Noobie Story from Canada

[J-P]

Hi guys 'n' gals

I hope this is the right place to share my experience so far and to feel out what's normal, or to get advice from the community. I'll gladly be reading through all the tips and advice on here (already made some notes). See below for my experience so far:

I'm based in Montreal Canada, and new to CPAP. I haven't got my machine yet, but I was diagnosed with severe OSA quite recently by a private lab after diagnostic (Alice machine) and a Titration study. I don't fully understand AHI yet (don't have my results with me writing this), but I had >60-75 events per hour so I'm way above the 'serious' >30 events threshold. My blood-oxygen level was down to <65% for >3hrs on the night I was tested, but was shown to drastically improve on the titration study (>95% for 7 hours). There has been no appointment set up so far with any pneumologist or specialist (only a written note that I definitely need to get a machine, which was not exactly a surprise), I've asked for that meeting to happen, as I highlighted other serious issues that I suspect are downstream issues caused by the OSA (Type 2 Diabetes was diagnosed, along with mild peripheral neuropathy).

For the record, I'm a relatively active 38 year old (I could work out more) but I'm not obese (I'm a heavily built guy, that's true and I weigh 260lb and I'm about 6ft1" so though my BMI says otherwise my muscle mass is high). I want to push with the support of a pneumologist for a PSG (lab Polysomnography test) to assess the scale of nerve damage etc. Feeling a little ignored by the clinic right now as all they seem motivated by is to make me to buy 'specifically' their machine (as opposed to getting it elsewhere). I'm probably going to give up on them due to their approach and I'll pursue a direct prescription through another doctor. This obviously removes me as one of their clients and cuts me out of getting my data sent to their lab. Is that terrible? Should I pursue another sleep doctor or clinic to see if they'll take me and my rogue machine?

Now, normally - I would have had to wait for >6 months to see a doctor on our provincial health system. I operate heavy machinery and drive heavy load-bearing vehicles in public spaces. So I elected not to wait and pushed a friend (a doctor) to prescribe me for tests which is why I'm here now. Better now than a year away or a few squished pedestrians. I suspect that I've had OSA undiagnosed for many years (at least 5-10) but it's become more present recently.

Due to a lack of insurance (and Insurance companies such as Blue Cross stating that they wouldn't be willing to provide coverage now I've had a diagnosis, anything Apnea related would be 'an exclusion') I'll probably now be buying a machine from Ontario. I'm looking at getting the Respironics DreamStation AutoCPAP (model: CAX501T12). I'll also probably get the sanitiser and filter as well as the 'whisp' nasal mask (that's what I used on my titration study, and it worked well enough). If that's a bad choice for some reason I don't know - do please let me know why.

Any comments or advice welcome. FYI the price from Biron (the private clinic) on the machine by itself was over 2k CAD. Without anything. I can get the entire kit bundled together for $1400 elsewhere (year supply of filters, mask + spare etc).

I won't get into the ethical debate around coverage/insurance and what's covered under provincial and what's not. Let's just say, I come from a country (the UK originally) where this entire thing would have been completely free of charge with zero insurance payments which is a bit of a point of irritation atm, I'm sure others have been through that particular experience possibly for far worse.

sidenote -- Thanks for letting me know Pugsy

[Pugsy]

Sorry about that....brain fart.

For a machine....check out secondwindcpap.com.
They will ship to Canada...compare their prices to your local supplier.

Do look at the ResMed AirSense 10 AutoSet or the for Her AutoSet. I know a little more money than the DreamStation but there are some features on the ResMed that might be of benefit for you. It's bit quieter for one thing and the exhale relief is a little better especially if you are going to end up needing higher pressures.

[Jas_williams]

This is a great machine to buy privately

viewtopic.php?p=1330721#p1330335

[TropicalDiver]

No need to buy the sanitizer. That will save you $300. Buying used will also save a bunch.

Yes, buy filters along with a spare hose, humidifier tank, and some mask cushions. I personally would buy used if it is out of pocket and would target the ResMed autoset, autoset for her, or vauto. All great machines.

