If you don't already know, I have a sleep disorder called Obstructive Sleep Apnea, or OSA for short. It means that I stop breathing in my sleep. That also means that, while I stop breathing, my oxygen levels drop, my heart races, and I wake up.
Forty five times an hour, on average.
You can probably see how this could be a bad thing.
It affects me in other ways as well, but those are the highlights.
There is a treatment for it, and one that works vecy well for me. That's a CPAP machine. It forces air through my throat, which means my throat can't collapse, so I don't stop breathing. I love that machine. It worked great!
Alas, it's been having problems lately starting about a month ago. Added to that, we've had more than our usual share of overnight power outages, and the result is that I haven't slept well in about a month.
Fahim and I finally located a local reseller of CPAP machines, but not only do they not have any in stock, they don't know prices, nor do they even know which models they can get in.
Two and a half weeks later, and they still don't know.
We can order one in from the US, and that'll likely triple the price and be a huge nightmare as far as customs is concerned. We haven't ruled it out - we're just looking at options.
We can fly to India or Dubai or something, but again, that'll dramatically increase the price. Still, not ruled out.
Meanwhile' I'm going downhill. Hallucinations are already a regular part of my life again, as are the constant headaches, fatigue, and general feeling like crap.
Why am I telling you? Why not? Gotta amuse myself somehow.
Oh the life I lead.
Oh yeah. Just be glad I don't drive. Sleep deprived drivers are more dangerous than drunks, from what I've read. Bob can likely confirm that. Posts: 8355 | Registered: Apr 2003
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quote:Fahim and I finally located a local reseller of CPAP machines, but not only do they not have any in stock, they don't know prices, nor do they even know which models they can get in.
And by what criteria are they considered a reseller of CPAP machines?
What's the expenisve part of ordering it from the US? Might it be possible for one of us to get you one and ship it to you, and have you wire us however much that ends up costing? Or would that be just as expensive as your buying it yourself?
Posts: 16059 | Registered: Aug 2000
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I can look into buying one, maybe...I promise this isn't an internet scam.
There are a few place near to me that sell them, I think. I will get you prices, if you want, providing I can find them...I am new to this area, remember, so thatis in no way a givem. Posts: 15082 | Registered: Jul 2001
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quote:Fahim and I finally located a local reseller of CPAP machines, but not only do they not have any in stock, they don't know prices, nor do they even know which models they can get in.
And by what criteria are they considered a reseller of CPAP machines?
What's the expenisve part of ordering it from the US? Might it be possible for one of us to get you one and ship it to you, and have you wire us however much that ends up costing? Or would that be just as expensive as your buying it yourself?
Because they have a contract with a manufacturer of CPAP machines. I checked on the manufacturer's site. Yeah, hardly heartwarming.
Expenses, other than the machine itself include shipping ($100+ US) and import taxes, which will likely be equal to or greater than the cost of the machine - they ding heavily for all electronics entering the country. So now, the cheapest machine I can find at $300 (and this is an excellent price - when I bought my dead machine 7 years ago, I was happy to pay $1400 CDN, or about $1000 US) will now cost at least $700 US, and likely more. Flying to India might just end up being the most cost effective approach.
We can afford it if we have to. We'd just like to find a way that's cheaper, if we can.
Oh, and to complicate matters, this is Ramadan, so Fahim is more tired, headachy, and irritated than usual, and his ability to travel and run errands and the like is severely hampered. Yeah.
Posts: 8355 | Registered: Apr 2003
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Oh hey, there are lots of places we can buy one from over the internet - accessibility isn't the problem. Accessibility and not outrageously priced - now, that's the key.
Posts: 8355 | Registered: Apr 2003
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If there's anything we can help with you can't do yourself or that would be much easier for us-- calling US manufacturers and harassing them about parts or specifications or the like, or anything like that-- please don't hesitate to ask. Posts: 21182 | Registered: Sep 2004
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Kwea, I appreciate the offer and the spirit in which it was offered.
For us to buy from an American company and to ship it is easy - there are plenty of places on the internet that are set up to do that, and I've dealt with some before. I know which are reputable. That's not the problem. It's the massive expenses getting it into this country that's the problem. Or, rather, where the hate is.
kq, thanks. You're very sweet, and of course I'll take your prayers. I'll let you know if anything comes up.
