Robb W. Wrote:You aren't saying that you prescribe AutoPAP to patients with neuromuscular conditions or COPD are you?
I had thought it was detrimental to the well being of the patient to do so.
I use an S9 Elite Autoset at home. the only problem I have is that I still have to go through a series of apneas to get to my optimal pressure. I end up with on the average a 1.1 AHI every night. However, my pressure ends up around 19.3 cm H2O unless I change the settings to restrict it from going that high. I have had pressures as low as 16 some nights, it generally comes down to how congested I am and how the machine determines the flow restriction to go to the next level. I may not have any apneas whatsoever after a certain point, but it thinks due to the algorithm that more pressure is needed to make the flow waveform perfect.
Brett H. Wrote:And it is better to do titeration after titeration because 1. Certain patients are not all alike 2. Some have asthma, copd, issues and other things. 3. When needing a GD sleep study YOU ARE ALL BUSY FOR A MONTH? So in the mean time we have to do the fk all best we can to get through life while waiting 2 months for the final titeration. I crashed my 20k car because of the games you guys play and was in a head on accident. I appreciate everything this "system" has given me as far as trying to kill me off to line a pocket. Ya all need to quit being so fing cheap and get the best you can for the patient reguardless if they are dumb as a stump and wont look at the patient data anyway. So giving me a good machine wont let you beat my insurance again and again. WHO CARES? As many fat overweight people are running around you cant find enough people to help without screwing everyone over by giving them the ezbake oven version of the CPAP? And by the way those beds in the sleep centers are as hard as a rock NO WONDER I DONT WANT TO EVER GO BACK!
Robb W. Wrote:I am not responsible for the "games you guys play" and I actually am only commenting on this subject to help with your knowledge and understanding of the pros and cons.
I don't know what area of the country you are in where the treatment is so awful that you have to yell at me. I am a technologist, AND a CPAP user myself for about 12 years. I understand what you are saying that repetitive titration is very unnecessary if the study went well. However, you need to understand that it is not an exact science. No two patients are alike, you are correct in this. Asthma, COPD and other complications can and do limit the choice of treatment options.
The biggest thing you as a patient need to understand is your own options. Don't let the DMEs dictate which machine you use. Research the types of machines out there, the types of masks that you can choose from. You have rights as a patient to request specific machines. (not sure whether the insurance will cover them, but you DO have this right). It seems that you are doing the right homework, you just have to know how any comorbid conditions impact certain options of treatment. This is not being cheap, it IS looking out for the patient.
The only good machine is the one that you will actually use. They all pretty much do the same thing, most of the time the same way. But there are drawbacks to AutoPAP in regards to the way people with asthma and other COPD breath in different stages and it could in fact overtitrate these patients.
Also, and this is the big thing I want to bring to your attention. Insurance companies are the big factor in what the DMEs and Sleep Centers are able to prescribe. They dictate what will be paid for and what won't. Sometimes the hands are tied and if you need to blame anyone for the "EZBake" approach, they would be the ones.
I am sorry to hear that you were in an accident due to your sleepiness. I have been in at least one sleep related accident as well.
You may also want to see if there are any other labs in the area and take a tour of them prior to your study. You can see how the beds are and make a determination if the beds are too hard or soft for you. I am not trying to change your mind. I don't ever want to do another study again unless absolutely necessary. But don't blame the techs for your situation, we work for the labs, but we don't have alot of control over what they do. If we did some of the things that you have said above would never happen.
Meaghan M. Wrote:Robb very well put. At the end of the day the patient must perform due dilegence in the organizations "They" choose to do business with. As in any industry their are honest respectible individuals and companies that want to care for the patient, as well as individuals and companies looking only at profit margins. If an individual was looking to buy a car most would do their research on what type of car and features and price point they wish to pay and ask around to make sure the dealership is respectable prior to walking in the door. We are in a time that patient's must participate and perform due diligence in which doctors, hospitals, home medical equipment providers, diagnostic facilities and insurance companies they choose to deal with. It is unfair to paint everyone with the same brush when you have had a bad experience.
Gavino V. Wrote:With all due respect Meaghan, that's a ridiculous stance. It's unchallengeable in a perfect world of perfect consumers with perfect information, but the reality is, DOCTORS ARE SPECIALISTS, they supposedly have more information than we (to say nothing of more education in the area), and patients are generally in some form of distress when they start the process. Can each patient be expected to rigorously research all physicians? No, particularly in this day and age of insurance carriers dictating physicians (in-network vs out-of-network). The carriers also dictate coverage.
I have multiple advanced degrees (not in medicine) and the great good luck to have a next-door neighbor who went thru the entire process. He was a font of information. I used his specialist based on a stellar - and informed - recommendation. Unfortunately, this physician - who himself was great - had a lousy office staff: It took 10 months from the time I called them to schedule a sleep study to the point when I actually got my equipment, most of the delay caused by their lack of urgency on their part.
And a great as the physician himself might have been, I was shunted to an equipment middle man organization, without choice. I took the recommendation on its face. Might I have found others? Yes, but I had not basis to compare them with.
