New to this. My experiences...

[kteague]

Blarg,
I'm just curious - did the person who made you privy to the mask options know your father is a doctor? Through the years when I worked at a hospital, it seemed I got preferential treatment, like I was "one of them" and a part of the good guys club. Now so far removed, and especially when I say I am not working, I don't think it's my imagination that the manner in which I am related to is often substandard. When I start talking in medical terminology, it helps a bit till they start feeling like I'm challenging their "gospel" knowledge. Fifteen years ago my input was valued, now it often seems to aggravate medical professionals. Funny, but I wouldn't have even known the difference had I never lived on the other side. I may be a bit jaded, and I certainly don't mean to imply this is true of all medical professionals - just an observation on one possibility why not every one gets fully informed from day 1.
Kathy

[blarg]

I'm just curious - did the person who made you privy to the mask options know your father is a doctor?

Not to my knowledge, but anything's possible. And you're right about the preferential treatment in any business. If you work in cable tv, you get treated nicer by the cable company. The part people don't realize is that DMEs are businesses. If you treat them like you'd treat any other company that wants to "help" you then you come out just fine as a general rule. Your cable company doesn't tell you which cable box to use that will give you the best experience for the lowest cost. They give you their basic model, and try to upsell you for extra cash. I think it's sad that so many people are so naive about the medical industry to not realize it's an industry and that they can have very good care if they are paired up with a decent DME that doesn't mind listening to them. They have to take the lead though, or of course they'll get whatever's cheapest for the provider. The sadness to me is that peoples' bodies become another commodity, but I'm not sure that turning it over to the government would fix anything. I think people need to take responsibility for their own health, especially given the realities of our current medical industry.

Rested Gal, he was pretty nice and urged me to try on a nasal pillow interface (I think it was a swift, not sure) while he was here, so kudos to him on that, but it's very possible that helpful attitude only came out once I showed very quickly I knew what I was in for. As soon as he started unboxing an M-series, I made a break for the kitchen and promptly came back with my pie tin. He saw what I was doing and noted that he had replaced 5 humidifiers for that problem but thinks they've got it fixed now.

Snoredog, I asked about the Soyala specifically and they had never heard of Somnotech. Also, I don't generally have trouble falling asleep, but it took me hours and hours in the sleep lab because their bed was uncomfortable for me. I don't think the results on the sleep study are indicative of a normal night at all for me. I was only asleep 2 hours anyway.

My first night went pretty well. It took me forever to fall asleep, but since I'm on break I had all the time in the world. I just kept trying to relax and go for it. This morning I woke up after only 6 hours of sleep feeling like I had slept for my usual 10-12+ except far more alert than I've been for as long as I can remember. It feels like I'm on caffeine pills plus yerba mate and all I did was wake up. After only 6 hours of sleep!

YIPPEE!

I wouldn't call it a miracle, but it's pretty damn close. Once I get used to actually falling asleep, then I'll be unstoppable.

[rested gal]

Once I get used to actually falling asleep, then I'll be unstoppable.

You already are! LOL!!! And I mean that as a tremendous compliment!!!

[snoregirl]

Blarg,

I hate to go off topic but...

I just have to add a quick comment on your cable tv story and the fact that we are dealing with INDUSTRIES here.

I so totally agree with you.

I called the cable company years ago when I moved to my current house and told them what I wanted. Basic cable, stated very clearly with the name of the cheapest service and that I didn't want any extras at all. We didn't watch much TV nor did we have the time. They sent me stuff.

Stupidly I hooked up the box that they sent to the TV thinking I needed this box to make the cable work. What did I know, never had bought cable before.

A month later I looked at the bill and it said something like "expanded plus service". I called the company right away and asked what this was. They said that was for the box. I found out that I didn't need a box and was paying for more than I had asked for. I asked why I was sent the box when I specifically asked for basic service with no extras. They said, and this is a quote I can remember 20 years later "BECAUSE EVERYONE WANTS THIS". I said well I don't, and you can take it back and give me what I asked for right now.

AMAZING.

Same thing works here with CPAP 20 years later with statements like "This is the mask everyone gets" or "We always start with these", or "This is what your doctor ordered" etc. Always have to research and be informed since it is a business and a business exists to make a profit.

[blarg]

Exactly snoregirl. How long do most people spend researching cell phones before they buy one? Comparing plans, features, cost, etc? Why don't people put even a fraction as much time in researching their health problems, learning about the features of each mask/machine, costs, etc? I just don't get it.