Edit because, last time I checked, players!=prayers.
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Don't bother trying to buy them on eBay, they're very much against eBay rules and policy (since the use of a CPAP machine is governed by prescription in the U.S.) and eBay likes to randomly take them down and reverse the transactions on the ones they can't. Or at least, that's what they did to me. Bastards.
quid, do you know if labelling an item as a gift will help? It does for most countries - it avoids the bulk of duty taxes. If this is the case wherever you are, I (or someone you know better, probably) can find one and send it.
In fact, I think my company (an eBay consignment company) took one in recently...if we haven't returned it yet, that may be a viable option. I think the consignee wanted roughly 300 for it, including new hoses and mask.
Posts: 4313 | Registered: Sep 2004
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Just checked the database - we have both a CPAP machine and the humidifier unit. Do you need both? Do you want either? Let me know.
Posts: 4313 | Registered: Sep 2004
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Enigmatic - uh, yeah, that's pretty much what I was talking about.
Tante - I know. I checked them out. For the price they end up selling for, I may as well get new - there's not enough of a savings. That combined with no tech to service the thing if I have a problem, and I'm really better off with new.
UPDATE: Fahim called that company, and by coincidence (translation: they probably heard days ago but were too lazy to call. Or didn't think we were serious about buying), they heard back from the manufacturer today and will have pricing and shipping (ie how long it will take) info for us later today.
Posts: 8355 | Registered: Apr 2003
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Labelling as a gift helps with most things, but this is a large enough item that it will go through the central post office, which means it will be opened, and once they see what it is, because it's electronic, they'll charge. Guaranteed. They charge even on demo items, free software, etc. Even when you can prove it.
I would never use someone else's mask, aside from me probably being allergic to it (chemical sensitivities to the oddest things, including the majority of all nasal masks) and it never fitting (I have a very small nose). Sharing someone's snot? Ew!!!!!!
Humidifier - no.
We'll likely go with the local company, assuming they come through, and that's vhat ve prefer to do. If the item is damaged during transit, we don't have to eat the cost. I'll keep yours in mind, though, erosomniac. Thanks for the info. Posts: 8355 | Registered: Apr 2003
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What if we bought one here, disassembled it, mailed it to you part by part, and you put it back together there?
Posts: 3546 | Registered: Jul 2002
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I'm assuming your old one is completely dead and impossible to repair.
did the Electronics burn out or something else?
The reason I ask is that, for next time anyway, it'd seem to be wise to have a backup CPAP around when your primary one starts to go bad.
(((quid)))
Honestly, the data on sleep deprivation in driving aren't that reliable, but I suspect that people who hallucinate are at higher risk for crashes than those who do not, whatever the cause of the hallucinations.
I do hope this situation is resolved soon. Sounds horrible. I complain about waking up at 4 am all the time. I can't imagine waking up 45 times an hour gasping for breath...
Posts: 22497 | Registered: Sep 2000
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Rotor something or other. Fahim's going to see if it can be fixed. On a whim. And I'm somewhat serious about that.
CPAPs are calibrated for the correct pressuce for each patient. My brother's apnea is about as severe as mine. but he requires 20 cm of water (and I forget the rest of the units after that) whereas I require 8, and certainly no more than that.
If my brother were to use mine, he would continue to have apneic events. If I were to use his, I wouldn't be able to exhale past the pressure (this was proven even better after general anaesthetic, when I had huge problems exhaling past my normal pressure. Huge huge huge problems.)
Even if we can get the rotor replaced, I'd still have to find a way to calibrate the pressure. In a country without qualified technicians, never mind the proper equipment..
CPAP backup a good idea? Yeah, I'll agree with you on that one.
Oh, I should mention it doesn't feel like I wake up 45 times an hour gasping for air. It feels like I never fell asleep. Or I slept like crap. Really bad insomnia, even. Only once, maybe twice, in the decades I've had this, have I ever noticed myself gasping for air.
Posts: 8355 | Registered: Apr 2003
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So quid, how common is bribery there? Is it possible that things are taking a long time because people are waiting for you guys to grease wheels or something?
Posts: 16059 | Registered: Aug 2000
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Mine just bit the dust, too, about two nights ago... Erosomniac, do you still have the one?
