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New to Apnea Board - Frustrated with Fragmented Care
Hello Fellow Apnea Patients!!

Note: This is basically a post to vent my frustrations and also express my gratitude to this online community. Without the information gleaned from these posts, my learning curve would have been a lot higher although I still have much to learn.

I was recently diagnosed with moderate to severe Obstructive Sleep Apnea and just began CPAP therapy. I am about to go to sleep now and dutifully put on my CPAP gear. But before I do that, I just wanted to say that the care and information I have been receiving has been fragmented and at times, frustratingly bizarre. FYI, I myself am a medical student and also have a PhD in neuroscience, and even with the background I have, I still found it bewildering at times. I have learned so much by being a patient myself, and I now understand why the public is often frustrated with our fragmented, profit-driven healthcare system.

I have only seen a doctor ONCE through this whole process. I saw a sleep doctor/neurologist for my initial consultation. Since then I have only seen nurse practitioners and respiratory therapists, all of who have been very unhelpful (not a gripe against these professions or anything; it just has been my experience). I am still trouble-shooting and learning about OSA and CPAP BUT I have learned most of it on my own through the internet and trial and error, just as all of you have. After my sleep study, I spoke to a nurse practitioner who basically just gave me my sleep report and said I have the choice of CPAP or an oral device. I tried to ask questions about what my report meant but she gave very vague, general answers. So basically I paid a $50 co-pay just to get a copy of sleep study!

After my titration study, I went to see a supplier and respiratory therapist. I basically just went with the supplier next door to the sleep center because of convenience. I did not do any research or reading beforehand because I was expecting that the consultation would provide me with all the information I need!! How wrong I was! I was given no information regarding the types of masks or machines available. I had a one hour session with a respiratory therapist who did not allow me to ask questions until the last few minutes. Every time I tried to ask a question, he would say, "No questions until I am done. It will all make sense in the end" (which of course it didn't). However, I learned more about his own personal struggles with OSA and how his wife and each of his 4 children have OSA as well. In the last 15 minutes of the session, he pulled out a ResMed S9 Escape (I had no idea what machine I was getting at the time) and showed me the basic buttons and how set-up the humidifier. He then told me that I should "practice" hitting the on/off switch at night with my eyes closed so that I can hit the button if I need to at night (what a useless exercise). He then said I should go for the mask "upgrade" and pay an extra $40 because the basic mask they offered was crappy (why offer that mask at all then?). I just went with the upgrade because I was desperate to start therapy and get some relief for my sleep issues. And this is what makes me mad because I feel that as a patient, your suffering, desperation and lack of experience/knowledge creates a vulnerability that is easily taken advantage of. The upgrade ended up being a Philips Wisp Nasal Mask. He did not do any proper mask fitting as I had expected. He basically just eyeballed me and picked out a mask. The upgrade was terrible. I ended up feeling suffocated and pulling off my mask in the middle of the night for several weeks. And I don't have any claustrophobia at all. Fortunately, I had a ResMed Mirage FX mask that I took home from my sleep study, and I did not have this issue with this mask. However, it was a standard size that did not fit my face and constantly shifted at night. I went back and saw another respiratory therapist (I requested a different one after a such a bizarre initial consultation). She was nicer and less weird but she still only provided me with minimal information. She gave me a Mirage FX for Her (small). She did not fit me either or let me try on different sizes. I also told her that in addition to the mask not fitting, I was having issues with breathing against the air flow. I had found out on the internet about expiratory pressure relief and that my ResMed had the EPR feature (it's written right on the machine!). She said we should just wait to turn on the EPR until I try the new mask. I thought to myself why on earth should we wait? The EPR feature is a different problem from a poorly fitting mask. Why not just solve both problems at the same time? But again, as I was sleep deprived and frustrated, I was too tired to argue and just left with my new mask.

So, this new mask ended up being less suffocating but leaked like crazy. I was also still having difficulty breathing against the air flow. I found out on one of these threads about using aloe vera gel to help seal the mask. So I put aloe vera gel on my face and the edges of the mask and pressed the mask to my face for 20 seconds, and it basically created a suction effect which helped the mask stay put. It's not perfect but it was better than nothing. I still can't move around too much, and I would really like to be able to sleep on my side.

I went back to see the respiratory therapist just a few days ago to get the EPR adjusted and ask about another mask that would allow me to move more. I suggested the ResMed Activa. She said no, it would not work, because it would be too big and bulky for face. And that was it for masks! She basically said, no you do not have any other options.

As for the EPR, she said that she could adjust that herself without a doctor's prescription. And here is the most laughable part! As she was turning on the EPR, I asked her if she could show me how to do it. She then said, "No we don't want patients changing things themselves" and then she actually took her hand and covered up the dials as she was turning on the EPR!! I thought that was SO weird and childish.

