Canadian CPAP Question

[rtsteve]

RT Steve here. I wanted to compare how a CPAP trial went in your part of the woods. I know in Ontairio there are more sleep labs than in other parts of Canada and other provinces do alot more home testing, some even simple oximetry's with symtoms... ( BC for one). But not only the diagnosis part but how the trial went.. mask fittings and follow up testing after CPAP . Just curious as to how we compare in our service and protocol to others around the country.. If you want to share please do so .. thanks steve.

[BlackSpinner]

Quebec here!

I went for a sleep study in the Verdun hospital (Booked it in September for December). I was given a group of things to take home and trained in how to wear it along with a detailed instruction sheet. I brought it back in the morning.
Due to my confusion as to who to make an appointment with I saw the pulmonologist in April. He prescribed the cpap (pressure 7) and handed me a sheet with suppliers on it. I picked the one closest to home Vitalaire in Alexis Neon. I had a 20 minute appointment in which she showed me the machine and how it went together and tried 2 masks on. The quatro I got is the small but it didn't quite fit but that was all the full face masks they had in stock so suck it up. Most of the time was spent filling out forms and dealing with the payments. I have never been contacted by them. I went back once about my eyes and was told that the mask didn't leak (she could see that from across the desk when I held it up to my face) and there was no possible connection between eyes and nasal passages. With her attitude I am surprised she didn't refer me for psychiatric counselling.

In August I had a take home titration ( their machine and my mask) and saw the pulmomologist again and was told to bump my level to 9.

Here you have to use the machine for a month (at 7) before they do a titration. These are studies done through Quebec medicare at the hospitals. There are private sleep labs for those who have work insurance.

ETA: I don't have insurance and the whole thing cost me $2000 - there was no option about payment - cash/card up front, no trial period nothing offered.

[cobra4x4]

Victoria, BC here

1st had an at home 24hr oximetery monitor, had to wait 3 weeks for results which came back inconclusive. My GP sent the results to a respirologist who then 4 weeks later ordered a sleep study at a local hospital. The sleep study ended up being a split night study since they found out I had OSA after only a couple of hours. The sleep study started at 9pm (In bed sleeping at 10pm) and being awakened at 6am.

The respirologist got the results in 4 weeks and found I had severe OSA, he prescribed a 1 month trial (cpap with humidifier @ 7cm) which is not covered by medical neither is medical equipment. I was given a sheet of paper with a list of DMEs and a preferred one (cheapest costs). A month long trial would cost anywhere from $150 TO $500 depending on the DME, yes that money goes toward the purchase of the equipment after the trial, but you don't get it back unless you purchase from that DME. To see a DME here you need to schedule an appointment which for me involves taking yet another day off work and any subsequent visits to the DME would also require me to take days off from work which I can't readily afford to do either.

As I'm not in a position to afford a lot and don't have extended health benefits, I found the month long trial would be a waste of time since I could not afford the $2000+ for the equipment to keep going with the therapy. I took the resulting info and started researching online about OSA and found a couple of great forums, I got well informed over a few days/weeks and found a machine online with nasal pillow mask well within my budget ( a couple of hundred dollars), The machine was from 2007 but was virtually new in box, The machine had a total of .2 hrs of blower use. The fellow I got it from included all his documentation and as I read it, it said he needed a pressure of 8 yet the machine was setup incorrectly at 13cm... no wonder he couldn't wear a mask in a hurricane as he put it. He had put it away in a closet and forgot about it until recently and since he wasn't going to ever sleep with a mask on decided to sell it.

I got the clinicians manual for the machine and adjusted the pressure setting for 7cm (my pressure) and had to purchase a new large pillow ($48 from local DME) for the swift II mask. I used a cold sterilizing solution to clean everything and since then been on cpap therapy and doing great with 100% compliance with an average of 8.2 hrs of use daily over the past 53 days. About 10 days ago I bought a new Swift FX mask again online from someone in Vancouver and its a great mask, works very very well for me since I'm a side sleeper. I started cpap therapy on March 5/10, I have a followup with my respirologist this afternoon so I'll see what he has to say.

