I must be approachable, because I get PM'd with questions like these (to follow) all the time. So, while I know we have the collective wisdom and FAQ and all that, they don't address some of the questions herein that I get asked a lot (weekly, it seems). I thought I would start a dialogue for Newbies here and I hope other Veteran CPAP'rs will join in and help me answer them.
Dear New CPAP'r,
Dear Jen,
I wonder if you could take the time to answer a couple of questions I have.
I want the M series A-flex (auto) if I can get the data card.
From reading posts, I understand it is difficult. I see that you have it.
Can you share how you did that? I use private mail because I think folks are sensitive about this.
And, I am a mouth breather. If I had a chin strap, would your type mask be good to start?
I am willing to try. This mask thing seems to be complex.
Thanks for your time.
New CPAP'r (I withheld name)
Good for you! You are on the right track. You want to have a good machine and be able to monitor your own treatment. Don't give up if you have trouble, because it is worth it--every diabetic can look at their numbers in the morning, so why shouldn't you?
I think every person on this forum is either in your boat or has been.
I don't know much about your situation, but this is what I did. When I went for my first DME visit, I had printouts of all the machines and comparison charts from cpap.com. The RT at the DME thus knew that I was informed, and that I KNEW how much these things cost online. It was a very subtle threat, but it gave me leverage. If you have insurance and you want the ease of using your local DME instead of getting reimbursement yourself from your insurance, I would recommend using this tactic. I had about 1/2 a ream of paper, stacked, with circles and arrows and scribbles and I rifled through it the whole time I was there!
BTW: Should you desire to avoid this dance, I recommend making your purchase from our host, https://www.cpap.com. They are a reliable company, their prices are excellent and we owe them a lot for giving us this forum. I have ordered supplies from them several times and been ecstatic with the service I got.
Back to the DME. So, first they tried to give me the basic machine without the card. I put my foot down that I needed a machine with data capability. I didn't insist on an auto because I wasn't certain at the time that that was what I needed, but I did insist on a machine with a card. They promised to order me one and I got it within 2 weeks.
Since most insurance co's pay RENTAL for the first 3-6 months, at an exhorbitant cost, and THEN buy the machine, they are ultimately paying usually 2-3 times the cost of the machine online. The DME's don't want you to "fire" them and buy online if you aren't happy, so they should get you what you want. If they don't you can always verbalize the threat if they are too dense to get the subtle hint. And you CAN fire them and use another DME or buy online--it might be more footwork and phone time with your insurance, but it CAN be done. I have read about folks here doing just that.
Now the software is a separate issue. The DME is VERY UNLIKELY to provide that, although there is the rare occasion you hear of it happening. Your best bet is to buy the BRAND NEW (edited October 5, 2007 to include new software info.) end user software offered by Respironics and available at cpap.com, our host. You will also need the mako card reader, which I believe someone has posted a link to below. It is the same one offered by Respironics at a higher cost. You can get it at TwoFactors and throw away the driver that comes with it--the Respironics software should provide the correct driver needed to use the card reader effectively.
Unless your DME is doing regular downloads and looking at your numbers--(most don't, but mine actually does, though not very frequently,) there is no way of knowing if your pressure needs have changed due to weight gain or loss, age or surgery or something like that.
Now, I'm NOT advocating making changes to your pressure without consulting your doctor first. I think if you have a good doctor who is interested in your treatment, that is who you should be consulting with regarding any change in pressure. But it is important to know if what the machine is doing while you are sleeping is EFFECTIVE or not. That way, say, if you discover you have a good AHI (under 5) but are still tired, perhaps you need to find out if you need to work on sleep hygiene or maybe have some bloodwork done, or maybe a complete physical and workup. Or maybe you are set at the wrong pressure!
Too many people are using the machines without data, still feeling like crap, giving up, and chucking the machine in the closet to gather dust and THEN developing high blood pressure, heart problems, diabetes, strokes, depression and a myriad of other health complications related to hypoxia (low blood oxygen) and poor sleep.
Diabetics and other patients of other ailments monitor their progress daily. This is also necessary for an informed cpap user. I heard recently of someone on cpap for 20 months. They still felt like crap but they did not have a data-compatible machine. Finally after another psg (polysomnogram--sleep study) they discovered that their pressure needs were actually much higher--nearly twice the pressure originally prescribed.
This would never have happened if this individual had been given the opportunity to track his or her own treatment. This is what we are fighting for. It is a righteous fight. It will be easier if you make sure your doctor is informed about what is available and what you are willing to do. If they write the prescription for the data-recording machine, your fight will be easier (usually). And if he or she is made aware of the controversy existing around this topic and that people fall thru the cracks (like my poor friend I told you about above) they will be able to not only help YOU, but others in your community as well, to get proper therapy for this disorder.
This treatment isn't the easiest. And it isn't transparent. It is complicated. The more infomation we have, the more we are empowered to take charge of our own health and live longer and better for doing it.
Another important issue: Giving up. Don't. This takes time to get used to. I see lots of newbie posts about feeling like giving up. Your initial reaction to cpap treatment might be disgust, but time and the proper equiptment will make such a difference not only the way you feel, but your overall health, that you must be stubborn with yourself and keep at it. Do NOT GIVE UP. You are worth the trouble and expense it may take to find the proper mask or complete set up. Within a month or two I was sleeping better than I had MY WHOLE LIFE. My mood improved. My high blood pressure returned to normal. I had more energy (and still do) than I can remember in a long time. You don't have to live life in a fog. What other ailment can you have that the treatment for is AIR?
Onto the mask issue:
If you are a mouth breather, life is more complicated than if you aren't. I would first try full face masks--there are quite a few good ones on the market. Talk with your insurance and dme to find out what the replacement schedule is and how many you are allowed at first. A good DME will let you spend quite a long time trying them on with your machine on in the office and really good ones will let you lie down, because when gravity acts on a horizontal face, the mask will fit VERY differently.
I am one of the unlucky ones whose anatomy just doesn't go well with any of the ff masks. I use: swift II (I have tried about 14 different masks and it is my fave--but your mileage will vary!) and a Topaz Tiara chinstrap and a 4" piece of rayon/cotton fabric tape made by 3-M over my lips in an attempt to seal them.
I use Rooster's fabulous taping technique: I put on lip balm, then turn my lips in toward my teeth. Put on the tape smoothly (if you are a lady you are trying to prevent wrinkles!) and then don the rest of my gear. Some nights the tape gets wet from drool and some nights I still manage to leak thru my mouth and that wakes me up, but most of the time I go to sleep at night and don't wake up til morning's light and wake very refreshed with this set up.
If there were an alternative to taping, I would try it. But I don't have any other choice at this point in time. Some have experimented with homemade boil and bite guards to "seal" the mouth. I haven't been able to get that to work. Hopefully the manufacturers will address this soon.
Masks are complex. One observation that I have made about mask noise is this: if the part where the exhalation ports (holes for your CO2 to come out of the circuit) is lies in soft rubbery material, the mask will be noisier than if the exhalation ports are in hard plastic. This only matters to you if you think the noise will bother you. Every mask is different. And some people like the white noise their mask makes because it blocks out other unwanted sound that could wake them. So, it just depends on your personal preferences.
I hope I answered most of your questions satisfactorily.
Please visit us here often. The more the merrier. This is a great community with all kinds of people--many of whome have a lot of great ideas and valuable experiences. I count many among them as friends, though I have never met them.
Jen
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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, cpap.com, swift, newbie, CPAP, DME, AHI, seal, auto
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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, cpap.com, swift, CPAP, DME, AHI, seal, auto
