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Therapy numbers, lack of them, weight loss, etc
#1
Ok, so I've been on pap now for 6 months. I have been feeling better, and sleeping better etc. I have my ups and downs with the machine the mask my summer allergies and all that jazz. I've learned a lot from the people here and received some good advice. But I am wondering about a few things.....

1- Apparently when I got my unit I got a brick. I wasn't able to get anything else. Maybe I didn't bitch loud enough because I didn't know better. But that's water under the bridge, I have what I have and I'm using it. Sooooo is there any useful data to get from my brick? Is there a reason to bother getting it?

2- I've lost a bunch of weight, we'll just say 65+ pounds at this time. I spoke with my Dr as I have heard that with weight changes the pressures might need to be adjusted. He said I'm 18 and that was when I was heavier so the best case is they'd lower it. He asked if it was bothering me. I said it wasn't, I actually shut off the ramp because that annoyed me more than the 18 did. He said if it wasn't bothering me than having too much pressure didn't effect anything and not to worry about it.

Thoughts? Opinions? Anyone care to offer anything? Just pondering.
If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
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#2
(08-09-2014, 08:30 PM)Galactus Wrote: 1- Apparently when I got my unit I got a brick. I wasn't able to get anything else. Maybe I didn't bitch loud enough because I didn't know better. But that's water under the bridge, I have what I have and I'm using it. Sooooo is there any useful data to get from my brick? Is there a reason to bother getting it?

The proof is in the pudding.... It would be nice if everyone had a top end machine and new how to make use of it. But they don't. So what's really important is how you are feeling. If you're sleeping well, and don't have other symptoms, then your machine is probably working for you just fine.

Without another test, you can't know that though, so it becomes a judgement call as to whether or not anything much could be gained with continued refinement.

(08-09-2014, 08:30 PM)Galactus Wrote: 2- I've lost a bunch of weight, we'll just say 65+ pounds at this time.

I'm impressed! That's good stuff!


(08-09-2014, 08:30 PM)Galactus Wrote: He said I'm 18 and that was when I was heavier so the best case is they'd lower it.

You're way young for all this!!! Ask your mother for crying out loud...............

Oh, and about the pressure: I think his point is why lower it if you are comfortable enough with it just staying where it is (whatever that is). You "could" lower it, but then with titration and using the machine you have, how will you really know if it is still doing it's job?

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#3
Yeah, what he said..If it works, don't fix it. When my stuff works, I usually fix it 'til it's broke.

Look at the bright side, someday that brick will break and you can get something better.

There is a lot of pressure at 18 but only if it's your age. If the mask doesn't leak, stay the course.
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#4
Hi Galactus,
CONGRATULATIONS! on your weight loss.
trish6hundred
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#5
(08-09-2014, 08:30 PM)Galactus Wrote: Sooooo is there any useful data to get from my brick? Is there a reason to bother getting it?
Zilch, beside how many hours using the machine each night
Yes, there is every reason to bother about getting it Too-funny

Feeling better is a good start but we cannot ascertain the effectiveness of the therapy by feeling alone

The money you,re saving on food, can be put towards an auto-PAP. This is the beauty of auto-PAP, lost some weight or had a glass too many, no problem ... the machine adjust pressure to your needs throughout the night
I suggest PRS1 Auto, same model as the brick you,re using so you can use the same humidifier. Supplier #2 is good source for used and new machines. Congrats on the weight loss, loosing fat is good, loosing muscles not so good
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#6
Thanks for all the info, much appreciated.

@retired_guy; Sleeping well, most of the other symptoms like falling asleep for no reason during the day, peeing 10x a night etc., they have all but gone away, and overall feeling better. I do believe it is working, so I think you're right. Thanks on the weight, it isn't easy but it is worth it, and I'm happy. As to 18, that's my pressure, I can only wish it was my age, but good one never the less!

@surferdude2; I am considering taking a hammer to my brick to get something better but I don't think it will work, though I think a stun gun would work for it.... I have also fixed things till they broke so I know the feeling.

@trish6hundred; Thanks so much, long tough road, but good.

@zonk; You know the lady told me they could at least see if the mask was leaking or some other stuff, but I don't know if that is true or not. Who said I was saving money on food? You think losing weight is cheaper than eating all the cheap bad for me food?

Really though in all honesty does anyone seriously suggest I spend any money for another machine just to get the data? I see units on CL all the time for cheap money, but would it really make sense to buy one?

If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
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#7
(08-10-2014, 04:45 PM)Galactus Wrote: @zonk; You know the lady told me they could at least see if the mask was leaking or some other stuff, but I don't know if that is true or not. Who said I was saving money on food? You think losing weight is cheaper than eating all the cheap bad for me food?

Really though in all honesty does anyone seriously suggest I spend any money for another machine just to get the data? I see units on CL all the time for cheap money, but would it really make sense to buy one?
I meant to say, loosing few kilos will put few extra pounds in your wallet Coffee

As for honesty and seriously
Definitely I would sell the T-shirt on my back and retired_guy T-shirt as well to get my hand on auto data capable machine Too-funny

From: http://respironicsremstars.respironics.com/
and http://www.healthcare.philips.com/asset....-guide.pdf

Advanced event detection and reporting
REMstar Plus N/A
REMstar Auto AHI, FL, RERA, snore, leak, CA, OA, HY, PB


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#8
(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.........

....wanta borrow a puppy?

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#9
(08-09-2014, 08:30 PM)Galactus Wrote: 1- Apparently when I got my unit I got a brick. I wasn't able to get anything else. Maybe I didn't bitch loud enough because I didn't know better. But that's water under the bridge, I have what I have and I'm using it. Sooooo is there any useful data to get from my brick? Is there a reason to bother getting it?

You got screwed and it puts your health at risk because you're treating blind.

The machine does at least give you a nice record of your sleep times, so you can see how much sleep you're getting, and at what time. Sometimes this is useful to a small extent. You can see if you're waking up and taking the machine off a lot at night, etc.

(Of course, it actually shows "CPAP On" time, not true sleep time.)

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.

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.
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#10
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. If I were to be militant against these machines I wonder how many people I might convince to just give it all up because it's so complicated?

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 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?

Yes, in a perfect world everyone would have a nice machine and know how to set it up perfectly for their use. But we don't live in that world. We live in one where we just have to do the best we can with what we've got.

........and if a brick could help me lose 65 pounds? Sign me up. Do I eat it raw, or with onions?

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