Not familiar with the ways of Quebec health care -- but you can always read your own data with an SD card...and show it to and doc.

[Geer1]

AB is the same way. Doctor says lets test it, sends a req to 3rd party company they do test and then try to sell you equipment. They didn't charge for test or any of the appointments but I know the price of equipment will be higher to offset this. When getting my report they would only give me the front summary sheet and not the second sheet with doctor recommendation to try CPAP, I believe so that I couldn't go elsewhere for equipment since you need a prescription. They forward results to the doctor that ordered the test so I just asked him for a copy. I think most of the at home sleep study places are set up with the same business model across most of the provinces, I had heard ON is different and though and equipment is cheaper. You could try going elsewhere but I would ask them about price before doing any more tests etc, I imagine they will be about the same.

I wish they would just charge regular price for the equipment and charge for the sleep study etc separately as it would be more upfront that way. I know they are offering more then just the equipment though so a guy can't really compare price to the online outlet stores though. Thankfully I have insurance that will cover mine so I'm willing to pay them the extra for the work they have done.

I also have neurological/nerve related symptoms. Not sure if they are from the OSA or not. One of the most common causes of peripheral neuropathy is diabetes so those might be unrelated and tied together. A PSG will not tell you anything about nerve damage scale(to my knowledge), an EMG/Nerve Conduction Study performed by an neurologist might though.

[J-P]

Thanks guys - Good responses all around. I'm going to mull over the machine choices, but I see a general preference here for the ResMed machines. I may have to stick with Philips for the lab requirements, but I will investigate.

TropicalDiver - You don't need the sanitization machine? I'll look into that, I thought it was a requirement.

Geer1 - Thank you for the corroboration - It's exactly the same in QC. The 3rd party referred by my doc is doing exactly that - to be honest the whole setup seems like a franchise, and I wouldn't be surprised if it's almost an identical process across Canada. They don't charge for the diagnostics (which is just a take-home-test anyway) or the titration. As soon as getting a doctor is involved they want money, as that referral is costed into the price of the machine and paid for by insurance (hence the price hike). I've requested a meeting with the pneumologist (Pulmonologist) separately which I'm okay paying for myself.

Luckily I have access to friends who work at the local General Hospital (my in-law is a GP there, he's the one that referred me to the private clinic directly - otherwise on the public health system I'm still waiting for them to call me to set that up lol). One physician friend who I talked to advised that I go ahead and purchase the machine and requested that I give him a copy of my data, he will then pass it to the inhalotherapist at the hospital lab and see if I can get it onto the third party lab via a back-door method (i.e; they refer me from the pubic system into the private lab with my 'privately purchased' machine). A long and slightly unorthodox way around, but I'm willing to try it.

Luckily my doc sent me copies of all the test data along with the advisory sheet (with the recommendation of the physician for setting auto-CPAP minimum/maximum settings). So I can set the machine up myself and pull data off every night.

I wanted a PSG to look more at what kind of OSA I have with a more detailed analysis of data (with EEG rig), it seems a bit rough and ready to just supply CPAP based on an 'Alice' test done in a single sitting. So yes, you are correct. A referral to a neurologist and EMG/nerve conduction tests will be what I should be pushing for as I have a diabetes checkup coming up soon (my first 3 months, so they'll check my A1C etc.) - Any opportunity with the doc to push. I'm on a waiting list for a 'family doctor', but as I'm a recent migrant here, I'm having to rely on walk-in clinics atm which is kinda rough.

[Geer1]

A PSG isn’t going to tell you that much more and I wouldn’t sit around waiting trying to get one when it is almost certainly going to say the same thing, try CPAP.

Where PSG would be more helpful is in determining other sleep issues such as arousals due to periodic limb movement and get an idea of your sleep stages(which is going to be fractured anyways due to OSA.

The home study should have differentiated between OSA and CSA so good chance the recommendation for APAP is good.

Did the sleep place offer a trial, if not ask them about it. My place tried to sell me stuff off the bat but are supposed to offer a trial. In my case was $250 for a month which comes off equipment price at time of purchase. That would be a good way to try cpap if you aren’t quite sure about results(mine was almost all hypopnea and more central apnea then obstructive apnea so I wasn’t sure and did trial.