[snoregirl]

I think that there is just something that people feel we are all supposed to blindly trust doctors and the healthcare industry with anything.

While I am sure there are many good pharmacies, doctors, DMEs etc. I have life experience that says it is always better to check.

My daughter was dispensed the wrong amount of antibiotics less than 6 months ago -- pharmacy error. I know the drug and caught it. Then they wanted me to pay more than what I would have paid for the correct prescription for the rest of what they should have given me the first time had they done it correctly. Fat chance. Or I could have not noticed and given out the meds and then said "all gone" and she would have had an incomplete course of antibiotics.

Doc made a serious error prescribing drugs a number of years ago for one of my kids. Caught that too before I left the office. I had some idea of the dosage and it just didn't look right. Mathmatical calculation error by the doc.

I am sure that those are not the only incidents, but the ones that come to mind quickly.

Even with that, my husband will still come home from the pharmacy and I will ask him what he was prescribed and he says "I don't know" as he pops it in his mouth.

How does he know 1) it is indeed the drug the doc prescribed, 2) the doc prescribed the right stuff

I go check the drug name and see that it actually is for what I have, and I look up the color and markings of the pill before anything unknown goes in my mouth.

Call me paranoid, but mistakes do happen and I don't want to pay the consequences.

[roster]

[quote="snoregirl"]Blarg,

.................................................................................

I just have to add a quick comment on your cable tv story and the fact that we are dealing with INDUSTRIES here.

............................................

[SelfSeeker]

Welcome to the boards blarg,

I would not quickly jump to get the tonsils out. It may not help at all and you would have lost a great infection fighting machine.

viewtopic.php?t=13680&highlight=tonsils

I think, if I understood correctly your Dr is letting you autotitrate yourself.

My suggestion, get the APAP, get the software, plug yourself up.

Set the machine to at least the minimum pressure of the mask. Yes some masks have a minimum pressure needed to wash out carbon dioxide. (I know the comfort curve needs a minimum pressure of 6.)

Until you get your reader set up, look on top of the machine for the 90% pressure, then adust the auto to just under that. See how that goes and make changes.

Do not forget to leave time for mask and leak adustments.

If you do not think your airways are opening up with the auto, then think of removing the tonsils.

Just because your oxygen level is not coming to low does not mean you can not be treated for apnea issues.

Somewhere, Snoregirl wrote that her snoring was waking her, xPAP helps.

Others may wake just as the oxygen begins to drop so the oxygen does not go low, but still do not get restfull sleep. UARS (Upper Airway Resistance Syndrome)

Make sure you do not have other health issues as well, such as anemia, diabetes or Vit B deficiancy (which will leave you very tired).

Some links:

http://www.clevelandclinicmeded.com/dis ... /sleep.htm

http://www.apneasupport.org/viewtopic.php?t=5443

http://www.chestjournal.org/cgi/content/full/115/4/1127

http://ajrccm.atsjournals.org/cgi/conte ... 161/5/1412

http://ajrccm.atsjournals.org/cgi/conte ... 161/5/1413


Blarg, I wish you much luck with your dad, the ER Doc.

You are quickly becoming your best advocate.

Keep us posted.

[snoregirl]

Rooster you say

----------------------------------------
"I just would like to point out that cable tv companies are not a good example since most of them are able to operate as near monopolies in their service areas."
________________________________________________


While I understand the situation with industries like cable where they have service areas and we as consumers are not allowed to find another provider, they still have a bottom line ($$) and anytime they have me buy a more expensive service than I had intended they are making more money. Same basic principle. Only difference is I only have two choices, get them to fix it so I am buying what I want, or not get cable at all. I can't just up and find another cable provider. Hopefully that day will come soon as it has with telephone long distance, and electric suppliers....Profit motivations are the same as any other business. I could go into the cable people who keep adding trash channels to the basic rate on an annual basis and upping the price but I won't.

