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Old Apr 18, 2010, 9:54 am
  #61  
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Originally Posted by Jaimito Cartero
Well, I had insurance when the first study was done, but they wouldn't pay for the machine. I ended up buying a new one online, although it was pricey for me at the time.
A few years later my mediocre group insurance was gone, so I'm self insured from there. I guess I've got a bit of disdain for the US medical situation, so try to get anything done in Costa Rica or Thailand. I'm actually in Bangkok now recovering from a minor surgery I had done at Bumrungrad.
I am with you 100%. There is great technology here, and we spend so much, but we don;t see the benefit in terms of overall better health care. I have been diabetic, hypertensive, and had started gaining weight. I was suspected of having a heart attack. The cardiologist told me to watch what I put in my mouth. No one, NOT one doctor in the U.S. suggested that I have a sleep study. The first time I saw a physician in India, he sent me for a sleep study. He was not even my doctor. He was the the M.D. who was consulted by my surgeon. The surgeon told me that the M.D. had recommended not to perform the surgery, unless I have a sleep study done.

All the technology, the premiums I paid, the primary care doctors I had, the dictates of HMOs and MCO's. Not one had the sense to send me for a sleep study.@:-)

Don't get me started on the state of health care in the U.S. It's shameful. for 7 years in a row, I worked away from home. So either, I , or my family had to depend on out of area physicians. One plan, paid very little for out of area medical visits. This when the corporation did offer plans both areas, but I could only choose one.
Originally Posted by Jaimito Cartero
I think I was originally set at a 8.5 or 9, and had adjusted another used machine I had to about 10.5 as I got heavier.
This is common mis-perception and "common medical knowledge" propagated through internet. There is some corrrelation between weight and the pressure. But it's not 1. It's just like diabetes and weight. There is a correlation between diabetes and weight. Some people, think being fat causes diabetes. If you watch what you put in your mouth, you won;t "get" diabetes.
Warning: I want to warn every one that please, please do not assume that your pressure has gone up as you gained weight or that it has gone down as you lost weight. I lost 45-50 pounds since last year, about 18-20% of my body weight at my highest. But guess what! My pressure went up by 25%.
Please do not change your pressure without a sleep study. There are risks of too much pressure.

Originally Posted by Jaimito Cartero
If I don't use my humidifier (non-electric), then I am so dry, that I might as well not use the machine. I tried saline spray early on but it never seemed to do much for me.
People think an electric humidifier is better but non electric humidifier has many advantages.
Consumes less power, which is especially handy when you run it on battery power.
A heated humidifer puts more moisture in the air than the ambient air is capable of carrying. That increases the likelihood of rain out, which creates the need of a sock or a mitten for the hose, or of a heated hose, as Resmed has done for some of its S9 units. I have used my CPAP without a humidifier on two trips. One was to an island off the east coast of Malaysia. I figured that with monsoon around the corner, the air was humid enough. I did not miss my humidifier. On a trip to Moldova in November, I did not take my humidifier. I stayed in an apartment that had hot water radiator heat. The outside air was dry to begin with, the heat was making it even drier. Fortunately, I had plenty of towels. I soaked them all and stacked them on top of the radiator. I had no problem.

Originally Posted by Jaimito Cartero
I'm sure I also have a deviated septum of some sort, so that if I sleep on my right side, I don't do well. Unless I'm 100% exhausted, it's hard to sleep more than 10 minutes in coach. I have slept as much as an hour or two if I'm in a nice biz or fc seat. As I said, I've never used a cpap on a flight.
I think I too have a deviated septum. As soon as I turn on my right, I feel something shift in my nostrils and my right nostril closes. I don't enjoy the thought of having a surgery. So I will live with it.
Originally Posted by Jaimito Cartero
As for the yellow and red alarms, these are when the TSA swabs your cpap. Yellow is suspicious, red is for bomblike materials.
Oh. I thought it was some sort of a warning/alarm on your CPAP. What happens when it sets of a red alarm? Test it again? I don't know if any of my stuff has alarmed. Once a screener said he was going to take my CPAP to check it out. I said, "I can tell you it works". LOL
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Old Apr 18, 2010, 10:00 am
  #62  
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Originally Posted by Alsacienne
I second the need for an extension cord, as many European hotels have their sockets, kettle (what's that do I hear you ask?) and TV on the wall opposite the bed! And take an adapter, or better one with more than one outlet socket so you can charge your mobile phone at the same time.
I have seen that too. I was able to manage sleeping wioth my feet poiting towards the headboard. Now, if you forget your power chord, nothong can help you. I can't believe a person asking a speaker about it in an OSA support group meeting.
"My husband and I went on a cruise and forgot to take the power chord. How should we handle a situation like that?"
I thought ti myself, ask the steward, and if does not oblige, go over his head to the Captain, ask for an extension chord and then strangle yourself until you can sleep without a CPAP.