Working with that company was a flat out disaster - and not because they did not provide timely or efficient service. It was a disaster because a) they gave me old equipment (and I had no way to know that), b) they put me on ridiculously unnecessary equipment replacement plans and c) ultimately charged me 2x the amount the equipment would have cost had I purchased it myself online.
I was not aware that there were such things as auto-bipaps, or that machines were capable of capturing data on minicards (this despite the fact that I am in the software industry!).
Ultimately, after great dissatisfaction, I took charge of my own care - physician, supplier and insurer be damned. I had to pay for an auto-bipap on my own nickel, but it was worth it. Even tho the insurance company did not resist any of the sleep study, physician visits and equipment costs, thousands of dollars were wasted. WE ALL PAY FOR THAT WASTE.
It is very, very hard for me not to conclude that people like me were not taken great advantage of.
I chose a different physician, out of network, got my own equipment - only after learning what I needed to know from personal experience - and have been much happier since.
Fora like this one should be the first place an undiagnosed apnea sufferer should go. But pray tell - HOW ARE THEY SUPPOSED TO KNOW THAT?
Robb W. Wrote:Truth be told. A lot of people that I see don't even know why they are in the lab in the first place. They don't know what apnea is. All they know is that the doctor recommended them to come to the lab to evaluate their sleep. Another truth is that if you have an older physician, chances are they had about 20 min to an hour of sleep medicine exposure during their schooling. So you are a little off there in your thinking. Doctors can TRAIN to be SPECIALISTS in certain areas but not all doctors are specialists in every branch of medicine. It is not fair nor intelligent to assume that they know everything just because they went to medical school.
I have been told by patients who were physicians that techs often know more about the field they are in because that is where the focus is. I agree. I can even tell you about different treatment options aside from CPAP and BIlevel, such as Autoservoventilation (that is another PAP method that will treat complex sleep apnea (OSA and central), Deadspace non-vented mask titrations, Uvulopalatopharyngoplasty (UPPP), and even positional therapy if there is a way that an intolerant to CPAP patient may be able to qualify for if their apnea is related to how they sleep. Did you know that weight loss will not always make your apnea go away? I lost 25 pounds and my pressure went up?
Thousands of dollars are wasted every night by patients who don't show up for their sleep studies, cancel at the last minute, leave in the middle of the night(Insurance won't reimburse for a study that is less then 6 hours generally) , and the list can go on. Do you get blamed for this? Waste is a part of health care in general, you can't avoid it because of the fact that EVERY case is different. What you may also be saying in the same breath is that all critical care patients should not be taken care of because they are going to die anyway and if you figure in all the equipment costs, physician efforts and everything else in the end we are just throwing away money. But you would not do that. WHY DO YOU THINK IT IS SO EXPENSIVE IN THE FIRST PLACE?
You had a bad experience, I get that. I had a vastly different experience my first time, it was great. You can't throw every lab in the country under the category of bad just because YOU had a bad experience. I can tell you that maybe 2 out of every 20 to 30 studies I have run had anything negative to say. Some people are miserable from sleep, some are just miserable people. You have to decide whether A) CPAP is working for you and would you recommend it to others based on this sole fact, and B) Do you want others to know ahead of time what you had to discover after all the hassle?
Education is the key to empowerment. If you turned half of your negative comments I have seen into a positive campaign to educate those suffering from sleep apnea about their options for evaluation and treatment, you would see that THIS IS HOW THEY FIND OUT! Get involved in your community, put a notice up at a hospital public bulletin board. PAY IT FORWARD. It is easy to sit back and say,"they should do this they should be doing that, no one knows, they are scared, etc. etc." It only takes one more passionate person to keep passing on their knowledge and that will cascade.
I sense that this forum is for patients, I fall into both categories as both a tech and a patient. But I have and do work for some top notch labs that are feeling a squeeze due to the economy and reimbursement practices. You come to MA there are a LOT of top notch labs, sleep docs and technologists. I have had patients that have flown all the way from other countries to have sleep studies in the labs. I resent the bad picture you are painting of the whole field. WE ARE NOT ALL THE SAME.
Brett H. Wrote:Now, that being said some here are on the defensive and saying we are not all the same.
I have had the pleasure of being in 2 different sleep study labs. One was at home and it was one of the most miserable times of my life. The first time they did not even know how to connect the machine and spent hours fiddling with driving back and forth from their home office in one of the worse snow storms ever. That they came back that night showed how commited they were YET their knowledge from training was very poor. They did not know the proper connections for getting their gear up and running and did not have "backup" gear to carry with them. I started to get irritated and I fixed it for them. I have a knowledge of "network" connections from work and once they up and running things went more smoothly. The masks they had did not have any sort of comfort "seal" and were full face masks. To get it to seal on my face without leaking it had to be cinched down so hard it hurt my neck. Yet I was ignorant in the fact that I had no prior experience with the masks and only an hour after they left and trudged through the snow again, it was apparant how uncomfortable I was.
