

I was just diagnosised with severe sleep apnea about 4-5 weeks ago. I was kind of in shell shock first , I use to work in a sleep lab and whenever we got new equipment we would use it on ourselfs to learn how to use it. I had a baseline sleep study 6-7 yrs ago that was normal. I was lucky in the since the doctor ordered me a remstar auto with c-flex right away I did not do a titration. As a respiratory therapist I would not call the remstar auto with c-flex a cpap it is a IPAP (inspiratory positive airway pressure) CPAP the "C" stands for continuous pressure. I have had a quite a problem with getting the right mask the Medical supply that me insurance uses gives very little infromation. I have been away from the sleep lab for 5 yrs and the equipment has changed a lot. I still need large amounts of stimulants to stay awake I wonder how long it will take to be able to stay awake? I became symtomatic 18 months ago.

[LDuyer]

Wheeze,

Welcome!
I'm probably the worst one to be replying to your message, for there are a lot of people here on the forum with plenty of insights and experience with the treatment. I've only been on treatment since mid-November. My treatment includes supplemented oxygen. I feel much better, and much more awake during the day. But my nitetime experience with the mask and bipap fluctuates from good to bad and back.

I hope you get some good advice from here. If you don't get many replies right away, try posting a topic or another reply again. You might give us some information about your sleep study results, etc. That info seems to help get you some great advice or insights.

I wish you success. And I hope you keep in touch with this forum and let us know how things go.

Linda

[wading thru the muck!]

Hopeful,

If a correctly read between the lines of your post, is the preferred brand of your clinic REMstar. If so, and they are willing to get you the REMstar Auto w/C-flex, be confident that you are getting a good machine. It will most likely serve you as well as any out there.

[Thanks again from hopeful]

Thanks for all your kind responses, and for clearing up my confusion regarding C-flex and autopap. It is great to hear the REMstar has both!

Today I spoke with the (very very kind and well-meaning) folks at the sleep clinic, the similarly helpful DME working under an inflexible corporate mandate, and also made an appointment with my (sleep specialist) physician for Friday. Busy day! But I've had a weekend of feeling like I'm almost there, and sleep is beckoning, so I'm motivated! (Just as a recap, I'm falling asleep fine, but the exhale pressure keeps waking me up. I also have lots of uncomfortable bloating and burping.)

At the sleep center I went to, although very professional and kind, they don't really consider themselves as "up" on the latest equipment. I think the doctor there chose my machine based general information which really doesn't apply in my case. And as I said before, I know from experience that the DME can provide a choice only of what is profitable for them, not necessarily the best for me as an individual.

So I am absolutely determined to do whatever it takes, even if I need to "fire" my primary care physician to get to another sleep specialist physician, to get my REMstar Auto w/C-flex (current machine of choice). It looks like I am on my way. I will keep you posted. In the meantime, I keep trying to provide feedback to these well-meaning individuals who are helping me, in the hopes they will remember people similar to me who come to them for help in the future, and try to be a little more pro-actively flexible and creative.

I'm trying to figure out why, if the auto-pap works so well and provides all kinds of wonderful data, anyone just starting out is set up with a straight cpap. Not that these wouldn't be available for those of us who like them, but why drive in the dark (not get results back), or "over" treat (have too high pressure), when it's not needed? I don't think we really know the impact of too much air pressure over many years, which may be very negative. On the websites the autopap only seems to be about $ 200 more. What is that over years of use? No one I talked to today could answer that...it's like they are still setting us up with a horse and buggy when the Model T is right in front of us! Perhaps I am overstating this?

In the meantime, I will keep reading and researching, and I wish all of you out there --
sweet dreams!

[hopeful]

Well, I tossed and turned last night, getting really angry. I think about how people go for weeks, being a danger to themselves and others on the road by driving without sleep, waiting for a prescription for a cpap when an autopap could be provided to them right away.

I believe in a higher power, however, and that everything always comes back to those who endanger others for mere profit!! As Meg Ryan said in "You've Got Mail", I send this issue out to the Dear Void, because it will drive me crazy otherwise.

At any rate, I barrelled in to my primary care doctor today. I told her I didn't mean anything personally, but if she didn't give me a prescription for an apap I would find another primary care / sleep doctor pair who would. She is a fabulous physician anyway, always supportive of me, and is a former professor of medicine, and I did end up with the prescription after she conferred on the phone with the sleep clinic and another supposedly outstanding pulmonary physician I am seeing tomorrow.

So, I ordered the Cadillac tonight on cpap.com -- the Remstar Auto with C-flex, with the software too so I can monitor what is going on. Saturday I expect to start really sleeping for the first time in who knows how many years! I'm very excited.

The whole thing cost about $ 1100 (with masks), about $900 without (I ordered 2 different masks, a comfortlite gel and an Activa). Insurance should reimburse about half the straight apap, about $ 400. So, total cost $ 700 as long as the machine holds out. (They said there is a 2 year manufacturer's warranty but it takes a very long time to repair, it must go through them, so I'd incur some rental cost in getting an interim machine). I understand these machines are usually pretty robust, though.