When I got home and did more research on-line, I found out how easy it was to change the setting myself (Thanks Apnea Board!!). More importantly, I realized it was entirely in my right to know how to change the EPR. It is purely a comfort feature, not anything prescribed by a physician (as she admitted herself). The ResMed website also encourages patients to change the EPR themselves. So why did I waste all that time (waiting an extra week and making a 20 minute drive) just to get another person to do something I could have done myself?? I have found that healthcare practitioners often blame patients for "non-compliance" but at the same time, turn patients into children who stop thinking for themselves. As a future healthcare provider myself, all I can say, is that I will be all about patient empowerment and working with patients as equal partners in their care. I will hide nothing from my patients and allow them to take control of as much of their care as they desire and as reasonably possible.

So by turning on the EPR (she set it to "3" as I later found out) and sealing the mask with aloe vera gel, I finally got a full night with the CPAP machine (about 7 hours). Previously, I was averaging less than 4 hours. Gee, and it only took about a month! I woke up feeling really good for the first time since I can remember.

However, now I am experiencing chest discomfort, mostly in the center of my chest. Inhaling too deeply causes a tickling sensation that induces a fit of coughing. I would say that the discomfort feels like a pressure as if someone is sitting on my chest. I also wake up in the morning with fullness in my stomach and nausea which gradually disappears.

So that is where I am at now in the process....

Stay tune for more updates if you are interested.

And thanks for listening if you have gotten this far!!

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(08-03-2014, 12:27 AM)paige88 Wrote: I would say that the discomfort feels like a pressure as if someone is sitting on my chest. I also wake up in the morning with fullness in my stomach and nausea which gradually disappears.

So that is where I am at now in the process....

Stay tune for more updates if you are interested.

And thanks for listening if you have gotten this far!!
Welcome to the forum, paige88
Sorry to hear they gave you the runaround treatment and shame on them dumping the S9 Escape on you, S9 Elite would been a better option or S9 AutoSet even better. The Escape does not record any efficacy data (just hours using the machine each night) AHI and leak which is important to ascertain the effectiveness of the therapy

Chest discomfort is something you need to talk to your doctor, some say normal feeling when starting CPAP as muscle are working a bit harder but one need to be careful and not playing doctor when talking about chest pain especially the way you describe "as if someone is sitting on my chest"

For stomach pain, is common and called aerophagia, which literally means "air swallowing"
Some people find EPR is helpful or an APAP
Your user profile shows "CPAP Pressure: 4-6"
This indicate that you,re using APAP, is the machine is an S9 Escape Auto or 4-6 or might be referring to pressure 6 and EPR level set at 2
Model name printed next to on/off button

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Welcome paige88, it's fine to vent, just a couple of things, if you really want to take your treatment into your own hands, you don't want an Escape, you want either an Elite or Autoset.
I'm suprised your pressures would be that low if you have moderate to severe, you actually can't have moderate to severe, it's either one or the other but that doesn't matter.
On the sleep study report, it should tell you your AHI, 15 - 30 is moderate and 30+ is severe.
I would expect your pressure to be a fair bit higher as 4 - 6 would not be doing much.
As long as you are starting to feel the effects of it, then well done.
Keep an eye on the chest discomfort and also the fullness in the stomach and nausea, hopefully it will go soon, you maybe breathing through your mouth and need either a chin strap or a full face mask.
Keep at it, you can obviously see the benefits and good luck.
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It does sound like you've been having just too much fun. Sorry about all that.

It sounds like you have a few "growing pain" problems right now. First the discomfort in your stomach is probably aerophagia. Your mouth may be filling up with air too much and you're swallowing it. Not much else you can do with it actually. So the key is to figure out how to seal off the airflow with your tongue against the top of your mouth so the breathing only occurs through your nosie. A little practice and you'll get that done.

You're saying pressure 4/6. That would be correct if they have you on a set pressure of 6 with an epr of 3, because your machine will not go lower than 4. So that's fine if the 6 is controlling your apnea. That's what we don't know, and that's the most important thing: What is your AHI? That's the biggest thing we need to know right now.

As to future trying out things, I would suggest you try a nasal pillows mask such as the Resmed P10. ....and I believe you may need a chinstrap to encourage your jaw to stay forward and your mouth to stay shut. Note I say "encourage," not force. The idea behind any chinstrap, face mask, or loving relationship should be gentleness.

Good job taking charge of your own condition. That's what "enlightened" patient care should be all about. In the end I believe it makes it easier for the docs and techies, not more difficult, and I'm absolutely certain their success rates go way up when their patients know, understand, and participate in their health care.
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Hi paige88,
WELCOME! to the forum.!
It's good to hear that you are taking your healthcare into your own hands and that you are interested in understanding Your sleep apnea.
As far as masks go, there are so many out there so, don't be shy about trying as many different ones as you need, 'til you find the one that works for you.
If your chest pains persist, you should talk to your doc about it, but it could be that it will go away over time as you use your mask and machine.
Hang in there for more responses to your post and best of luck to you with your CPAP therapy.
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If I were you I would contact the DME (durable medical equipment supplier) tomorrow and gently request they exchange the Resmed Escape (brick) for a Resmed Autoset. Be careful not to accept an Escape Auto. If they don't respond favorably move your request level to demand. Don't settle for anything less.
If you want to manage and control your therapy you need full data capability and an Autoset can be set to a range of pressures and automatically adjust as your needs change throughout the night, when you roll fro back to side or enter REM sleep. You may not understand today but you will be glad latter that you made the change.