I know, my thoughts were harsh. But how do you help someone like that.
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Old Apr 18, 2010, 10:38 am
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Originally Posted by Yaatri
Yes, the rule is final. But what I meant is that the iimplimentation is in flux as the airlines have been given guidance until the "sticker" becomes a common practice.

... So 2 is unlikley to take place unless the unit is malfunctioning.
According to the rule, if the first event occurs, the airline cannot deny the passenger.
I understand your point, here's a clearer statement, from http://airconsumer.ost.dot.gov/rules...20382-2008.pdf

This rule requires U.S. carriers to permit individuals to use electronic respiratory assistive devices in the passenger cabin so long as (1)the devices have been tested and (2)labeled by their manufacturer(s) as meeting the applicable FAA requirements for medical portable electronic devices as described in FAA Advisory Circular No. 91.21-1B...

Because this final rule shifts the responsibility for testing the electronic respiratory assistive devices from the carriers to the manufacturers of such devices and requires carriers to permit passengers to use these devices aboard aircraft only if appropriately labeled, we do not see a need for carriers or any other entity to produce a central list of approved or disapproved devices. A passenger can simply look to see if the label on his/her electronic respiratory assistive device indicates that the device has been approved for air travel (i.e., no restriction on the device’s use during any phase of travel).
emphasis and enumeration mine.

Yes, there is some flux around how far to take the labeling requirement, as noted in document cited supra:

The FAA is considering whether to issue an NPRM in which the agency would propose to require manufacturers that want to market their ventilators, respirators, CPAP machines, and FAA-approved POCs for passenger use on aircraft to test those devices against FAA-prescribed performance standards and affix a label to each device stating that it meets the applicable standards prescribed in the federal aviation regulations. If the FAA decides to issue such an NPRM, the NPRM would clarify that those manufacturers that do not intend to market their devices for use on aircraft would be under no obligation to conduct any testing and would not be permitted to affix a label indicating FAA approval. The manufacturers that want to market such devices for use on aircraft but whose devices fail to meet the performance standards would also not be permitted to affix a label indicating FAA approval. Moreover, the FAA will consider whether to include other proposals in that NPRM, including specifying how a carrier would "verify" whether the aforementioned electronic respiratory assistive devices meet FAA performance standards.
That debate is about whether to mandate testing, but separate from that debate is the present rule that with a manufacturer label, which by definition means that all other conditions are satisfied, a carrier must permit the use of the CPAP.

The label is the pass-card to empowerment.
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Old Apr 18, 2010, 6:42 pm
  #64  
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Originally Posted by Yaatri
I have seen that too. I was able to manage sleeping wioth my feet poiting towards the headboard. Now, if you forget your power chord, nothong can help you. I can't believe a person asking a speaker about it in an OSA support group meeting.
"My husband and I went on a cruise and forgot to take the power chord. How should we handle a situation like that?"
I thought ti myself, ask the steward, and if does not oblige, go over his head to the Captain, ask for an extension chord and then strangle yourself until you can sleep without a CPAP.

I know, my thoughts were harsh. But how do you help someone like that.
Okay, I'll fess up. I once left my power cord at home and discovered it when I unpacked in the room. Rookie error and I was just crushed. Now I don't know what your power cords look like, but mine looks exactly like the power cord for a desktop computer. I asked the front office if they had a spare laying about as most offices I've been in it seems there is a whole box of them. After several hours of looking they didn't find a single cord. Crushed and devastated that the trip had been ruined by my stupidity I went back to the room to pack. A lightening bolt of inspiration hit me and I checked the power cord on the small digital TV in the room and lo and behold it was a perfect match. Crisis averted. Needless to say I now leave an extra power cord in the bag at all times.

I have also had to sleep with my feet pointing toward the headboard. I am not allowed to use my machine on any kind of power strip or extension cord, so I am always having to make accomodations for that.
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Old Apr 19, 2010, 2:11 am
  #65  
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Originally Posted by Pat89339
Okay, I'll fess up. I once left my power cord at home and discovered it when I unpacked in the room. Rookie error and I was just crushed. Now I don't know what your power cords look like, but mine looks exactly like the power cord for a desktop computer. I asked the front office if they had a spare laying about as most offices I've been in it seems there is a whole box of them. After several hours of looking they didn't find a single cord. Crushed and devastated that the trip had been ruined by my stupidity I went back to the room to pack. A lightening bolt of inspiration hit me and I checked the power cord on the small digital TV in the room and lo and behold it was a perfect match. Crisis averted. Needless to say I now leave an extra power cord in the bag at all times.