On the other sleep study lab for my last 3 sleep studies and my next, the beds are as hard as a rock and some are tempurpedic matresses. The sleep lab is as cold as hell. You could hang meat in there. Tempurpedic matresses are HEAT activated. They dont get comfortable and mold to your body when its like an ICE CUBE in the room, your essentially sleeping on a brick. I have to have a fan on my face or I will not sleep so that also adds to how cold the room is.
These places are still in charge of growing their business. Also in charge of making sure the patients are as comfortable as possible. You as a patient can only do so much studying of the sleep labs and the ones in hospitals would more then likely be worse for comfort. That is only a partial of what you need to be aware of. What equipment is being used for your study and how accurate has it been in diagnosing the patients in the past. And read about if you can find anywhere online without bias what outcome the patients have had from their titration.
I do not agree that the machines of the "lowest" quality are useful to anyone except those without the funds to pay for something more. The original sleep study and prescription was given to me from someone else. And I am not allowing myself to be shoved into this area again without a machine and software and autoadjusting capability that will tell me whats going on and the ability to be able to go through life without another sleep study unless absolutely necessary. I have already broken free of the "Durable Medical Goods" companies and I refuse to have to pay them a dime for the fact that they rip off both you and your insurance. I have had my machine 4 years and I do not care if I have to pay for the new one out of pocket.
REM sleep is needed in life to be able to wake up rested. Without it you suffer and your mind suffers. This is my last comment on the board and to you who are being defensive you have every right to. I also have the right to be upset and to point, my losses have been severe and could have ended my life. You have a headon accident with a 1 ton pickup smashing into your car and see how jovial to the system you are.
I need to be on top of my sleep and I cannot without my machine being set to optimal pressure. Now with an autoadusting machine with software capability they could set my machine by reading the software. THE END and the new BEGINNING.
Meaghan M. Wrote:Gavino with all due respect you appear very angry and to paint all clinicians with the same brush. I am sorrry that you have had such a bad experience. I am a therapist, technician and a CPAP user myself. I like many others in my field are trained, caring individuals who work with their patients to ensure they have the best outcome possible. This requires the patient and clinician to work as a team. In todays information society it is not unrealistic for patients to check to see what type of physician they are using. Is the lab accredited, have there been issues with the BBB? Friends, family and co-workers are also good resources for finding physicians and facilities that treat their patients well and with care.
Robb W. Wrote:Brett. While it pains me to hear that you had an awful experience. I can assure you that it is not the same in all cases. All labs are not created equal and neither are patients. I think that painting everything in broad strokes is detrimental and misinformed.
You can argue the room temperature. I have had patients that say they cannot sleep in a room under 80 degrees and I have had some that cannot sleep in anything above 60. The human bodies optimal temperature for sleeping is usually between 65 and 75 degrees. Too hot you won't sleep well and too cold you won't either. I usually find that around 68 degrees is where most people find the comfort zone.
You can argue the beds. I have had patients that hate the beds because they are too soft, and hate them because they sink in or love them because they can be very comfortable. I never have any gray areas. They love them or hate them.
I do hear a lot of horror stories about the knowledge that the DMEs have with fitting masks and about what they know about the products. I have been trying to find employment with one of these companies on the simple premise that I have used almost EVERY mask out there on myself. I know the machines and their capabilities. I understand what you go through with leaking masks and that they should not need to be so tight. They are not perfect and something like a beard or a moustache can cause unacceptable leak.
You have the right to have the machine you want. I know that a lot of companies will work at least to meet some of the payment if not all. The most I ever had to pay for a machine was 219 dollars out of pocket. That was due to the supply allowance for my insurance company.
As far as reporting capabilities, I believe that all machines should mandatory have at least smart cards to monitor progress. This is what separates the lower units from the higher. I was not saying that there was no difference in overall functions. I was stating that at the basic elements they are designed to force air into an airway and keep it open. It is not a perfect science.
I am just saying just because YOU had a bad experience. Is not the case for all. I for one have never had a bad sleep study and I can say that I had them long before it was ever in my mind to be a sleep technologist. I recommend people get them and I tell them the pros and cons, what to expect and what they can do to make sure that it goes well. I have been doing that for far longer than I have ever been in a lab.
So I represent the silent margin of people who don't speak out because it appears the old adage still holds true. It would take more good experiences to make up for your bad one.
I am glad that you are getting quality sleep now and that you took control of your own treatment. This shows a commitment that a lot of people do not do. You are a rarity in that you did not give up. This I commend you for.
Terry B. Wrote:Patients end up not liking autopap, once they try it at home. They have adjustment issues and we read the results and often see that the APAP is underpressuring the patient. We raise it, make it fixed, and the patient feels much better. Several studies showing increased arousals and lack of improved glucose metabolism with APAP as opposed to fixed pressure. If they made the algorithms so that the pressure would not drop, then I think they would be more useful. The drops in pressure occur in NREM, and then REM comes and the patient is worse, and the machine lets them have several events before it increases the pressure (causing more arousals). We find increased arousals in REM unless we put it on fixed pressure. So as it is now I think it has limited usefulness. A week or two of apap at home tells us the fixed pressure the patient really needs if we add 2-4 cm H20 pressure to the maximum pressure given by the APAP.