[Julie]

Sanitization is a scam put on by SoClean, Bill Shatner and who knows what else... they are in court now fighting to stay in business, tho' obviously have a contract to show the endless ads.

There has been lots and lots of input here but the upshot is that there is nothing to 'sanitize' in your machine (a wipe down of the outside is all that's ever needed for it and routine filter changes), the hoses don't need cleaning or anything else at any time and your mask can usually get by with e.g. Dawn and warm water with baby wipes in between those. Do NOT get taken by that nonsense... big waste of time.

[Abbey sleeps]

In Ontario the Testing is paid for by OHIP, but otherwise the racket is similar to what you describe. After my first experience with one of the DMEs I called around and “interviewed” places to see how they would proceed and got a different loaner machine (I had wanted to try the Resmed machine). The new place was much more helpful in terms of opening times, support with isssues and mask fitting.

In the end I bought a machine from sleepeh.ca, which I think is in Montreal, at one of their sales. They carry only a limited number of items, but they are well priced. In the end I paid around $550 for a brand-new AirSense 10. There are a number of good online places in Ontario as well with good sales you might want to check out. Let me know if you’d like recommendations.

[Cruiser1234]

In the end I bought a machine from sleepeh.ca, which I think is in Montreal, at one of their sales. They carry only a limited number of items, but they are well priced. In the end I paid around $550 for a brand-new AirSense 10. There are a number of good online places in Ontario as well with good sales you might want to check out. Let me know if you’d like recommendations.

Also, call places. Resmed has instituted Minimum Internet Retail Pricing (MIRP) in Canada - so they can only advertise a minimum price set by Resmed. They may give you a better price if you call - but no one has confirmed if they have been able to get a better price by calling. Certainly, everything is locked in online at the prices that Resmed set.

[Cpapian]

Two online resources I use are:

Cpapmachines.ca (Ontario)
sleepyeti.com (Alberta)

Both have good prices, packages and both offer sales, usually on holidays. Probably will offer a black friday sale.

Ontario has established the maximum prices for machines .... $860 for CPAP and $1,020 for APAP, with one oddity, the ResMed "for her" version is classified as CPAP so it's $860 instead of $1,020 (good deal). this has basically set the standard price for reputable XPAP suppliers. By the way, the Ontario prices should include a mask, hose, etc but basic ones. Even Shoppers Drug Mart Home Health Care sells at those prices. Don't know if you would get optimum points on XPAP (being Rx).

the 2k prices are pretty much standard prices for Quebec.

Just buy the basic elements (machine, mask, hose and filter) at the beginning. Anything like SoClean is extra and you can decide later if you feel like spending more money. When you are new at this, there is an eagerness to do things right, which is what pushes new users to cough up the dough for the SoClean. Once you get past that, I doubt you would want it.

It's great that you are going ahead with this. I liked the first mask they gave me and I still use it amongst others. So if you liked the mask from you study, go ahead and choose that one.

[Marko2019]

Hot off the press:

As I said, yying to the public is one thing - lying to a circuit court judge is something entirely different.

https://www.courtlistener.com/recap/go ... 4.51.0.pdf

[Dog Slobber]

Hot off the press:

As I said, yying to the public is one thing - lying to a circuit court judge is something entirely different.

https://www.courtlistener.com/recap/go ... 4.51.0.pdf

This should probably be posted in the SoClean lawsuit topic.

[D.H.]

If the cost is an object, you can order a used CPAP from the site below. To the best of my knowledge, they inspect and sterilize all units before shipping. I suggest that you get an "automatic," as I find this best. They definitely ship internationally, so that's not an issue.


Link ===> https://www.secondwindcpap.com/

[chunkyfrog]

Auto machines can be run on regular cpap mode as well as auto modes.
SOME people are more comfortable with straight cpap,
but some dealers will use this as an excuse to sell a slightly cheaper machine,
even though an auto can be used in either mode.
This parallels mattress selection--choose wisely, or pay dearly.