I have also had to sleep with my feet pointing toward the headboard. I am not allowed to use my machine on any kind of power strip or extension cord, so I am always having to make accomodations for that.
I was going to post about this. I travel about 6 months of the year, and on 2-3 occasions <head hung in shame> have forgot to bring my power cord. Luckily, as you discovered, most use the same plug as a computer.

I recall one time when in South Africa, they didn't have any kind of adapter or anything, and after flying for a LONG time I really needed sleep. They ended up taking a cord off an old computer and splicing it a plug they had.

One other time in Argentina, I went the rounds to internet cafes offering to buy old computer power cords. It was pretty funny trying to explain it to them.

I've gotten a bit wiser now, and double check the cord.
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Old Apr 19, 2010, 2:16 am
  #66  
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How did you find out you needed a cpap?

There seems to be a lot of misdiagnosis mentioned on this thread. I guess I'm lucky that I had another relative who had been diagnosed with needing a cpap, and had a decent idea what needed to get done. He had to sleep sitting up, or he couldn't function.

Since then a number of relatives including one stubborn uncle, have gotten them.

I got very concerned after starting to fall asleep during the day, after getting 7 or 8 hours of sleep. As bad as drunk driving, I think. When I was younger I could stay up all night, and just get a few hours of sleep. Now, that won't work at all! 6 hours minimum if I'm going to be driving or working where I need to think. Obviously I can post on FT with no sleep.
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Old Apr 19, 2010, 9:28 am
  #67  
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I was diagnosed with SOSA (among other pulmonary problems) when I ended up in the hospital near death. Not only was I falling asleep at my desk, I was also getting carbon dioxyde poisoning nearly every night and I lost about 2 years of memory due to that. I had my sleep study done after I was discharged from the hospital to confirm the diagnosis.

I guess it shouldn't have been that much of a surprise since my father, mother, and brother all had/have SOSA.
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Old Apr 20, 2010, 9:34 pm
  #68  
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Originally Posted by Pat89339
I was diagnosed with SOSA (among other pulmonary problems) when I ended up in the hospital near death. Not only was I falling asleep at my desk, I was also getting carbon dioxyde poisoning nearly every night and I lost about 2 years of memory due to that. I had my sleep study done after I was discharged from the hospital to confirm the diagnosis.

I guess it shouldn't have been that much of a surprise since my father, mother, and brother all had/have SOSA.
I assume SOSA is Severe Obstructive Sleep Apnoea. Severe is broad range as AHI>30 is rated severe. I fell asleep at my desk a few times, but I attributed it to other causes. I wonder if it was OSA. I was homeless during those days after Katrina. I had a job but no place to live. I slept in my car, my office, or in a bed when some acquaintance was generous enough to invote me into their house from a day to a few days. I was diagnosed with OSA after that. I had become used to living sleep deprived.
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Old Apr 20, 2010, 9:44 pm
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Originally Posted by Pat89339
I have been flying with a BiPap for a little more than a year now. Last year 7 international r/t flights on UA, mostly in C with two legs Y. UA has an AeroMedical Desk staffed with terrific agents. They require a minimum of 48 hours notice to set up electrical for the flight. They will tell you if you have an approved machine. On planes without in-seat power UA will bring power to your seat, but you must have an original manufacturer cigarette lighter adapter for your equipment. Mine cost about $30 for my $5000 machine.
While CPaps and BiPaps are prescribed for similar illnesses, equipment varies. My BiPap is more like a mini-respirator, which explains the cost. While some may not die from not using their CPaps, I can die from not using my BiPap. So I would not necessary heed the medical advice tossed around in this thread and would instead ask my treating physician how harmful it would be to you if you went without the CPap for a night while flying.
It's great that UA delivers power for CPAP/BiPap. Many airlines that allow use of the device on board say it has to be used on battery power. I don't understand that becuase power draw, of a CPAP/BiPAP is about the same as a laptop. What kind of BiPap do you use? I use ResMed VPAP Auto25.
This maybe the reason for me to switch to Star Alliance from SkyTeam. It would be a big move as I am a million miler with them.
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Old Apr 21, 2010, 1:21 am
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I use the Respironics Synchrony ST BiPap. The ST version is more sophisticated (and $$$) than the standard BiPap as it serves as a mini-respirator.

I feel very fortunate that UA was my preferred carrier at the time I was diagnosed. When I read about other airlines and their rules and restrictions I am so very happy to have the UA AeroMedical Desk to take care of me. Granted the extra steps of having to get on board early, educate the flight crew, and check to make sure the power is operating properly while the mechanics are still there is a pain, but in the end it's all worth it.
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Old Apr 22, 2010, 4:12 pm
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Continental movement?

