What was explained poorly when you began CPAP/BiPAP?

[sleepstar]

Interested to know this.

I gather there are many things that were poorly explained (masks, settings, humidifier) seeing as this forum is a godsend for many newcomers.

What's something in particular though you wish was explained better? What would have helped?

It's always distressing when I see a patient has the incorrect assumption that the machine is "giving them oxygen". Or reducing the humidifier "lowers the pressure". Anyone have these experiences?

It would be helpful to know what you experienced and what you think could have been done better.

[Pugsy]

Crap...nice long thought out post and dropped the mouse and lost everything.

Realistic expectations. The machine can't fix everything that is wrong with us. It fixes stuff related to sleep apnea.

Mainly explain the "miracle" or lack of in many cases and why some people don't get the miracle or they only get part of the miracle and feel the therapy isn't working because they don't get the miracle that they read about others getting.

Yes, there is a lot of truth to the "give it time" thing but while giving it time it doesn't hurt to have patients dig for other possible culprits for not experiencing the miracle. You know what they are so I won't list them again.

I had the cessation of nocturia and the cessation of the morning killer headaches miracles pretty much over night but I can count on one hand the number of "energy" miracles I have had in over 5 years but I have other issues that affect how I feel and the best cpap therapy in the world can't fix those issues.

People tend to hear what they want to hear and they want to put all their problems in the sleep apnea basket and have the machine fix them. Unfortunately it doesn't always work out that way and they blame it on the cpap therapy.

Make sure that the patient has realistic expectations and use the time that we have to "give it time" to help investigate other issues just in case there are other things which might be a culprit.
First thing...make sure the therapy isn't sub optimal though...no amount of time can fix sub optimal therapy.

[Ryands]

All of it.

For me on the NHS it was "Here is a machine. Put this mask on. *nurse checks for leaks and adjusts accordingly* there you go. Don't tip the machine when water is in the humidifier. See you in 6 months."

I would have liked as a minimum some basics of mask care and cleaning. What AHI was and what it should be. How to prevent leaks. And probably a pamphlet detaining exactly what apneao is and what the machine does.

Seriously, the first time I cleaned the mask getting those straps back in place with the right lengths was a nightmare!

I think they may have deliberately avoided mentioning the AHI as mine is around 7 average and they are happy with that. (I am not, which is why I am adjusting settings myself at home and playing around after research and they probably don't want people doing that.)

[JQLewis]

The short answer is everything. Just to pick out two really big ones:

1- Data capable machines are essential to effective therapy: No one involved in my initial treatment could explain this to me, as apparently no one involved in my initial treatment believed it to be true. Nothing, imo, is more important and more in need of change. Only quacks allow their patients to have bricks.

2- Nasal CPAP is preferable: I was asked at my first sleep study whether I breathed through my mouth or nose. Never having been asked this before I thought about it and answered, "both, I guess". I was handed a FFM and nothing more was ever said about it. When I finally got a hold of my sleep study and read it, it recommended nasal CPAP. No doctor or technician ever said so. I finally tried to train myself to nose breathe, and was able to do so without too much difficulty.

[Davidwnc]

Hmmmm.....that was over 20 years ago. I can't even remember what was explained about what we are going to be doing at the end of the week....

I remember the sleep doctor explained that my AHI was 118 and that the average length of each apnea was about 28 seconds. He also explained that my oxygen saturation levels were getting down to the high 60's/low 70's quite often (and for too long.) It probably would have been nice if he had explained just how severe my sleeping problem was....but in the end it didn't matter because I took quite well to CPAP therapy...

As for when I got my 'equipment' I do remember that the lady came to my house, and explained how the machine worked. If I remember right it was a Sullivan IV and I think that was a very new model at that point. I don't think she explained to me how to get a new mask/hose when the old ones wore out (if she did, I didn't hear/remember it) - I went for a couple of years on that mask, before it broke (when I was on a business trip to Phoenix Arizona....luckily I was able to source a replacement the next day....amazing how quickly you learn things when you need to!)

[BlackSpinner]

had maybe 15 minutes - mostly to size the mask, some cleaning instructions.
What would have been nice was a check list for when I got home and had to put it together.

[Guest]

1- Data capable machines are essential to effective therapy: No one involved in my initial treatment could explain this to me, as apparently no one involved in my initial treatment believed it to be true. Nothing, imo, is more important and more in need of change. Only quacks allow their patients to have bricks.

To dovetail Get involved in "your therapy" - it is your health understand and manage it if you can.

2- Nasal CPAP is preferable:

And yes breathing thru your nose is important - change if you can. At least become aware of how you do breath.

[Krelvin]

Never saw a Sleep DR the first two times. The first where one would expect to see one, I never recalled having a face to face. Just did the sleep study, they faxed the info over to the DME (Apria) and I went to pick up the machine.

First DME visit 8yrs ago... They showed how the machine worked, put on a mask, made sure I could do that and basically let me go. Not a lot of detail. DME was Apria.

Second DME visit 6yrs ago. This was a replacement of my now dead machine. I already had been using Xpap for 2 years already and knew what I was doing. New machine, but I really just got the Clinicians manual and did the details myself. DME was Apria as well.

