[Diagnosis] Care pathway / first steps

[MrEGuy]

Hello,

I have been able to get my wife to undertake a home sleep study and I am wondering what the normal / best way for things to progress from here is?

We live in Newcastle Australia. Our fairly young GP has not encountered sleep Aponea in a patient before and has refereed my wife to a common sleep centres chain for an in home sleep study.
The study identified,
- RDI 26.9/hr
- AHI 26/hr
- "Hypopnoeas and OSA were severe during supine sleep (AHI 79/hr)"
- "Respiratory related arousal per hour were 19hr"
- "Oxygen nadir 86% and De-saturation event index 11.8/hr"
- Epworth Sleepiness score (11/24)
- Average heart rate 80bpm.

We were advised by the sleep clinic lady (who was not a sleep doctor) that we should look into a CPAP machine and made a booking for a trial. I asked about other treatments and investigating the root cause of the problem and she said in a roundabout way that a mouthpiece and losing weight would help but not enough and that the root cause wasn’t all that relevant as the treatment would likely be a CPAP regardless. She also stated a few times that CPAP was “The gold standard” in treatment (it kind of reminded me of fancy dish washing tablets). We went back to our GP who said to do the trial and recommend that my wife have a consultation with a sleep specialist prior to buying a CPAP machine.

We found out that our local chemist has people trained to do home sleep studies and CPAP trials etc. We started a trail of a machine through the chemist as they were more convenient and appeared to offer the same service as the sleep centre. Unlike the sleep centre the chemist does not have a sleep doctor on staff but refers their clients back to their GP to get a referral if they discover anything that requires further investigation (their sleep study results are reviewed by a sleep doctor at their head office in another state).

Last night was the first night of the trial and it appears to have gone well. The machine reports that last night’s AHI was 2. My wife says that the only thing different was that she has a sore nose. I have observed that her general mood appears better than normal and she has not mentioned that she is tired or fatigued in any way (normally it will come up in conversation that she is still tired).

What is a typical pathway from here? I got the distinct impression from the lady at the sleep centre was that you try a machine and if it helps you, you buy it and happy days. The chemist was much the same. This largely sounds like what I have read online too. Our GPs advice about a consultation with a specialist before buying a machine sounds good and conservative but contradicts the general impression I am getting about Sleep Aponea treatment. Also I read online that people get a “prescription” for a machine, but here we are without a prescription trailing an automatic machine set with “typical” settings by the chemist lady as the sleep study did not state any recommended settings. I think the machine is set to work between 4 and 20.

In regards to buying a machine I am finding it’s not like buying a telly. There is not a lot of information about the machines available and the information I am finding is either directed at healthcare professionals or is just full of incoherent marketing spin. Also only a few places appear to be advertising their prices and some appear to want to see a prescription first before discussing machines. We are trialling a Philips “DreamStation Auto CPAPHumHT” I believe that the unit has a heated humidifier and a heated tube. I believe that this is a high end machine and that the chemist is asking $2400(they will even credit us the trial costs off the price if we buy the machine). The chemist also has a very reasonable payment plan. If the machine works for my wife, has all the features we would want and isn’t overpriced I would be happy buy the machine and not bother shopping around). Is this a good machine and is the price right? Are there any other features or considerations that we should take into consideration?

This machine has Bluetooth and the app on the phone tells you how many hours of sleep you got and your AHI. There is also an optional Wi-Fi gadget that appears to send your data back to Philips for review and they will advise you if they see anything odd (although the brochures didn’t really explain what the Wi-Fi did). I noticed that there is third party SD card software available online to read the SD cards. Being technically minded I would be quite happy to help my wife review the data on the card and make adjustments where necessary in the long term. What is a typical process for reviewing the treatment and the machines settings? Is it beneficial to manage this ourselves or just go back to the specialist periodically. Also how often do people retake the home sleep studies? I believe that Medicare will cover one every 12 months.

I know this is a long post; any help comment or suggestions would be greatly appreciated to help get this sorted out and my wife some well-earned sleep :-)

Thanks

[DeepBreathing]

G'day MrEGuy, welcome to Apnea Board.

The first thing I have to say is that all CPAP gear is overpriced in Australia, regardless of whether you buy it from your local chemist or an online supplier. Second, you do not need a prescription to purchase a CPAP in this country, but you may do if you buy overseas. Third, it's been my experience (and I think that of most longer-term users) that provided everything goes reasonably smoothly this is a therapy you can manage yourself without repeated visits to a sleep specialist. And fourth, it would be great if your wife was to participate in this forum and really "own" her treatment.

Her diagnosis of AHI = 26 is at the high end of moderate apnea, verging on severe (which starts at 30). Her REM AHI = 79 is very severe. In terms of treatment options, CPAP is probably the best out there at the moment. You could try a dental appliance, surgery to open up the airway, various devices to electrically stimulate the tongue and a host of others. You will also find charlatans who will take your money and teach you to "breathe correctly". Most of these will work to some extent (other than the shonk) but most will not achieve the degree of AHI reduction needed and only CPAP provides actual data which a) proves the treatment is working and b) allows you to fine tune it.