Continental seems to be moving towards Yaatri's interpritation of the Carrier Access rules.

Formerly, the website was very clear that the manufacturer's label certifying compliance was required. Now, it shows some flexibility.

(CPAP) machines may be carried and used on board Continental and Continental Micronesia flights if it can be verified by a manufacturers’ label or otherwise that it meets applicable FAA requirements. (emphasis mine)
However, the "Ask Alex" feature still uses the old language.

CPAP machines, respirators, and ventilators approved by the FAA may be carried and used on board our aircraft at no charge. The device is required to display the manufacturer's label indicating it meets FAA requirements. For more information see this page. (emphasis mine)
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Old Apr 25, 2010, 12:04 pm
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Flying JAL for first time in almost 25yrs, this weekend on JAL 005 JFK/Narita, then connecting on to Saigon. Talked with their CS and confirmed that for Narita sector,can use on-board power for my cpap machine.

They asked for my specific brand, model number before confirming above. Excellent, considering they didn't have anything listed on their website re disability travel!
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Old Apr 26, 2010, 9:18 pm
  #73  
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Originally Posted by Pat89339
I use the Respironics Synchrony ST BiPap. The ST version is more sophisticated (and $$$) than the standard BiPap as it serves as a mini-respirator.

I feel very fortunate that UA was my preferred carrier at the time I was diagnosed. When I read about other airlines and their rules and restrictions I am so very happy to have the UA AeroMedical Desk to take care of me. Granted the extra steps of having to get on board early, educate the flight crew, and check to make sure the power is operating properly while the mechanics are still there is a pain, but in the end it's all worth it.
Some CPAPS/BiPaps raise the pressure incrementally to the level necessary to keep your airway open. If your airway opens at a pressure lower than your prescribed pressure, it stays there until it's necessary to increase it. That ensures that you don't get too much pressure, as there are disadvantages of using respiratory devices. Some also sense if you forget to breathe (central apnoea) and forces you to breath. Does your SOSA have significant CSA also? I don't think my insurance company will approve an expensive machine like yours unless I were being treated for CSA. But I might be wrong. I had seen $5000 machines but I never thought to ask for them.
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Old Apr 26, 2010, 9:21 pm
  #74  
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Originally Posted by Pat89339
Okay, I'll fess up. I once left my power cord at home and discovered it when I unpacked in the room. Rookie error and I was just crushed. Now I don't know what your power cords look like, but mine looks exactly like the power cord for a desktop computer. I asked the front office if they had a spare laying about as most offices I've been in it seems there is a whole box of them. After several hours of looking they didn't find a single cord. Crushed and devastated that the trip had been ruined by my stupidity I went back to the room to pack. A lightening bolt of inspiration hit me and I checked the power cord on the small digital TV in the room and lo and behold it was a perfect match. Crisis averted. Needless to say I now leave an extra power cord in the bag at all times.

I have also had to sleep with my feet pointing toward the headboard. I am not allowed to use my machine on any kind of power strip or extension cord, so I am always having to make accomodations for that.
Sorry, I wasn't making any judgment about people who forget to take their CPAP chord with them. This couple raised this issue 4 times over the course if 4 different meetings. It just irritated me.
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Old Apr 26, 2010, 9:36 pm
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Originally Posted by Jaimito Cartero
There seems to be a lot of misdiagnosis mentioned on this thread. I guess I'm lucky that I had another relative who had been diagnosed with needing a cpap, and had a decent idea what needed to get done. He had to sleep sitting up, or he couldn't function.

Since then a number of relatives including one stubborn uncle, have gotten them.

I got very concerned after starting to fall asleep during the day, after getting 7 or 8 hours of sleep. As bad as drunk driving, I think. When I was younger I could stay up all night, and just get a few hours of sleep. Now, that won't work at all! 6 hours minimum if I'm going to be driving or working where I need to think. Obviously I can post on FT with no sleep.
You are right about misdiagnoses. One cause is that insurance companies spend more time and energy on forcing doctors to save the former money rather than allowing them to treat patients. My internist in MS did no more than blood tests, as they were done the lab in-house. He made enough money through lab tests and did not worry about anything else.
This is how I was diagnosed.
I am the only one in my family to have been diagnosed with OSA. I was forced to undergo a sleep study on insistence of an MD who was consulted by my surgeon in India, as I was diabetic, hypertensive, had enlarged heart, was on medication to control my lipids and was obese, with a BMI of 41. That sleep study diagnosed me to be suffering from severe OSA. A couple of years earlier, had had a minor surgery in the U.S. to remove a kidney stone when my medical history circumstances were essentially the same, but I was not recommended to have a sleep study.
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