[nanwilson]

Southern Alberta here
I was referred by my GP in July /09 and had my lung function test in November, overnight sleep test in February, results 6 weeks later. Had a loaner (Resmed) for two weeks and now have my own machine and ffm. I have been reading this formun for about a month and have learned alot. Alberta does not pay for cpap equipment, so had to foot the bill on my own (I'm a 67 year old widow with little resources). The clinic staff were very good, they allowed me to pay once a month with no interest!!
Nan

[Froro]

Hi RT STeve

My experience from referral through to titration was excellent. I was booked into a clinic just a few days after the referral. I had a full night of testing with no titration. I got home and received a phone call within hours telling me to come back immediately for a titration study.

It was the two-three week wait between the titration and seeing the sleep doc that was the hardest for me. By that time I'd come to terms with it all and just wanted my machine. Sleep doc spent all of five minutes with me and sent me on my way to a DME a few days later.

DME......I knew what I wanted machine wise so that was fine. No mask fitting, machine wasn't even turned on. They showed me how to clean it and sent me on my way. That's it. I had issues with the noise from the machine (it wasn't normal). Brought it in...they told me I was lucky I didn't have the older version and it was normal. I knew after asking here and elsewhere that the noise coming from my machine was not normal. Brought it in again. The tech proceeded to tighten my mask so tight it hurt and said all was normal. I informed her that the mask was to fit loosely not strangle me and she waved me off.

At that point I gave up, came home and contacted Resmed directly. Told them the issue I was having, what I had tried to resolve it etc. They contacted my DME and told them to give me a new machine. When I got back there they said...well...it's better you contacted them anyway because they give us a hard time. Really? I had a bugger of a time finding the number and finally found a random email to send to.

My machine was replaced and I've not had a repeat of the loud ear piercing squeal that was eminating through my first one.

[cobra4x4]

I keep editing my post above to add more info as it comes to me.

[rosacer]

I went to a Dr specialized on OSA but not a pneumoligist, very knowledgeable. She refers me for a sleep study in a private clinic. I had no insurances. I went to have an appointment at hospital but they don't take patients from Drs not working at hospital and not pneumologists.

I get a pneumologist (6 months waiting), he send me to split study (4 months waiting). I get a sleep night study at hospital but I started having apneas too late to have the titration. I went out of the test without titration and I never had one after that.

I managed to buy my first machine in Ontario (used machine) and to set it with the help I have had here in the forum. The pressure asked by the Dr was 7 and for him it was excellent. I see the Dr after one month on cpap I say I'm tired and but he don't send me to titration he says everything is good. I'm very disappointed.

After the second month feeling still tired I start changing pressure and trying to find the good one. I discover I'm at least closed to 8.6 or 9; with a cpap it's not easy to find the 90% pressure. I discover too, that my pressure varies a lot from night to night and while traveling (differenet bed?). All that using the data and how I feel.

I decide to try to buy an auto machine, I do and I discover my 90% is 10. I start waking up rested.

I go to see the Dr for the third time ( 3 times at 5 minutes each time ). The Dr didn't appreciate I changed my pressure, I told him his famous 7 was no good. He opens the report in the middle of the 12 pages randomly and says your pressure is 9; wrong again my 90% is 10.

I go out of his desk with a prescription, which I asked for an auto cpap, he has the courage to set it at 4 -20 what a joke. I ask for a mask, he adds a "Face Mask" had you ever hear about face masks? Never titrated, never explained about nothing (I have OSA plus a respiratory deficiency, I need to find a Dr who will explain to me what it is and how serious) and all that from the specialist required by the hospital to get my sleep study. I'm sure I would be better with the first Dr who was refused by the hospital.

At the sleep test the technician acted as an OSA patient without treatment. He was all the time seeking for something he had forgotten where he had put it. At the end of the test he discovered he had forgotten to attach one of the wires to my collar bones, then he said Oh it detached! false he never glue that one I remember clearly.

OK, my case is a special one, not all the patients here in Quebec have the same odyssey. Some goes to the hospital and others to private clinics. At hospital it's a waiting list of 6 month to first see the pneumologist and after that there is another 4 to 6 months in some hospital to have the split test. I think they should send you first to home test before going to hospital split test.

Here government lend a plain cpap machine (it could be of all kinds even no data) and a good mask, to the ones who are on welfare, the ones who have no insurances and a critical financial situation (I don't know the criteria for that) an to the ones who have no insurances plus another respiratory deficiency. You need to wait for it 5 or more months on a waiting list. Once you have the machine you can't take the machine out from Quebec for travel. You need to use it a minimum of 4 hours a day and almost all the days and you CAN'T change the setting your lovely Dr prescribes.