On another note in the US it is illegal for the DME to up charge you for equipment and supplies. There is one billing code for a CPAP/APAP so the DME receives the same payment for the cheapest brick or the fanciest APAP. Guess which one they choose to provide to unknowing patients like you.
The same is true of masks.
Mentioning that you are aware uf there unethical/illegal practice may strengthen your request or allow you to return everything and find an ethical honest provider.
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(08-03-2014, 12:27 AM)paige88 Wrote: I was recently diagnosed with moderate to severe Obstructive Sleep Apnea and just began CPAP therapy. I am about to go to sleep now and dutifully put on my CPAP gear. But before I do that, I just wanted to say that the care and information I have been receiving has been fragmented and at times, frustratingly bizarre. FYI, I myself am a medical student and also have a PhD in neuroscience, and even with the background I have, I still found it bewildering at times.

Unfortunately, you've already gotten about all you'll ever get, out of your encounter with the medical profession and equipment providers: a prescription and a machine.

Because of how insurance reimbursements work, the doctor's office will attempt to make any contact with you as short as possible, however in an attempt to retain an eternal stream of co-pays, will also not do anything that would allow you to get along without them, so they'll attempt to setup and endless string of not-so-helpful appointments.

That said, it's not magic. As a med student, you already know this. It's just physics and biology and is as much related to the physics of gas mechanics as it is medicine.

Getting your mask right requires trying a number of masks until you find one you like that leaks as little as possible, and that you like, and sometimes requires small modifications or procedures (using aloe, etc.).

edit: I think your machine might not collect data, which makes this next sentence not useful. 8-)

Getting your pressure right requires a machine that collect data and some (free!) software to read it. SleepyHead works nicely, even though it's still being polished, and helps you find the pressure that gives you the best results.


PS. Your DME was secretive because without the secret of the knob-twiddling, they have no reason to exist. Once you know how to do it, you could just have the FedEx driver drop off a machine at your house and eliminate your local DME completely.

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Welcome paige88! We could offer you more localized help if you would tell us in what part of the world you reside. We don't need chapter and verse, just country/state etc.
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Welcome to the board, Paige.

Welcome to the world of dealing with the medical mafia and assembly line medicine. Everything you've said indicates that your medical professionals are just going through the motions and ringing the cash register.

Basically, you got screwed big time.

You can roll over or try to fight for proper therapy. They'll keep screwing you if they can get away with it.

Most important is to get a fully data capable CPAP machine. Your S9 Escape only records time of usage and the machine settings. A fair number of people here have managed to get their machines changed by the DME.

If you do try to get it changed, read the links in my signature line. There are some very clear choices of new CPAP machines. Some are great, some have significant drawbacks.

Note, many DME's (CPAP sellers) will outright lie to you and say the S9 Escape collects data and show you the SD card. It ONLY records the time you use the machine and the machine settings. If it has a modem, it only sends the same data.

An S9 Elite machine is sort of like a micro sleep test every night. With the right software on your PC, it will record every breath you take all night long. It will detect apneas, and attempt to distinguish between various types of apnea. It will indicate whether and when you are snoring. It will detect leaks, either through your mouth being open or air escaping between the mask and your face. With the right software, you can tell your breathing rate, tidal volume, and a few other things.

The software will show you a graph where you can see, for instance, you had an apnea 2 hours after going to sleep, it was 22 seconds long. You can see that you had a long cluster of apneas at 2 AM. You can tell whether you stopped breathing for 12 seconds or 120 seconds. If you had a really bad night, you can tell whether you had a lot of apneas on that particular night.

Here's a thread on the free SleepyHead software and the information you can get out of it if you have an S9 Elite instead of your S9 Escape.

In my opinion, treating an apneac with anything but a fully data capable CPAP machine is like treating a diabetic by checking his blood sugar once a year instead of doing regular in-home blood sugar tests.

Unfortunately, even if you do get a good CPAP machine, your doctor and DME are probably going to be too lazy and uncaring to bother to read the copious data it collects. You will probably have to get the software and learn to manage your treatment yourself.
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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Welcome, as you can see your preaching to the choir. So many people have similar dealings with the ****#*##** DME. It really is too bad as you state they could be teaching us a lot. I won't even repeat my story as it just does no good.
It is good you are seeing the profession from the other side, it may not be as easy to help every person as we would hope. I think they get in a rut of not enough time and wanting to make money and it just results in what you have seen.

So keep on digging into the info, work on a full reporting machine and help yourself if they won't.

Good Luck!

Doc J (despite my nickname I am not a doctor)

Remember to donate to the board if you can, it has helped a lot of people including myself.
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