The Dreamstation is brand new on the market, from Philips Respironics who are one of the big two CPAP suppliers. The other biggie is Resmed, which is notionally an Australian company and manufacture the majority of their machines in Sydney. In addition there are BMC (a Chinese Resmed type knock-off who also go under the name of ResSmart), Fisher & Paykel, De Vilbiss and others. Personally I'd stick with the big two, as there is a much better support network.

I'd strongly suggest you check out the suppliers list linked at the top of this page before you lay down $2400 for a machine in Newcastle. Even with the weaker dollar, freight and the Border Force "handling charge" you will probably make a substantial saving. Some suppliers don't require a prescription for sales into Australia but some do. If so, get your GP to write a letter on his/her official letterhead giving their provider number and setting out what you need. I'd suggest words along the lines of "autosetting CPAP device, humidifier, heated hose, mask complete with all accessories to patient's requirements". That covers the seller and is sufficiently flexible that you can order more or less what you want. In the absence of anything to the contrary I'd be looking at the Philips Dreamstation Auto or the Resmed AirSense AutoSet. These are both auto-titrating machines with full data capabilities.

Check with your health fund as to what rebate is available and whether they would cover an imported machine. That may tip the scales financially. You also need to consider the warranty situation in case something goes wrong - you will likely have to return the machine to the US to get it fixed (even if it's a Resmed made in Sydney!).

Probably the hardest part of CPAP is the mask. You need to get one which is comfortable, fits well, doesn't leak and doesn't cause pressure sores. Many people have to try several different masks before they get the one that is right for them. This can get expensive...

The bluetooth and "phone home" systems only provide basic data (and I doubt if the "phone home" will actually work in Oz if you import a machine). The very best way to manage the treatment is to use SleepyHead software. There is a link at the top of this page. SleepyHead is written by a guy called Mark Watkins in Queensland. It's a free download but I encourage everybody to make a donation so that Mark can keep developing the program. With a full data machine, SleepyHead and support from this forum you can definitely manage your own (or your wife's) therapy. Only if there are complications is it necessary to see a sleep specialist.

[PaulaO2]

You've come to a good place! There's a bunch of other Aussies here to give advice from that perspective.

Here is a list of machines to consider:
http://www.apneaboard.com/wiki/index.php...ne_Choices

You want one that is data capable and the one you have is. It is also an auto which is also good.

Something to keep in mind is that sleep apnea treatment is not a "take a pill and feel better immediately" kind of thing. For many people it can take a while. She'll likely feel more tired for a while as her body and brain adjust to this thing called "sleep".

And one night of data is insignificant. You are looking for trends and averages. Which is why a data capable device is so important.

AND the machine is useless if the mask isn't right for her face and her sleep patterns. There are a LOT of masks out there for a reason. Face shapes, personal tastes and preferences, sleep positions, etc. Does she breathe through her mouth during sleep? If so, then she'll need either a nasal pillow or nasal mask with a chin strap or a full face mask. If she decides to go full face mask (FFM) then she may need to try several of them before she finds the one that works for her.

[trish6hundred]

Hi MrEGuy,
WELCOME! to the forum.!
I wish your wife much success with her CPAP therapy and it’s good she has you to look out for her.
Good luck to both of you and let us know of her progress and feel free to ask questions to help you understand all things sleep apnea.

[MrEGuy]

Thank you for your replies very helpful.

Last night she was only able to leave the nasal pillow mask on for 2 hours before she it go to her. I am sure she will get use to it in time. She will own her treatment in time but right now she is coming to terms with everything.

Thank you for the list of suppliers, the price our local chemist out on the machine looks about right. Also had a look at a few American sites and was gobsmacked at the difference. I think I will look into the process of getting one from the us so that I can organize something by the time the trial comes to an end.

Once again thanks for your help and I am sure I will see you around on the forum :-)

[PoolQ]

Look into the different types of masks, this is very important. Personally I cannot use a nose only type of mask because I have a problem exhaling into pressure. The next level machine up is a BiLevel made just for people like me. If your wife has the same issue and this "leave the nasal pillow mask on for 2 hours before she it go to her" says she "might", the first thing to do is try a full face mask (FFM) because the area of the mask that she exhales into is larger and that helps with the pressure. If this does not work she may need the BiLevel machine.

You will see that there are four levels of machine
1. CPAP only, very low end and not recommended
2. APAP for all the "normal" people
3. VPAP or BiLevel for us sensitives types
4. ASV for people with lots of central apneas

The price goes up with the level above, you can pretty much tell what the machine is based on price. Here in the US it's something like: $600, $800, $1700, $5400. Pretty obvious steps in cost and not like $20 difference or something.

The other thing is that each machine can be set to provide all the same therapy modes and the machines below it, so the ASV machine can do everything that can be done.

Remember that this is a treatment and not a cure. The air way collapses, blocking the flow of air, some people have this and others do not-as far as I know you cannot "fix" this, but you can treat it so you can sleep well and not suffer from the medical issues that it can cause.

Get sleephead installed and load up the data from the SD card, figure out hw to set up and post a screen image and we will help you tune up the machine.

[PaulaO2]

Check out this thread:
http://www.apneaboard.com/forums/Thread-...-a-machine

It is mainly Aussies discussing the prices and how to get machines from the States. There are two suppliers in our Supplier's List that ship internationally. Even with shipping, it is still way cheaper than buying locally.