This is my case. Now I'm expecting to change Dr, I don't want to see this pneumologist any more, I had enough. I started treatment last December.

[Nord]

Hi Steve...

Ontario - Greater Toronto Area

During late 2007 my sleep deprivation seemed worse. I had my GP send me to a sleep specialist. Short interview meeting/ no physical/ scheduled Sleep Study locally at private clinic.
Attended SS in Feb 2008 for about 7 hrs. Friendly helpful techs. No advance info on what to expect. Small, clean, uncomfortable room. Not much sleep and mostly supine.

Specialist office called and had interview. Mostly lecture/ interview and informed Severe OSA with AHI = 41. Asked about alternatives... only recommended CPAP and I was told about low Oxygen levels. The Specialist used mostly "scare tactics" about the need. I did not know anything about OSA or oxygen desats. No report was offered and none was requested.
I wrote him off as a little hyper and saw my GP about my insomnia/ frequent awakenings. My GP offered that the Specialist was "different".

Nothing was getting better during 2008 so back to the GP about ongoing hypertension. Asked about different Specialist than last time. Appointment and short interview with new one. Scheduled SS at same private clinic my first... but because of my history, this was a Split Study. I still didn't know much more about OSA and oxygen desats.

Same small room, clean, uncomfortable, friendly techs. Slept very little but some and none supine. They strapped on mask and straight CPAP. I thought OMG it felt like trying to breath during a hurricane while being outside. I did sleep some while gagging on the pressure. At the end, a tech offered some technical info about my Data... which I didn't completely understand. I was told the Specialist would call after the report was ready.

Waited 2 months and then I called the Specialist and made appt. He cancelled 2 days before and I made another appt. He called 2 hrs before this one and cancelled again. I called and said I will meet him at hospital clinic (not sleep) Secretary would fax my report to him. At this point I had done some reading and understood a reasonable amount. I met with him behind a curtain and asked some questions. He did not provide many answers. I asked for CPAP script which he handed to me at 6.0 cm and said goodbye.

I phoned Specialist Office who said, they don't follow up until you get the CPAP. Asked for DME's for CPAP which she gave me 2 off her memory.

Saw my GP where he told me about some bad reports he had been getting after referrals to that Specialist. I asked for and got copy of my original SS summary page and the full second SS report. The 2 reports are quite different but I decided I had to be "in charge" of my own therapy and get knowledgeable quickly. AHI went from 41 to 13 ??? Severe to Moderate ???
Pulled out the phone book. Phoned 4 local DME's and decided to go in and sit down with them. First was all sales oriented by part-time sales guy (the sales book had rhinestone, zircon, diamond, platinum levels etc) and very expensive prices.

Second was more professional and More Expensive RT/ Sales guy. He wanted me to try out a rental M Series C flex Plus and set me up with used Swift LT... He spent about 35 minutes on instruction/ fitting and I went away.

My first days were filled with rainout, ramp set at 4.0 cm and pressure 6.0 with c flex and trying to get used to wearing mask. Every time I slept I wore the mask... 100% compliant but between leaks, pillows collapsing, constant rainout and struggling to breath at 4.0 cm. It was not fun. I phoned twice during 2 weeks for support about wrong size/ collapsing pillows/ rainout conditions.
Over the phone, instruction about humidity changes but wanted me to persevere with mask.
After 2 weeks I drove to his office and handed him the "old" pillows. He went to his drawer and pulled out a large and med pillows in zip locks and handed them to me. They were better but his reluctance and approach made me look for another DME and I said goodbye forever.

I had already decided that Medical Supply was all about profit so I called and talked with another 8 - 10 DME's. I narrowed down to 3 that I liked based on their helpful approach/ professional attitude/ knowledge/ competitive pricing and decided on the best choice. It was also about having up to date CPAP machines and masks to choose from. If they biased completely toward 1 manufacturer more than another they were discarded. About the same time the S9 was announced by ResMed and I was reading everything I could about machines. I decided to wait until the S9 was available before making a decision about machines.