Quid, I soooo feel your pain. Life without CPAP is very bad for me. When I did my sleep study, they went ahead and let me try a CPAP machine for the last hour of it... one hour of real sleep and I felt a decade younger. It was truly frightening, the difference it made.
Posts: 3846 | Registered: Apr 2004
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Noemon - bribery is extremely common here, but not in these circumstances. It's more likely that they'll roll their charges into the price of the machine. And that's also why Fahim is making the phone calls. If it was me calling, the price would end up much much higher. But no, that's not why it's taking so long. That's because everything here takes a long time and no one is ever in a hurry and efficiency has no meaning.
Jim-Me - yup. You understand perfectly.
They didn't call back yesterday, which is, of course, no surprise. Fahim will have to call them again. Sigh.
Posts: 8355 | Registered: Apr 2003
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none yet... there's a place here that can fix mine, but they have to have a prescription to do it. Which means I have to go through the sleep study all over again because the company that did my original one is no longer in existance, so I have no idea where to go for the medical records... grrr...
Posts: 3846 | Registered: Apr 2004
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Yes, the one we have in the store is still there - drop me an e-mail, and we can talk about getting it to you?
Posts: 4313 | Registered: Sep 2004
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I sympathize, quid. A month or so ago I had to get a new machine because I had taken mine over to my husband's house and he refused to let me take it when I left. It was a long 3 days getting a new one, and now I have to have another sleep study, too, or the insurance won't pay for it because it's been 6 years.
And now you've been 5 days! I hope you get one soon.
FWIW, when we used to send my brother and sister-in-law stuff to Sri Lanka, when we wrote on the box what it really was, like tools, or chocolate, they never got it. But if we wrote "educational materials" they got the box intact and unopened every time.
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Wow, now I feel guilty for being so irritated that I can't keep mine on... At least my problems aren't even half as bad as you guys'.. Good luck quid... :/ Wish me luck in trying to keep from tearing my mask off!
Posts: 4816 | Registered: Apr 2003
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rivka - no, no luck yet. Fahim will make calls today.
Jim-Me - that sucks, so completely. Does your primary physician have a copy of the sleep study? In Canada, they do, and I then got my primary to issue me a prescription for travel purposes (airport security) which can easily be used for other purposes.
Deadhorse - um, no, mine first started acting up just over a month ago and finally died completely about 3 weeks ago. But "educational materials" - that's something I haven't tried. Thanks for the tip. And for the record, that man needs to be horsewhipped for keeping your machine.
Ryuko - be patient. That's normal adjustment problems. It'll get better. But yes, by all means, try the nasal pillows. They're much easier for many people and far less claustrophobic.
Posts: 8355 | Registered: Apr 2003
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Ketchupqueen and quid: I haven't thought about pillows, but the problem's not claustrophobia I don't think. It doesn't bother me at all, except that sometimes it doesn't ramp up fast enough, and I want to breathe out of my mouth. I was thinking about getting a full face mask for that reason. I almost always take it off when I'm asleep, so I really have no idea why. Posts: 4816 | Registered: Apr 2003
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How long have you had it now? And you know you can bypass the ramp, right? I haven't used that since my very first month on the machine.
Posts: 8355 | Registered: Apr 2003
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I got the doctor through the sleep clinic... I don't even remember his name. I haven't had a primary care physisican in a while, so it's pretty well lost.
Posts: 3846 | Registered: Apr 2004
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Ryuko, call the doc who prescribed it for you and tell him/her about your problem. There might be something that s/he can suggest.
Posts: 21182 | Registered: Sep 2004
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Ryuko: you can bypass the ramp most likely. Let me guess . . . You put your mask on, you breath, and you wait for the machind to turn on automatically, right? Instead, turn it on manually. Press the on button, wherever that is, and that usually bypasses the ramp altogether.
Alternately, call the company that provided you with the machine and have them walk you through changing the settings over the phone. It's fairly easy to change these things - it usually takes about 30 seconds. (My respiratory therapist was also a friend from university days. I learned all sorts of stuff from her. )
JimMe, can you locate the name of the doc anywhere? What if you contact the state licensing board and ask for the names of all sleep specialists? Would going through that list - and it won't be very long - twig your memory?
Posts: 8355 | Registered: Apr 2003
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Nope, Quid, it's automatic. It starts at 5.0 and goes up according to the pressure it feels in my body. Faaaancy. Which reminds me, it neads cleaning. Posts: 4816 | Registered: Apr 2003
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it probably would, but he wasn't a sleep guy, he was an ENT guy... and you can bet there's tons of those in Dallas alone.