Recently... I got a new machine. This time I saw a Sleep Dr first, showed him my data (was surprised I had it all), got a sleep study since the original was too old and I really didn't have a full copy of it, got the report, he basically wrote the RX the way I wanted and I got a DME (not Apria though that was one of the options). The DME was nice, obviously I had been using for 8yrs now and knew what is what... Mask fitting for a different type of mask was pretty complete and took time. Only issue was co-pay which eventually got straightened out, but I took home the machine, already had a clinicians manual to adjust the machine and learn all of the options. The take home package however had lots of info with it including using and care of the machine (generic descriptions), what OSA is etc.. Never really read it much since I already knew what I was doing, but if someone was new, I would hope they would at least go over it.

So... basically, not a lot of info was given the first time round, already knew what I was doing the second and third round.

I scanned the info docs if someone wants to see them.

[Wulfman...]

Interested to know this.

I gather there are many things that were poorly explained (masks, settings, humidifier) seeing as this forum is a godsend for many newcomers.

What's something in particular though you wish was explained better? What would have helped?

It's always distressing when I see a patient has the incorrect assumption that the machine is "giving them oxygen". Or reducing the humidifier "lowers the pressure". Anyone have these experiences?

It would be helpful to know what you experienced and what you think could have been done better.

I learned almost everything from this forum (and lots of reading on the Internet) and one of the CPAP.COM employees (Becky, who directed me to the then-new data-capable Respironics machines and answered some mask sizing questions).
My "sleep doctor" was pretty worthless with a nasty personality......had three meetings with him (one before sleep study and two after) and couldn't wait to get out of his office.

In hindsight, the only thing I might have changed would have been to experiment with my pressures a little sooner......otherwise, I wouldn't change a thing.


Den

.

[justinjustin]

This is just a brainstorm, but I think I just had a business idea.

What if there was an agency of Cpap / sleep apnea experts that were available to DMEs as an added service, or sold direct to patients, to put new Cpap users in touch with someone that can follow their treatment and be 'on call' to initially set expectations, give expert advice and workarounds and troubleshooting?

The idea would be like 'expert xpap coaching', but not clinical like a respiratory therapist or admins at DME (I found them almost useless). We could have some way to credential the experts, guaranteeing they know their stuff, then their time is offered for an hourly rate.

I don't know about all of you, but I would have benefitted tremendously by having a caring compassionate expert there at the beginning to help me along and avoid common pitfalls and discouragements, while the DME was basically a merchandise paper-pusher.

Thoughts?
Reasons why this would never work in 100 years?
Would any of you have paid for a service like that? I know I would!

[guest nan]

1: You need to practice exhaling for a longer period of time, you don't exhale long enough
2: Don't step on your hose, you'll break it
That was the extent of my "learning" from the DME....... came here and LEARNED exactly what I needed to know. AHI below 1, average 0.4, been at this 4 1/2 years and am doing GREAT!!!!!!!! Oh, almost forgot.... if you buy this machine it is only $1600, if you buy that other one its $2000 and you don't really need the expensive one...... guess which machine was a brick and which was an auto, AND I had to pay cash up front!!!! Never been back to them, this site is my "help" and our hosts are my supplier for most things.
Best of luck to all the newbies, you have come to the right place to get your problems SOLVED
Cheers
Nan

[kteague]

Excuse me while I pull out my soapbox...

It was the utter cluelessness of the sleep doctor and DME personnel regarding the potential harm of overuse or misuse of the ramp feature that nearly killed me - and no I am not being melodramatic. I came here and said the same thing I'd repeatedly told my medical professionals - I doze off quickly but wake up in a few short minutes feeling like I'm suffocating. Every time this happened I would do as instructed and hit the ramp to start over. No one had figured out what I was describing was during the ramp period, and that the setting of 4 was suffocating me. Due to the many frequent restarts, I was spending most of my night at that substandard setting and rarely reaching a therapeutic level. I came here back when Chat was a vibrant functional community, and immediately in there it was suggested I either turn the ramp off or decrease the time along with increasing the pressure. I saw an almost immediate improvement in the length of time I could stay asleep. Still had some other things to work through, but that one thing was my turning point. In retrospect, that was so elementary those treating me should have been ashamed. And I wrote the doctor a letter and told him so.

[john5396]

How to adjust my mask.

The DME did a fairly good job of explaing the machine and cleaning protocols, etc. I was using the resmed Liberty which is complex to fit (getting the tension right..). She spent a while fitting the mask and basically told me to keep it like that.

[sleepstar]

These experiences you have all contributed are invaluable. Thank you.

[Ogeo]

...That I would have to be creative to find solutions to my problems with my therapy.
...That I would be on my own to find a mask that would fit me and to figure out if it did fit me or not.
...That the DME would eventually tell me that they can no longer help me find a mask.
...That I would need to call and make an appointment with a doctor to qualify for my insurance needs for compliance.
...That the DME didn't care about anything other than compliance.
...That I wanted my AHI under 5.
...What would be some signs of problems that I should be aware of and report to a doctor.
...That it would take time to feel results and to be patient.

AND MOST IMPORTANTLY...

...THAT THE BEST SOURCE OF INFO ON THERAPY IS CPAPTALK.COM

With the help of everyone here, I am learning alot. I am still looking for the ideal mask if one really exist. In 54 days, I've been through 4 FFM, and 3 pillow mask. So far the Nuance Pro works best by cutting a hole in a chin strap and putting the tube through it and using it to hold the mask in place. With pressure ranging from 21 to 25 it makes most mask fly off my face causing noisy leaks which keep me awake.