I decided that to protect myself, I had to know as much about OSA, CPAP machines, Masks as the RT's did. So I read everything and visited Online Dealers, watched Videos and read Forums. I made my best choice about DME's and called. My choice was a registered Nurse who works full time as CPAP Clinician for a major Home Health Care. She set up a home consultation and brought an S9 with her and 4 different masks that we had discussed. I liked her professional/ knowledgeable approach right away. As a long time Nurse, she also had a caring attitude that was obvious and as well as experience with selling CPAP... her husband has severe OSA at 20 cm. The DME had great policies, reasonable pricing, all products and very accessible RN as the contact person. I liked everything about it.

I purchased the S9 from her that morning and she prepared all the government paperwork and she left the machine with me. I have in the past 2 months been in contact with her several times a week while trying some other mask purchases. It is higher prices than Online but a reasonable amount more and with Great... let me repeat... Great... Service.

I like competitive pricing and do shop Online but service is something that costs the supplier when it is delivered... and it is something that I am willing to pay for if the service is "good". Many suppliers talk about their service level w/o ever delivering the actual service. They just want the higher profit margins... not the added cost. I'm not sure that they really understand the concept of great service or what it involves. People that usually deliver great service do so because they couldn't do it any other way.

I have not looked back... I am happy with my choices (DME, S9, etc) because they were "MY informed" choices.
I am still looking for a new Sleep Dr and Sleep Clinic who are knowledgeable and up to date.
Now that I know more, I have a right to expect more from them... and... I am in charge of and responsible for my own health care.

I think I may have gone further than you really needed...

Nord

[silver123]

My MD referred me to a pulmonary doc.I t took about 2 months to get in. Did the initial study at home with oximeter, hooking myself up. Titration was the same. Went to VitalAire. My doc had stipulated an APAP with Aflex, thank heaven, and a nasal mask. I ended up telling the tech exactly what I wanted in both machine and mask. I had insurance at the time so that helped. The product were way, way over priced. She tried to keep the extra pillows on the nasal mask. I demanded them. Mask fitting? not hardly. One follow visit where I brought in my card, did not tell her I had a reader. She made no comment on the results.

I've never heard from them again.No follow up. I learned that they had given me an older humidifier. I called their main office and complained. They were forced to exchange it. I don't think they appreciate people that give a damn about their therapy and expect the same from their provider. CPAP is a cash cow for these companies and they obviously don't particularly care about the success of their patients.

I've been back to my doc. He was pleased that I brought him printouts and respected my ability to explain very clearly why I changed my pressure based on that data.

I get everything online either from cpap.com or the auction site and swap pillows whenever possible.

[diboja]

Winnipeg here...

My GP arranged for a overnight sleep study at Misercordia Hospital Sleep Disorder Clinic where the main testing facility is.....
Took 7 months to get in
After having the sleep study I was provided with a test machine for one month about 4 weeks later....which had a smart card which confirmed my required pressure. Also had a meeting with the primary sleep doc who went over the results and what to expect.

Had the loaner for about a month and then I was referred to RANA who is the equipment provider for the Province.
They were just super - received all of my equipment and a M series Plus with C flex unit (basic), filters, mask (which they fitted up for me), hose and humidifier. These are supplied no charge in Manitoba and if you wish to have an upgraded machine with a "smart card" you have to pay for it.
Units are replaced every 5 years and annually they supply a mask, hose and filters......plus they will repair/replace equipment no charge if you encounter problems.

I took the freebee and am satisfied but I will be purchasing a M series PRO so that I can check on my progress.

Overall - a good experience with qualified people.

[cobra4x4]

Update ...

I saw my respirologist today for a followup, He was ecstatic that I was so knowledgable about my therapy. I explained to him about not doing the month long trial for financial reasons to which he said he's heard that many times. When I told him that I decided to jump right in with a virtually new used machine that I got online and that I adjusted the machines pressure to the pressure he gave me as well as getting a mask and making it work perfectly his response was "great, I like it when the patient gets the help they need no matter how you got it done". I asked him about getting a new detailed prescription next year and he said no problem I just have to call his office.
He has no problem with people taking charge of their own health so long as they listen to his advice. I didn't change pressure or anything else he advised, I just went a different route to get my equipment and set it up according to his specifications.

I printed off my compliance report (53 days so far) and he was very happy with the fact that I'm sleeping 8+ hrs.

