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Therapy numbers, lack of them, weight loss, etc
08-11-2014, 12:07 AM
08-11-2014, 04:43 AM
(08-10-2014, 11:19 PM)retired_guy Wrote: I'm not a big fan of badmouthing machines, even "Bricks." Yes, I would like it if everyone had a nice S9 Autoset or equivalent, and knew how to use it. But the facts are some people with very real apnea problems are not going to be able to adapt to anything other than the "brick" their Doc's give them.
I'm not sure I understand your comment. If a person has a manual "brick" CPAP, a fully data capable CPAP machine can give them the exact same therapy as the brick. The patient will feel no difference. There's nothing for the patient to adapt to. If the patient is prescribed an APAP and it bothers the patient, it can be set to deliver a constant manual pressure just like the brick. However, the fully data capable CPAP will record information that a competent doctor or educated patient can use to confirm the therapy is working and fix problems if they occur.
Yes, brick CPAP's have saved a lot of lives. Proper monitoring with fully data capable CPAP's can save more lives with very extra cost or effort for the patient.
08-11-2014, 01:45 PM
(08-11-2014, 04:43 AM)archangle Wrote: If the patient is prescribed an APAP and it bothers the patient, it can be set to deliver a constant manual pressure just like the brick.
ergo, very "brick like."
My point is pretty simple: I would like it very much if all the manufacturers quit offering non-data capable machines, and if all Docs and DME's would take it on themselves to do a more quality job in monitoring their patients.
But in today's world, if someone comes to me and says "I lost a zillion pounds, I no longer fall asleep when going to the bathroom, I have a ton of energy and just finished repainting the roof on the Sistine Chapel without a ladder, and I feel GREAT! ---- my first response to them is not going to be "oh no, you have a brick."
I feel we have to dance with who brought us, and sometimes all we can do is encourage folks by looking at the symptoms, or lack of them, just like their docs are doing.
Arch, your advice and counsel around here in my opinion is among the very best we have, so I don't want you to think I'm critical of you in any way whatsoever. That is not where I'm trying to go. I just think we need to remind ourselves that sometimes people have what they have, and we are the ones that need to adjust to it.
I'm loving it that Galactus has done so very well. It's great when it works....
08-11-2014, 03:43 PM
08-11-2014, 08:10 PM
(08-10-2014, 05:11 PM)zonk Wrote: As for honesty and seriously
Hey now your tshirt and retireds won't even get me a bus ride let alone one of those fancy dancy machines you just pointed to.
But seriously I looked at them, and yah they have more data, and it looks like more options, apap vpap whatever aflex bflex cflex I think I saw an a-zflex too. But really what does it mean? What will they do for me that I am not getting now? I mean I could get a hyabusa that goes 200+ but where the hell am I going to use that? I don't want to go from dial up to t3 and get lost here. This seems to work so why all the bells and whistles?
(08-10-2014, 07:35 PM)retired_guy Wrote:(08-10-2014, 04:45 PM)Galactus Wrote: I am considering taking a hammer to my brick to get something better but I don't think it will work.........
Ok, I'll BITE! what is the puppy going to do for me? If he pees on my brick will they give me a better machine?
(08-10-2014, 10:49 PM)archangle Wrote: You got screwed and it puts your health at risk because you're treating blind.
Is that accurate? I am just asking because I don't know. I was under the impression that when they did the sleep study they went through all the options and that this setup is what worked for me and that is why they gave it to me. Is that blind treatment? Did they tell me a line of Bologna?
(08-10-2014, 10:49 PM)archangle Wrote: You might consider watching Craigslist for a real CPAP machine. I've found S9 AutoSet and PRS1 Auto machines within driving distance for $300, but I did have to watch for about 3 months before I found the right machine at the right price. You will see a lot of machines for sale at ridiculously high prices, but the reasonable deal is sometimes out there.
These deals I have seen, I don't exactly know what machine I am looking for specifically, there seems to be quite a few brands, and I don't have all the numbers down yet, but yes there are a bunch on cl for all kinds of prices from $50-$900. I can usually find deals that way when I know specifically what I am looking for.
(08-10-2014, 10:49 PM)archangle Wrote: You could also get a copy of your prescription and buy at online retail price. Be sure to call on the phone and see if they sell below their advertised prices. Supplier #2 sells used machines and has a good reputation.
That sounds expensive!
Just wondering aloud now, If I were to be complaining to my sleep doctor saying...... This machine isn't working for me ...... because..... and so I need this other machine?? Is that a possibility to work? To get them to give me a different machine? Any suggestions??
(08-10-2014, 11:19 PM)retired_guy Wrote: That's not what I want to do. I want to encourage people to use their machines and improve their lives. Galactus is a splendid example of being able to do just that in spite of having a less than top end machine. He's bright enough not to chuck it all because we think he has the wrong machine, and he's proven to himself that it is helping him.
I think that rightfully I am scared, I have now become the crap pap machine poster child. I'm afraid, very afraid! Really though it is helping me, and they did just hand it to me, and they changed my mask twice for free. Of course they acted like they were doing me a favor the whole time. But again, I am feeling better. I think I just have pap envy as I read about all these other machines, not that I understand them or what they do better, but they sound good.
