(06-06-2012, 02:31 PM)mjbearit Wrote: Please don't think I am going to argue about overpricing, but in truth, I believe that medical manufacturers probably do not have it as easy as we might think.I think its a fraud and a rip off to fix prices so I pay twice as much for my S9 and more for masks than US prices for the same equipments even with shipping costs added and also the service is lousy.
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Do Sleep Doctors hate APAP machines?
06-07-2012, 03:00 PM
06-07-2012, 03:31 PM
(06-07-2012, 03:00 PM)zonk Wrote:
I was googling on the new Fisher & Paykel Pilairo mask and discovered it for sale on Australian sites. While there I saw the prices of other masks, and they were just about double the price in the U.S., even though the Australian and U.S. dollars are just about at par these days.
And as for shipping costs, Fisher & Paykel are a New Zealand company. At least their equipment should be the same price as in the U.S. And I already thought U.S. prices were ridiculous. It's hard to disagree with Zonk here. What could possibly be different in Australia to justify such prices? Is there a special tax or import duty on medical equipment? Does all the sunshine make the air thinner? Or is it harder to fit Australians because the way they speak English contorts their faces?
06-07-2012, 11:24 PM
I am a doctor in sleep medicine in Colombia. Titulation by polisomnography is the gold standard for CPAP treatment, but sometimes patients cant´t sleep in sleep clinic and you can´t know the appropiate pressure. Titulation at home is an alternative for treatment. I have apnea and my CPAP titulation in polisomnography was 5 cm, but when I checked RESSCAN or sleepy head, apnea continues. I climb the presurre manually (five days), by APAP (two days) in a week. Manually, my best titulation pressure was 7 cm, in APAP was 6 cm and polisomnography pressure was 5 cm. There isn´t a significative difference for me, but each patient is another world and there are severe apneic patients and their pressure could be very high . Software monitoring is important, but this is not the only way to check the treatment. Epworth Sleepy scale is also a easy alternative to evaluate your outcomes. Ask to your doctor.
You should ask to your doctor.
06-08-2012, 09:33 AM
I was told by the Care Health people who take care of my equipment, that the Doctors do like to issue the APAP machines to patients.
After a year or longer, your pressure might not be enough for you, so the Doctor will order the machine to be switched from CPAP to APAP so they can get a better idea of what new pressure might be needed. They then order the machine to be reset at the higher pressure in the CPAP mode.
That way, the patient doesn't have to take another sleep study.
Any way that is what they told me. I find it funny that my wife and I have the same Doctor but different Health Care companies and I got an APAP and she got a CPAP machine.
06-08-2012, 12:00 PM
The question as to whether or not 'sleep doctors' dislike APAP machines over CPAP, IMHO is a matter of 'keeping the money machine working'. If you happen to luck out and find a doctor who appreciates the fact that you are collecting data you are fortunate. Mine said "Geez, you know more than I do about this... you'd make a great internist" and "I'm going to Rx data collecting APAP for all of my patients in future".
Did he resolve my sleep apnea? NO! Not by a long shot. I had to go out and buy my own S9 Auto. I had to learn about OSA and a variety of other afflictions. I had to learn how to titrate my own settings as I am sure that he was just guessing at the pressure. And when I continued to suffer from massive desats during the night (okay during the day) I wound up with a second sleep study and 3 more specialists all doing their own tests, off on a tangent.
Duh? Simple enough to me. My breathing got very shallow during REM/L4 sleep and SpO2 plummeted (and BP skyrocketed and I awoke in a cold sweat often). I asked about supplemental oxygen at night and my sleep doc added ***+O2 to my Rx. That was it. Not much discussion. So I went out and bought (BOUGHT) two oxygen concentrators (My share of the rent was $150 a month... the cost to purchase the TWO units was about $1300 total. Paid for in under a year, right? (I demand redundancy).
I titrated my supplemental O2 infusion into the airline and found that at 4L/M my SpO2 stayed at about 95% all night. Go figure. It did drop but marginally and always above 90%. Slept like a log excepting for arthritis and spinal injury pain and the side-effects of the pain meds taken so I could sleep.... a vicious circle to be sure.
I titrated my own PAP pressure and came up with a good range. I titrated my own O2 infusion rate. I bought my own machines and saved a bundle even with insurance. I learned everything I could about apnea and began supplementing my diet with Magnesium, Potassium, Taurine, CoEnzyme Q10 (UBIQUINOL FORM!) and a host of vitamins including time release vitamin C, D, B's, etc.
We discovered that I had Atrial Fibrillation, which NONE of the doctors seemed to be looking for in terms of low SpO2 at night. And now that I have been blessed by a medication that gives me Normal Sinus Rhythm (and awaiting a catheter ablation) my SpO2 at night seems to be running closer to 100% every night all night long and I am about to educate myself as to the ideal SpO2 during sleep. When I am moving about during the day I am fine. It is somewhat more complex that this, of course, but it also took some time to find a knowledgable cardiologist/electrophysiologist while my first cardiologist tried to kill me dead. What a quack.