Thanks for the suggestions, but if I don't find one second hand it's probably going to be easier just to get a new study done...
Posts: 3846 | Registered: Apr 2004
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Jim, do you remember where you got the machine you have? Would it be possible to call them and get the doctor's name?
Posts: 21182 | Registered: Sep 2004
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And the company supplying your current machine ought to have a copy of the original report and the doctor's previous order in their files. But the documentation needed for these things is just ridiculous sometimes. I have to do a whole page of documentation of the necessity if I want a patient's CPAP oxygen to be warmed and/or humidified. Sleep apnea documentation and paperwork absolutely drive me up the WALL. Then the person moves or something breaks and it's like starting all over. It just doesn't make sense to me.
Posts: 1014 | Registered: Jul 2005
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Theaca, why are the machines so heavily regulated? It seems to me it's easier to get large doses of narcotics.
Posts: 21182 | Registered: Sep 2004
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Most of it is insurance related, I'd bet. CPAP equipment costs more than narcotics maybe? Although narcotics add up and CPAPs last awhile. In any case, the more hoops the insurance companies require, the less doctors tend to order and that saves money. After awhile the documentation begins to seem important. And it IS important, to some extent. But there are limits.
But there are hoops for narcotics too. Paperwork, documentations. Bleh. Worst medication hoop I've seen was for this girl with rheumatoid arthritis since age 16. She had it in great control and then moved across the country with her husband. Came to me to refill her medication X because it took 2 months to get in to a local rheumatologist. The insurance company sent me a form. They wanted dates, all the drugs she was on, how long she was on them, why she couldn't be on those drugs rather than expensive drug X, all the docs she had seen, the dates of hospitalizations the past 10 years, etc. She's had the SAME insurance for 3 years! She's been on the drug 18 months! And I, of course, had none of her old medical paperwork yet, as it takes time to get records transferred. The amount of detail impossible to guess at. I think I finally lost my temper and yelled at the woman on the phone who was being so obtuse about the whole thing. But, hey, until all the right papers got sent in, the company didn't have to pay for the drug. The patient did. $1000 a month or something like that. Some of my details are a bit fudged, because I don't remember exactly, but you get the idea.
Oh, don't get me wrong, documentation of medical problems and narcotics is very important, as are checks and balances. And more narcotic monitoring goes on than it appears. But when documentations are stretched out to waste the doctor's time and save the companies a few bucks then it is very frustrating.
Posts: 1014 | Registered: Jul 2005
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Haha. You should see the form I had to fill out on this lady with such severe urinary incontinence that she needed adult diapers. I couldn't just order the diapers. Oh no, I had a two page form to fill out about my plans, treatments, goals. In detail. I had to rewrite the whole dang thing yearly, too.
Oh, wheelchair repairs. Wasting my time documenting why the patient needs a new headrest or padding or whatever. Luckily the medical supply places and home health nurses help fill those out. But even then I have to sign them personally.
Posts: 1014 | Registered: Jul 2005
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Some are so grateful it's kind of sad. One wonders what other offices did to them. Others act like it's OUR fault they have to wait a week or more for the papers to go through. It's not like they sit on my desk more than 24 hours.
BTW, this is why so many offices won't take medicaid. The paperwork medicaid requires for EVERYTHING is incredibly time consuming for offices and staff, and they get paid squat by medicaid. We can make tons more money dealing with just other companies. My current office won't do medicaid. Just isn't profitable for an office as small and struggling as ours.
Posts: 1014 | Registered: Jul 2005
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Yeah, I've noticed that many offices that take medicaid are older doctors that have already made their money, or are state-established and largely underwritten.
Posts: 21182 | Registered: Sep 2004
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I didn't go the insurance route to buy my machine - didn't have insurance to cover it. But I worked for my friend's respiratory therapy company (accountant) and saw the amoung of paperwork they had to submit to the insurance companies. It was horrendous. Frequently, patients gave up on treatment because the paperwork was too intimidating.
How sad. And quite frankly, how very wrong of the insurance companies to make it that difficult to get proper medical treatment. *grrrrr!*
Posts: 8355 | Registered: Apr 2003
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