But if I rent with another DME, that will be long enough to go across two calendar years (for my particular plan), each with a $500 deductible, costing me $1000. So direct purchase means a total savings, for me, of about $300 or thereabouts.

So -- I'm returning my loaner, and saying goodbye to my DME as of month's end...

Also, a note to Wheeze on your struggle. Please do post a general note if you didn't get the help you need from the replies here. You know, as a former medical person, that sleep medication sets up a vicious cycle -- the more it keeps you awake today, the more it tires you tomorrow. Caffeine is similarly addictive. Get yourself the help you need to break the cycle.


"And to all, a good night"

- hopeful

[rested gal]

Hopeful, my gosh, you're fast! Way to go!!

Keep posting your experiences - you can be a real inspiration to everyone who is faced at the beginning with no choices or so many confusing choices. You are absolutely on the right track, imho.

Hope you get wonderful treatment and hope you'll be posting on the message board to help many others, too.

[Sleeping With The Enemy]

Hopeful,

You are very smart. I admire that! I ditched my DME, even though it meant driving 45 minutes to another town to a excellent (so far) DME.

Remember we are consumers in the health field, get what you pay for. Make them work for it!

Good luck and stay tuned to CPAPTALK.COM

Heidi, a fellow hoser

[hopeful]

Thanks for your kudos Heidi and Rested Gal (what a great name!) While I like to think of myself as all good things, smart included, in this case it's knowing my way around.

I am fortunate to know this particular area of business in the US, and it gives me an advantage, like a mechanic who's buying a car.

That is exactly why I am posting my experience. I do honestly hope it helps others.

As have both of you, and the other members of this forum!!

As you can tell I love movies, and like Heath Ledger in "A Knight's Tale," sometimes you just have to bend the rules to get a fair break. How sad that this is true here, when as patients we are the most vulnerable -- tired, confused, and just looking for some help to get some rest.

[hopeful]

Well, personally, it is everything it was cracked up to be! I had been given a rental Remstar (older straight cpap model, with ramp but no c-flex). I still felt tired, was waking up a lot in the middle of the night.

I actually got 8.3 hours solid sleep, with no waking up in the middle of the night -- first time in a long time I felt "I just can't sleep anymore!" I no longer feel as if I'm fighting to breathe out. I don't have the feeling I'm swallowing forced air and being bloated. The C-Flex adds this gentle feeling, almost as its waiting for me and I'm breathing normally. While of course it is too soon to feel really rested, it feels like that is coming... I really love it.

Next is trying to find a mask I like. The Activa is good but feels too big for my face. Now the machine part works for me, I'm going to venture into nasal masks (which felt too overwhelming at first).

I hope new users can benefit from my experience, but I'd also caution them that now, knowing what I know, I personally would not venture into an auto pap with C-flex unless I did get my doctor's ok. I'd certainly push very hard -- as documented above -- and be extremely skeptical, if I wanted one.

I never heard solid reasons why I couldn't go on Autopap with C-Flex -- all my doctors seemed to duck the issue, and in discussions with my particular DME I found the main reason he recommended the particular unit he did was that it had the least mechanical failures (e.g. most convenient and least time consuming for him, not really meeting my needs). Also the Autopap with C-flex is new, and the medical community hates new!

If you get a "no" without good medical reasons, AND straight cpap is just not working for you, I would personally would pursue it and even change doctors to get some solid answers. I would also, as a newbie, be very pro-active in pursuing the extra comfort of c-flex -- why not?

But I do believe there are some specific medical conditions where auto cpap with C-flex is not recommended. You may fall into one of those categories and if so, your doctor should be able to tell you clearly what they are and why (NOT-- "I Don't like C-flex in general" or "We don't ever support autopap here", or "It's too expensive and only for diagnosis"-- not true, price is relatively the same, or some similar general vague thing).

So to summarize, I personally would be a strong advocate, and push hard for my comfort and understanding as an individual against the corporate morass, but I would not go against doctor's orders.

Having said all that, I am SO HAPPY! On to the mask!!

(PS I had trouble reading the card for my first night last night. There is an "oximetry" report that comes with the software, but that menu didn't show up for me to obtain it from the card. So I need to call customer support -- if anyone has a clue on this, please post a reply. I'm disappointed I couldn't see the data).

[Mikesus]

Oximetry requires more hardware.


BTW, Don't call customer support for Encore. They will basically hang up on you.

[hopeful]

But Mikesus -- if that report requires more hardware, how do you get your sleep data? All I could get from the card was "compliance" data (how long I slept with the machine for each day). I want to see the info on # and type of apneas, pressure level, etc. Do you know how you get that, or do I have to give it to my doctor for him to tell me (bummer if so)?

thanks

Hopeful

[wading thru the muck!]

hopeful,

The only REMstar machines that you can get more than compliance data from are the Auto and the Pro 2. With those you get compliance, AHI, Flow limitation, Snore and leak data. To get oximetry data you need the Sleeplink modem and and oximetry monitor.

You will most likely not get any response from Respironic support, since they only support the software for medical professionals.