My point is that (a) you MUST advocate for yourself through knowledge and willpower if you are looking for the quickest possible resolution; and (b) most doctors hate it when the patient is educated or has more information than they do and have utter disdain for patients asking educated questions. If you have one of these doc's you need to get referred to a more flexible one and fast.
Now, I am not saying that all doctors are quacks or money machines, but am saying that most specialists are just that... specialists. And they may know diddly about what ails you. YOU need to know. And if you spend the time and effort you will know.
In the course of my travels from MD to MD I made a point of requesting a copy of my test results. ALL OF THEM. They are YOURS and you are entitled to them. Some hospitals/clinics will try to charge you an exhorbitant amount of money to have this information but that is strictly BS and the statement "Who is your governing body and may I have their phone number" usually resolves the matter in about ten seconds.
I got good news the other day! Eating healthy, living healthy, supplementing my diet, maintaining healthy levels of hydration, Magnesium, Potassium, Etc. Etc. has helped me. My pulmonologist (one of MANY MD's) demanded that I have another CT scan one year and a half after my last one to see what was happening inside me. Just a shot in the dark as she had nothing good to suggest all along otherwise. I got a copy of that report, of course, and discovered that clean living and healthy diet (NO PREPARED FOODS AT ALL. PERIOD. ALL FRESH AND AS ORGANIC AS POSSIBLE). No salt, no caffeine, no MSG, no chocolate, no........, well - you get the picture. Thus the motto "no prepared foods" as there is hidden salt, hidden MSG, hidden chemicals and genetic engineering and Lord knows what if it comes out of a package. Even the darned frozen fresh chicken breasts we were buying were loaded with crap I am sure... definitely loaded with salt. So I am on a "Paleo - like diet" as best I can. Did the doctors suggest it? Nope. They just wanted me to go to THEIR nutritionists who made up a diet for me that was full of crap. Keep your patients in the dark and feed them crap.
BOTTOM LINE? Most doctors, it is my gut feeling, hate any and all data collected by patients and have a dislike for educated patients. We take too much time. We are not money makers. We are often too much of a challenge for what they learned 40 years ago in med school. So, in answer to your question, "Do Sleep Doctors HATE APAP machines?" - my learned opinion is that your answer is not black and white but rather grey. You can take the aforesaid mini-statement and chew on it. My story is very, very long and sordid and I really should write a white paper or book on it sometime. It would, I have little doubt, be a real eye-opener for most patients seeing doc's for apneas, aFib, internal 'inflammation', etc.
Oh, and the good news from the second CT scan that I demanded a copy of? All of my internal inflammation was gone. No cardiopulmonary effusion, no pleural effusion (nothing in the sac that houses the lungs, or in the sac housing the heart) , etc. It was absolutely normal. And THAT I attribute totally to living healthy and reducing stress on my body.
If you are not using an APAP machine that gathers data right now? I highly recommend that you take a look at the gear I am using and give it some careful consideration. In especially I believe that anyone suffering from apnea or aFib needs a recording pulse oximeter like the Contec CMS-50E or EW (blue tooth) to get a handle on what is going on at night. And deal with it! Advocate for yourself when you go to see the doctor/specialist and do not EVER EVER EVER take "no" or "we need a lot more tests" for an answer. How about, "Here's some empirical data that I have gathered.... I believe that I need to begin X, Y and Z right away and unless you have a strong objection to this, I would like to do this immediately. I have no problem with more tests and visits, but I want to handle my problem starting today unless you can tell me why I should not".... and the answer "We need to do more tests" is insufficient in my opinion.
Whether or not your sleep doc or other specialist hates APAP is moot. YOU want APAP at the very least and YOU want APAP that gathers data so you can take it every day and put it on your hard drive and print out hard copies for your binder.... and when you next see that doctor that hates APAP, you take your binder and a copy of your software and data on a DVD. If they don't look at it, dump the doctor on the spot. I did and have on more than one occasion and I am telling you, for a fact, that I would not be here today enjoying life had I not. I spent three weeks on TOTAL life support exactly three years ago this past week. And I blame the doctors for that fiasco. The lab sent my chest xrays to the docs by mail. I should have DEMANDED same and taken it to the doctors offices marked "URGENT; OPEN AND EXAMINE S-T-A-T"..... I had the worst case of bacterial pneumonia ever seen following H1N1. The last thing I recall is being wheeled into the ambulance and a bag being put over my face. I woke up three weeks later in CRITICAL CARE... after they had asked my wife if they could unplug me. So, you see, on top of apnea and aFib, I now also have only perhaps 60% of my lungs working, yet am able to get above 90% SpO2 all the time and almost 100% at night with supplemental (minor) O2 infused into the air I am breathing at 4L/M.
