The total cpap experience continues

The message composing screen is not WYSIWYG.

Each button you press inserts a "begin change" and an "end change" in square brackets.
The followint is a result of clicking on the B (bold) button.[b][/b] the cursor waits for you to insert text between the command to start bold - [b] and the command to stop it [/b].


The [quote][/quote] option is very helpful when you're quoting somebody else.

And you can always write the commands by yourself too.

O.

crafty, great to see you back.

Some thoughts for you:
I don't have years of experience, I have 11mts.
....but, that's 11mths hanging around cpaptalk.com.

It may sound funny, but I am after the total cpap experience,
this is part of it.

I'm thrilled that you did get something from the presentation.
I'm thrilled that I raised important questions for you to pursue.....
post a new thread/s w/those questions and be amazed at the education that awaits you.
Check out all the information under the light bulb at the top of the forum home page.

Welcome! to an incredible world of learning, education and self-reliance.

I am my own best therapist.
It's my life.

It's your life.

To Craft (uncrafty), this editor does not appear to be a true WYSIWYG editor in the sense that I am used to anyway.

Use the preview function before submitting post and you will then see what you will actually get.

DME does stand for Durable Medical Equipment supplier. If you read through some threads on this site, you will find plenty of horror stories about them and a few positive experiences. Navigating through the intentionally shielded information and disinformation (intentional and non-intentional) can be tricky. There are web sites where merely inquiring as to whether a pressure seems right or should be changed will get you moderator attention that suggests it is an inappropriate subject for the forum I can understand the site engaging in CYA by saying a change should be made only after discussion with a doctor, but the tenor of the intervention is generally, pressure is for the doctor to decide and we should not engage in conversation about it.

This site seems to be the most open and frank in discussing therapy options and dissemination of correct information (or at least providing ways to get the correct information). With some discretion and a few grains of salt, one can find very valuable information here that at least my doctor has said is accurate.

There are some resources such as the "our wisdom" button near the top of the screen that can get people started with information to quickly bring them up to speed with some of the topics here.

Carbonman,

It sounds to me like you wandered into an "Introduction to Your New Guitar" class at the local mall's music store and then asked a question about how many there prefer to transpose into a different key instead of using a capo! Thanks for sharing your experience, because reading the threads you start is a major part of my total cpap experience!

The posts in this thread, from every poster in it, represent many of the reasons I keep coming back here--a presentation of an experience, some humor, some counterpoints and interpretation, an extended hand, some common ground, a lot of support and help, both general and specific, topical and technical.

I love this "place"!

jeff

ozij wrote:The message composing screen is not WYSIWYG.
Each button you press inserts a "begin change" and an "end change" in square brackets.
The followint is a result of clicking on the B (bold) button. the cursor waits for you to insert text between the command to start bold - and the command to stop it .
The

option is very helpful when you're quoting somebody else.
And you can always write the commands by yourself too.
O.

An unexpected but interesting side benefit of this forum is that by posting while trying to use the html code buttons and then previewing what I was trying to do before summiting my post, I am (without meaning to do so) learning html code. The preview function allows me to see my coding mistakes before I send the post to the forum so that I can fix the mistakes.

mar

bdp522 wrote:uncrafty,
now I'm crafty - for some reason the system didn't let me reply last night as crafty, so I tried "uncrafty" - now it seems to be working.

If you tell us what mask and machine you use we can give you lot's of tips.

Thanks for the invitation! (I also think I figured out how to use bold type. Not exactly WYSIWYG is it?)

I have a Respironics REMstar Auto with C-Flex and heated humidification. I changed doctors, and my new doc read the results of a sleep study I had last year, reported that I have "severe" sleep apnea (something my previous doctor apparently hadn't noticed!?), and said he'd call Praxair to order an auto-titrating machine. He also said that it was "dangerous" for me to take Ambien without a CPAP. In my present condition I can't sleep without Ambien, and I can't work six days a week without sleep. Thus, with visions of going to sleep and not waking up, I somehow expected quick response from Praxair. Wrong. But that's another story.

The original auto titration was set from 5-20. Later, because of my complaints that I felt assaulted by the machine, the Dr. wrote an order to adjust it to 5-15. Finally, after a new sleep study that showed optimum results at 10, he re-wrote the order for 5-10, where it sits now.