An interesting note on the cable people. Recently I had my mail forwarded to a PO box due to vandalism at my mailbox. The cable bill is the only bill that I have (and I have many others) that can't seem to make it to my house via forwarding. 3 months now and I haven't seen one bill. They can seem to find my phone number to tell me I haven't paid. I have checked the envelope (of a friend and in person at the local cable office) for "do not forward" etc and can find nothing. The cable people can't/won't help figure out where my bills are going....On top of that I find the cable people very nasty. I wonder if that is because they are a monopoly or close enough to it that they just don't care. They tell me "talk to the post office", well I know my mailman and he goes out of his way to bring to the door stuff he thinks is important rather than just forwarding it to the PO box, even though he doesn't have to. I really doubt he is sitting there going "Ha Ha, I think I will forward everything else but not the cable bill, this will really mess with her mind, Ha Ha"


And Yes SelfSeeker, I did post that my apnea itself is mild yet my snoring is out of control. Doesn't really matter why one doesn't reach stage 3, 4 and REM sleep (apnea, snoring waking you constantly, or leg movement etc). If you can't get to deep sleep, the results are the same. You are slugish, tired and other health issues that result from lack of restorative sleep.

I could actually remember hearing myself snore as I drifted off and was jolted awake. Drove my husband crazy as he is a light sleeper so he was suffereing too. Funny thing was sleep report said "light snoring". That is a hoot because my husband and kids say I "saw wood" all night long. No one wants to sleep in the same room with me. Since I have been on CPAP I have stopped snoring, and stopped waking. No bathroom stops in the middle of the night (was doing 2 or 3 probably because I was awake and psychologically I thought, better go so I don't wake up again..). Just got up from a nice 7.5 hour sleep with NO interuptions. Mild apnea yes (enough to qualify me for CPAP on its own) but in my non-medical opinion the snoring was the greater problem.

[blarg]

Actually, in your Apria case, it seems that they are very much like the cable company, because your only choice is to pay out of pocket or use their monopoly on your insurance money. With cable you can always go to satellite as well.

Anyway, after 2 nights on the APAP, I really don't see why I should have my tonsils out. Thus far, my machine shows 90% pressure of 8.3 as a seven day average (I woke up with it on 12 today so I bet that number will keep going up as I fill out the week, or if I could see the actual numbers on the card...)

So, my dad wants to keep me off XPAP, but I'm already much more alert and happier with the machine. I don't think taking my tonsils out will really change matters much. The reason the doc thinks so is because my tonsils are about the size of "crab apples" according to him, but I'm doing just fine on the hose. It takes me about 5-6 hours to fall asleep at the moment with my Activa, but then when I sleep the other 5-6 hours in my normal sleeping block that I'm used to regardless, I feel much better than if I had slept the full 12 without the mask. lol. Sure, it's annoying to toss and turn for 5-6 hours, but it's all for a good cause and isn't interrupting my normal schedule anyway.

I keep having small leaks around my eyes or mouth (seems to be either or, so either it's leaking in my eyes or by my mouth) so I'm going to head in on Monday and see if my DME really will make good on the "change masks as much as you want" promise. I've adjusted it looser, different angles, tighter, etc, and basically since I go to sleep on my stomach it's really hard to get a good seal. It's a Large, and it could simply be too big. Currently showing a leak of 36.6 but half the night I'm up fixing every little leak as I move around, so I bet that number would be about double if I were just slapping it on and going to sleep. Mainly though it's just that it bugs me when it blows air in my eyes. I'm still getting enough of a seal to give me therapy obviously. We'll see what they do on Monday.

[blarg]

Sorry for the double post, just an update.

Last night I laid down and went to sleep. No 5-6 hours tossing and turning, I just laid down and fell asleep. Woke up 6 hours later, went back to sleep for a bit and ended up getting the full 8. Still feel on top of the world.

My dad now says "Whatever works and gives you relief" and I don't plan on having my tonsils out since I'm doing just fine with the CPAP. He did note though that I could be feeling better because I just had "Three good nights". I would have told him I've never EVER felt like this before, but it's not worth it. He'll figure it out in a month when I still love the machine to death.

I told my mom that once I get my schedule normalized to 8 hours I'll start scooting it forward a bit more towards days so I can be normal. She said, "You? Normal? Wow, this really is life changing."

[bdp522]

LOL! I guess you take after your Mom?!? Congrats on your good nights, and may you have many, many more!

Brenda

PS the only bad nights I've had since starting treatment were 2 nights I couldn't pap due to medical procedures!

[cpapjack]

I keep having small leaks around my eyes or mouth (seems to be either or, so either it's leaking in my eyes or by my mouth) so I'm going to head in on Monday and see if my DME really will make good on the "change masks as much as you want" promise. I've adjusted it looser, different angles, tighter, etc, and basically since I go to sleep on my stomach it's really hard to get a good seal. It's a Large, and it could simply be too big. Currently showing a leak of 36.6 but half the night I'm up fixing every little leak as I move around, so I bet that number would be about double if I were just slapping it on and going to sleep. Mainly though it's just that it bugs me when it blows air in my eyes. I'm still getting enough of a seal to give me therapy obviously. We'll see what they do on Monday.