Nuff said. Short answer.... some do and some don't.
Educate, Advocate, Contemplate.
Herein lies personal opinion, no professional advice, which ALL are well advised to seek.
06-14-2012, 08:24 AM
Thank you, "CPAPguy". Your story speaks volumes! I definitely want a copy of your white paper.
I've also encountered the doctors who resent my knowledge of their field, or are annoyed by my self diagnosis. Although I see that as a personality issue, not an industry issue, my response is the same as yours which I would summarize as, "...I'm the customer and I'm paying you to assist me in my research about me." But I've also encountered doctors who quickly showed me why my self diagnosis was probably incorrect (all of this in matters other than CPAP). However, in matters of CPAP I'm starting to think my understanding of "what's really going on" with my breathing is better than the doctors.
For example, I've noticed that it is natural for me to hold my breath while I'm turning over to sleep on my other side. Once I'm repositioned I breathe normally, usually with a larger cleansing breath, then back to normal breathing. My machine data logs this as an abstructive apnea or a hypopnea, when all I really did was just turn over in my sleep. If I didn't know this about myself, I would have to agree with the doctor's "read" of the data, that it looks like I have unconscious obstructions to my breathing when actually, I don't. I've also noticed that when nightmares wake me up, by CPAP data will reflect how my unconscious emotions (dream encounters) affected my breathing. I have a clock next to my CPAP machine and in these moments of intermitent consciousness I will look at the clock and remember the time, when checking the data later. It's not a perfect science, but it does remind me that I shouldn't take every "event" logged on my machine, too seriously.
I applaud your attitude and determination to take responsibility for keeping yourself alive, by gathering the data, challenging authority and changing doctors when you're not making progress. You are probably "still alive" because you've taken action. Bravo! I continue to tell my family that I believe I'm still alive because I chose to learn about my breathing problems and oxygen deficiency, and to take action myself to do something about it. (As in your case, I chose to pay for all the equipment myself, choosing the best I could find. It was really worth it!)
Again, thanks - Scott
--==<< old, experienced, but still curious >>==--
06-14-2012, 05:52 PM
(06-14-2012, 08:24 AM)ScottBerglin Wrote: I have a clock next to my CPAP machine and in these moments of intermitent consciousness I will look at the clock and remember the time, when checking the data later. It's not a perfect science, but it does remind me that I shouldn't take every "event" logged on my machine, too seriously.
That's a good point. These apneas and hypopneas have to last 10 seconds to count as an event to be scored by the machine. If you have a 9-second hypopnea, it doesn't count in your AHI.
That's why it's important to look at the Flow Rate graph and see how long the events last. A single apnea that lasts 90 seconds is probably going to hurt you a lot more than three apneas that last 10 seconds, but the three apneas will raise your AHI higher than the one.
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06-14-2012, 10:04 PM
yes, Sleepster...Bingo...that is correct!
--==<< old, experienced, but still curious >>==--
06-15-2012, 11:49 AM
(06-04-2012, 07:47 AM)DCwom Wrote:(06-03-2012, 06:40 PM)ScottBerglin Wrote: ...begs the two main questions we all have, 1) CPAP vs APAP, and, 2) the medical industry's effort to "keep you on the hook".
Thank you. It's all in perspective. If my patients want to buy their stuff off [commercial website link removed per Apnea Board Rules] or an online provider to save money, I encourage them to do so. However, if they want the expertise of a degree professional at their service, then a DME can be the way to go. I don't work for free or cheap. But I'm just a phone call away. I work for a great DME, it is owned by a respiratory therapist and we do some great stuff because he has seen the patient point of view from his time in the field. But I understand some DMEs are not so great. It's like I tell my patients - A DME is like a spouse, sometimes you don't always keep the first one you find.
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Moderator Action: Link Removed
06-15-2012, 12:26 PM
(06-15-2012, 11:49 AM)RespTherapist Wrote: But I understand some DMEs are not so great. It's like I tell my patients - A DME is like a spouse, sometimes you don't always keep the first one you find.
And on the downside, the DME my HMO uses is terrible and the choice is to pay my insurance premiums and then pay for my stuff out of pocket, or use them to get my supplies but still do some shopping on the side to get what is really needed and come places like this to get real information instead of only what they want me to hear! There is just no good way! Between the Drug companies, the insurance companies, the medical companies, the suppliers, etc., we get caught in the middle more often than not. I am fortunate enough to volunteer at a not for profit hospital. I have seen some of the stuff that goes on there and it is so above and beyond the call of duty it makes me proud to work there! And then the last time I was in the hospital (my HMO) it was like a stay in a foreign prison it was so bad. There is good and bad. Unfortunately sometimes I think the bad outnumber the good!
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.
PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
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