I was originally fitted with a ResMed Mirage Activa LT, large. I have a full beard, and experienced some (but not a lot) of leakage. That was at the higher pressures. At the more recent sleep study they used a nasal pillow mask and it seemed to work better. I now have a ResMed Swift LT, Medium. It seemed to work ok when originally fitted. But now the pillows seem to collapse, severely obstructing airflow.

I have not been very compliant, but I want to be. The first issue, I think, was that the auto-titration was set to go too high. More recently it's been those collapsing pillows. Tonight I am going to go back to the Mirage Activa and see whether it works okay now, with the reduced pressure.

I don't know which of the three C-Flex settings I'm on. (Interestingly, the prescription says "C-Flex at 10 cm of water pressure". The prescription was dictated by an MD who, it says, is a diplomate, American Board of Sleep Medicine. It was signed by my primary care doc. Hm...

I'd be interested in knowing what others' experience has been with auto-titration vs. a set pressure.

An internet capable machine is not needed, just a machine that collects and displays data, or one that collects data and allows us to read the data card. With data we can decide if we need to change a pressure and see the results of that change. C-flex also has settings of 1-3, some find that a change of c-flex settings makes a huge difference in treatment.
You also need to know that the billing code for data capable and non-data capable machines is the same.The cost to the insurance company is the same for both machines. Check out cpap.com and compare to what your insurance paid for your machine, you may be quite surprised.

Now that I know that we're talking about data-capable (not internet-capable) machines, I'm interested in finding out how to read the data on the card, as well as the display.

Brenda

Thanks, Brenda! And thanks to others who have responded. This is a great community.

Still off-topic but slightly relevant. After you click the Quote button and go into edit mode you can also delete any of the text between the html quote codes. Just don't delete the quote codes and brackets. This way you can refer to just a portion of the quote. Along those lines you can also insert quote codes (with brackets) and then type your new text between the new quotes. This allows you to comment separately for different portions of the post you're addressing.

Hi Crafty!

You have a great machine there! I don't agree with setting it from 5-10. It can take the machine a while to get to a pressure of ten and you know that is what's needed to stent the airway open. I would start at 8(at least) and let it go to 11. This gives you a little wiggle room just in case you need a slightly higher pressure. Once you can check your data you can decide if it needs to go higher or lower. To check your data you will need the Encore Viewer software and a card reader. Our hosts, cpap.com has this at this link;
https://www.cpap.com/productpage-bundle.php?BundleID=64

Your c-flex can be set from 1-3. 1 being the least drop in pressure on exhale and 3 being the most. Here is where you can get info on settings for the machine;
http://www.cpap-supply.com/Articles.asp?ID=130

If you are going to change anything make only one change at a time so you will be able to tell which changes help and which don't. It is also a good idea to write down the original settings as you scroll through them, just in case you need to go back to one of them.

I found that the constant pressure changes of the auto disrupted my sleep. I do much better at one set pressure(cpap mode). I use c-flex but found it most comfortable for myself at a setting of 2. I use a pressure of 10.5 and do just fine with no c-flex, but using c-flex just feels more natural to me. I don't use ramp at all. I did for the first week or 2 but haven't felt the need since then.

I haven't used either of those masks so I won't be able to help much there. But I have heard the Activa referred to as a love sick octopus. The mask will pulsate with the c-flex. So be ready! Here are some links by RestedGal about the Activa mask;
viewtopic.php?p=35284

I hope some of this helps!

Brenda

.
Carbonman,

It's beautiful to see how BIG your heart is in hungering to share this great OSA/CPAP resource, CPAPTalk.com, with others so they can "find their lives" too. Good move . . . passing your notes where they might help!

Once the bug bites us, and we feel so SUPPORTED, UNDERSTOOD, INFORMED as we work together to get our lives back . . . and once that REALLY HAPPENS and our health improves so noticeably . . . it is difficult NOT to want to tell everyone about it!!

Crafty . . . a BIG WELCOME to you! We are eager to offer to you the support and help that we all enjoy! Keep us posted!

Joy

Carbonman, Somehow your description of this meeting made me sad, but I smiled when I pictured you handing out those notes about cpaptalk. How does it feel to refer to yourself as as an "educated cpap user"? You used the term twice!