(08-10-2014, 11:19 PM)retired_guy Wrote: I have an elderly friend who has been on cpap for a long time. She doesn't know what kind of machine she has, she just knows to turn it on at night. When I talk to her about ahi, or leak numbers, etc...... all I get is the deer in the headlights response. But she's doing what she's supposed to do as best she can. Should I convince her that her machine is crap? That she's wasting her time using it?
I knew it was too good to last, first comes the good comparison, and now I feel like that lady on the new commercials, "I'll just post my pictures here on my wall", "Hashbrown selfie", and "That's not how this works!"
(08-10-2014, 11:19 PM)retired_guy Wrote: ........and if a brick could help me lose 65 pounds? Sign me up. Do I eat it raw, or with onions?
YOU DO NOT EAT THE BRICK! You eat the carrots, the celery and the lettuce with the tomatoes. DO NOT EAT THE BRICK!
(08-11-2014, 01:45 PM)retired_guy Wrote: I'm loving it that Galactus has done so very well. It's great when it works....
Thanks for the kind words, I hope it keeps working.
Thanks so much for all teh help and advice, it is appreciated.
If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
08-11-2014, 10:08 PM
Galactus, you have to remember that many of us hoseheads have become so data crazed that we have forgotten how to use our other senses to figure out problems. Data does, however, make it easier to help others remotely but we sometimes get carried away in our data crazed state. Yes it would be better if only data capable machines were out on the market and it would be great if all machines had a real auto mode, but this is not the world that we live in which frustrates some of us to no end.
Do what works for you and sleep well.
(08-10-2014, 04:45 PM)Galactus Wrote: Thanks for all the info, much appreciated.
I had a sleep study in December 2013. The Sleep Dr (whom I never saw) read the study and recommended CPAP w/ fixed pressure of 14. Thank God and this forum that I started researching before the machine was ordered. I spoke with the DME, and the rep was kind enough to indicate that they needed a pressure range in order to make it an Auto machine. My PCP (who admits to knowing nothing about sleep medicine) was cooperative, and wrote the Rx for 10 - 14. I then dealt with the DME and requested the S9 Autoset that I have been using since January.
The sleep study AHI was 36. My AHI is now averaging less than 1, my rousings are usually 2 or less, often 0. The ONLY reason for this success is that I have had daily access to the data, to see what was working and what was not, what changes made a difference, etc. Why was this so critical for me??? The Sleep Specialist did not forward to me the most significant bit of data from the sleep study. My OSA is highly positional - the AHI was 20 times higher on my back than on my side. I had to re-discover this fact experimentally - not possible without the data.
In your situation, you have to rely on the Sleep Professionals, and on indirect indications that your therapy is working or not, which may take quite a while to become evident. With direct data, the knowledge of a problem can be immediate, and steps can be taken just as quickly to resolve any issue.
If I were in your situation, I would do whatever it took to obtain a full-data machine, preferably an Auto. As Zonk says - Two machines in one. I'll leave it to others to discuss ResMed vs PR. Without the data, you are leaving control of your therapy in the hands of people, who, in too many cases, have proved unworthy of that trust. With the data, you can perform your own titration study as often as you choose, in your own environment.
Recommendation: Look for a deal on Craigslist or wherever, for a full-data auto-PAP. Then retire your brick to backup duty. After all, with the data, you'll know much better what settings would be suitable for your brick when it is needful to pull it out of the closet and turn it on.
Just my 2 cents.
Big congrats on the significant weight loss. Good luck on your continuing journey.
PAPing in NE Ohio, with a pack of Cairn terriers
08-13-2014, 06:29 PM
PaytonA, Becker44A, and everyone else who contributed, thanks for all the information. I understand what you're all saying. So I have two final questions for everyone and anyone interested;
1- What complaint from me to my doctor would yield their changing the machine for me at this point?
2- Regardless of whether I can get them to do it or I have to look for one on my own, what machine would be the machine to get?
If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
08-13-2014, 07:45 PM
(08-13-2014, 06:29 PM)Galactus Wrote: 2- Regardless of whether I can get them to do it or I have to look for one on my own, what machine would be the machine to get?
1) S9 AutoSet (NOT Escape Auto), PRS1 Auto.
2) S9 Elite, PRS1 Pro.
The auto machines are better because they can do auto or manual. The manual CPAP machines are OK, especially if you learn to read your own data and make your own adjustments.
S9 vs. PRS1 is roughly a tossup.
ResMed is coming out with AirSense 10 machines. I'd tend to wait until they've proven themselves, and SleepyHead supports them. They look like they'll be a small improvement on the S9 series, but not a great leap. If you get an A10, get the AutoSet or Elite.
(08-13-2014, 06:29 PM)Galactus Wrote: PaytonA, Becker44A, and everyone else who contributed, thanks for all the information. I understand what you're all saying. So I have two final questions for everyone and anyone interested;1- You don,t have a complaint as such but nice to get some feedback of whats going on
2- Auto-PAP cost few dollars more than fixed pressure machine but can be used in CPAP mode or auto mode ... two machines in one and both are data capable machines (except S9 Escape Auto)
S9 AutoSet or PRS1 Auto are the most popular machines
I like my S9 AutoSet but have not used PRS1 Auto
As you,re happy with your machine, why not stick with PRS1, a lot cheaper than ResMed, check Supplier #2 prices
Suppliers List http://www.apneaboard.com/forums/Thread-...plier-List
Edit: There are two version of PRS1 Auto .... 50 series (550) or 60 series (560)
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