Blarg,

Welcome to the boards. I had this same problem when I first started using the Activa. I was using a large and when I asked this question on here, someone suggested trying a smaller size. I asked my DME about getting a smaller sized cushion and he gave me a shallow cushion to try. That was the ticket. Made a world of difference. No more leaks.

Jack

[rested gal]

I had this same problem when I first started using the Activa. I was using a large and when I asked this question on here, someone suggested trying a smaller size. I asked my DME about getting a smaller sized cushion and he gave me a shallow cushion to try. That was the ticket. Made a world of difference. No more leaks.

Jack

Good point, Jack.

Someone who used to talk to a nurse who did support for resmed said the nurse told them she thought the "shallow" cushion fit more people than the "standard".

blarg, you might want to give both the "shallow" and "standard" size cushions a try.

[blarg]

I just got back from my "mask refitting" appointment with the DME. Wow was that an experience.

I guess I'm just too helpful. I brought in a night's printout from Encore to show the leaks I was complaining about. The tech, who had been perfectly nice up to that point, said, "WHERE did you get THIS from?!?!?!" "Uh.....Encore....?" "You stay RIGHT HERE, I'll be back." She grabbed the smart card from my machine and left.

I had the distinct feeling of being sent to the principal's office. About 10 minutes later she comes back, "Your card still shows all this info, so HOW did you get it back on there?" "I just didn't delete it." "What do you mean?" "I mean there's a setting that says whether to delete the data or not, and I chose not to so you guys could do your thing as well."

She looked at me like I was trying to tell her that the sky was green for a few seconds and then said, "I'll be right back." She left again with my smart card.

Obviously the smart thing to do was to play dumb. Oh well. My cover's already blown.

She comes back and says, "I can't find this setting in Encore anywhere." "I'd be happy to show you." "I don't think I can do that." "No worries, I'm comfortable here." She got specifically annoyed that I didn't feel the need to correct her problem for her. "Ok, fine, follow me."

So I showed her where the .reg files are and noted that double clicking one or the other will change the setting. She said, "Oh. I'm sorry, you see, most people don't know that's there and if they have the software they're not supposed to have..... *glare*, they delete their compliance data and then we can't convince the insurance company that they're being compliant. I'm sorry if I was abrupt, let's start over." (Yeah, oops, I treated you like you're 3 and you actually know more than I do about the software. Rewind.)

So then we went back to the room we started in, and I pulled out my Activa. I noted that I was using a Large cushion at the moment and it's probably just too big. "Where did you get that mask?" "From the tech that gave me the machine." "We normally don't give that mask out from the start." "Why, it isn't your cheapest?" *glare* "And you want an Auto permanently?" "Not your cheapest machine either?" *double glare*

At this point I was really sick of answering all of her little snarky questions, so I said, "Look, if you have concerns about my therapy, talk to my doctor. I'm here to get a mask fit, so can we do that please?" "First tell me if you changed pressures on your machine." "If I didn't it wouldn't have been set at what was prescribed." "How do you mean?" "The original tech left it at CPAP 15 when the whole point of having an Auto was to titrate me since I never did a titration sleep study." "You never had a sleep study?" (insert my eye roll here) "My AHI was 37. I never had a second study to get titrated." "Oh."

I finally just said, "Ok, so what masks do you have?" She pulled out 3, which were a comfort classic, a comfort gel, and something else (standard nasal mask). I asked about nasal pillows. She said that she didn't have any in stock. Whatever, I'll survive. I was more convinced she just didn't know what nasal pillows are. So, I grabbed the comfort gel and started fitting it. It's much smaller than my activa cushion and fits better, but does need to be tighter to seal at all. She didn't have extra cushions for the Activa, so fine, I'll take the comfort gel. She let me keep my Activa and take the comfort gel, so I guess I'll just find cushions on my own.

The crazy thing is up until today I was relatively convinced that they actually wanted to help me. Now I know that I should use them for another free mask or two (if what I have doesn't work) and then ignore the fact that they exist. According to the tech today, my insurance won't rent machines, it'll only buy them, but it'll only do that after a month or two of good compliance. The month or two isn't actually "renting" the machine but that they're loaning it to me for free or some such. I'm hoping it means we're over the "will insurance reimburse an auto" hump. Who knows. I just know that today's appointment was no fun.