Crafty, I'm so glad you found Carbonman, he's a very special guy here. You might want to check out https://www.cpap.com and click on the software package EncoreViewer. It's not cheap and Insurance doesn't pay for it but it's a must for successful therapy. Welcome! Dori

DoriC wrote:Carbonman, How does it feel to refer to yourself as as an "educated cpap user"? You used the term twice!
Dori

Dori, it feels real good to be an educated cpap user.
Feels like it carries a certain responsibility......
I guess I didn't really give myself that credit,
because compared to the real helpers here,
I'm a pup.

I think it is because my two AWAKE experiences,
shows me,
I do know a lot of stuff about cpap therapy.

It has also occurred to me, as I read these reactions to what I did last night,
that maybe this is my way to give back. I'm not very good at helping here in the group,
so maybe my calling is to go get them and bring them here.

jnk wrote: I love this "place"!
jeff

JNK, you sick, twisted, guitar play'n, mask wear'n freak.....
I love this place, too.

You know, speaking of the cpap experience, we, you and me,
we're coming up on 1 year. I know I'm not the same person that
stumbled in here, I don't think you are either.
Man, are we a couple of lucky so and so's.

So.....where is the party going to be???

crafty wrote:
Now that I know that we're talking about data-capable (not internet-capable) machines, I'm interested in finding out how to read the data on the card, as well as the display.
Thanks, Brenda! And thanks to others who have responded. This is a great community.

crafty, you're on the road to your new life now.
You have a great machine.
You just need the software and card reader.
You have a wealth of absolutely wonderful, educated people to show you the path.

Somewhere down that path, I hope to see you, face to face, again.

Thanks to all who replied with such great support and encouragement.

Last night I had the best sleep I've had in months. I switched back to the "octopus" as one of you called it. It's not as comfortable overall as the nasal pillow but the latter was suffocating me. Yes, I did experience the pulsating but at least I could breathe!

Oh, and yesterday my DME (thanks for confirming the definition) called me back within two minutes of my leaving a message. I'm going to try this mask for a few nights, then visit with him on Tuesday morning, if needed, to explore alternatives.

By the way - re-reading the sleep study. It's clear that the physician (MD, board-certified sleep specialist) uses the term "C-flex" as a synonym for "pressure" - or perhaps "adjustable pressure." Hm... (Recalling carbonman's astonishment at the use of that term, I'm now seeing that the director of the sleep center is not the only one who uses it that way. I'm wondering if this is becoming a new usage by default or sloppiness - which often happens in English usage over time. (E.g. the word "prevent" once meant "allow" or "provide for".)

I'll check out the card reader and software. I had wondered about whether my machine shouldn't simply be set at 10 and let it go at that. More later...

Richard

crafty wrote:
I was originally fitted with a ResMed Mirage Activa LT, large. I have a full beard, and experienced some (but not a lot) of leakage. That was at the higher pressures. At the more recent sleep study they used a nasal pillow mask and it seemed to work better. I now have a ResMed Swift LT, Medium. It seemed to work ok when originally fitted. But now the pillows seem to collapse, severely obstructing airflow.

Crafty, I don't know if anyone has mentioned that the Swift LT pillows need regular replacement. The recommendation is at least monthly. My insurance covers two new pillow sets per month. I find they actually last longer than a month, but it is nice to have extras, so I can wash several at once, and have them on hand. So, if the collapsing is the main reason the LT is not working, this could be why.

On the issue of auto-machines, my experience has been that it works best to have the lower pressure set slightly under your average or usual pressure, and the top set at least a few points above. That way there is some flexibility for the machine to run as low as possible, while still having the room to correct any breathing issues. If the lower number is set too low, the machine cannot go up in pressure fast enough to catch the apneas, as it is supposed to.

Your set pressure, with a low of 5 and a high of 10, for me, would suffocate me at the bottom. It is also likely that you sometimes need more than 10. even setting it at 11 or 12 would give you some extra room, without creating a tornado.

Sounds like you may have already had this suggested, not sure.

Carbonman

You bring a unique point of view to the forum, one that contains a wonderful balance. Good for you, taking it out into the world, and good for you, being willing to take feedback on what you did and experienced. It takes a lot to be open to hearing someone else understood things differently than you did, and to take that information into account as you go. No wonder you have come such a long way in such a short time!

carbonman wrote:I thought about Wulfman's wondering what it would be like to be
thrown out of one of these meetings....I thought, well, maybe this is it.

So......I guess we still don't know.......

Thanks again for reporting your experiences. Incredible!!!

Den