I no longer need to see him ... at least for now.

I got a copy of my sleep report which shows AHI=70 and oxygen levels dropping to 88% on my back and 96% on my side. I slept 7 hrs on my side and only 30 mins on my back during the study.

[rtsteve]

Wow. One day and so many great detailed responses(nord) just kidding nord that was a great history, the rinstone cowboy was the best( cpap sales guy)... I knew there was a difference in care and testing but it still amazes me the lack of standards in the canadian system and levels of care provided by the varied dme or cpap providers. In BC access to sleep labs is limited so we do alot of take home exams most common are simple oximetries So we get referrals 2 ways. One route is from the 3 or 4 sleep labs that service the 2.5 mil people in the greater van area.. the wait times are about 6-9 months for the average joe.. you can get in if your gp puts in a urgent request.. the other route isn't diagnostic but with signs and symptoms it works fairly well. We have 4 offices around vancouver(try to be close to patients so they can do follow up easier). We have about 25 oxmimeters , i manage the north van office we have 6. they are all out every day doing initial screenings or follow up titration. We also do a level 3 screening device called the apnea link which has 3 channels. oxim, heart rate and flow . If the patient has signs and symptoms and has a postive oxygen desat index we may start them on CPAP. A initial start takes about 45 min to an hour to go over the machine and try on masks. We have a 60 day trial period, first follow up is booked at 2 weeks but if mask issue's then they are urged to come in before and change masks.. then a 3 week oxim to check index level and resolution of symptoms. Another appt at 1 month , if delays then usually every week to 2 weeks for apointments. If they have insurance we do a preapproval and usually takes 4-6 weeks to hear back.. if everyting is going well and insurance is good, then we would sit down and talk about the different machine and options, If they cant get used to it or dont want to continue then they get there deposit(250.0) back . We would chat about oral appliances or positional therapy if they are motivated to do so.. The interesting point that some brought up was if they dont have insurance...our pricing is similar to most other companies for first timers since our follow up is pretty good and never any future cost for follow ups or downloads or yearly oxims( and we do see all our pt on regular intervals even after purchase)... so 1600 for basic(escape, plus) 2000 for elite or pro, and 2400 for auto.. our dilema is giving these pt's the follow up they deserve but a price they can afford.. our offices are fully staffed 1 rt and one pt coordinater(does follow up calls and appt) so overhead is higher than most. So it is a challenge, we have recently made it an option that if the newbie knows they are going to purchase a machine and fogoes the trial.. we would give them our internet price. we would still do follow up but for us it is a sale.
Just to explain not to justify the high prices , but we have about 2 or 300 loaner machines. and there is a capital cost to alot of the trial system and then the average compliance rate is about 70% . So we may put in 1 or 2 months of work and not make any income on those pt that dc treatment...the worst is a company who charges those hight prices and still does a crappy job....lots of them around.... hope i havn't been to long winded... and explained a bit how we do things. Bottom line is I love my job and it still give me goose bumps when a pt comes back after 2 weeks and says holy crap... why didn' i do this years ago? I had a lady in at the end of a long day today that was similar... Thanks for the response and if you have any more questions about the this kind of stuff let me know.. also we have a new blog site called sleep well canada .. not a live forum like cpaptalk but does have some good info that may be of interest to the canuck cpap user.. cheers.

[BlackSpinner]

Steve
The stuff I got to wear for my home test was much more then an oximeter. There were prongs that went into my nose and something that strapped around my chest that had to be in the right place. The RT's at the hospital were very good and made sure I knew exactly how to wear it - so different form DME.

The titration take home was different only because I got to wear my own mask and hose rather the the prongs, they provided the big heavy brick which tracked my breathing and pressure.

The pulmonologist was very clear and took his time to do explanations. He also encouraged me to take charge of my therapy.

Yesterday I went into Vitalaire to buy more filters. "Do you have file here?", "That will be $8.50 for two filters" (in French) end of conversation. That was the first time in 10 months that I had been there.

[rosacer]

Hi Blackspinner

So if I understand well, at Vitalaire they ask if you have a file there to sell two filters to you? Does it mean if you don't have a file (obviously because you didn't buy your machine there) they will not sell anything to you? Please correct me if I'm wrong and save me an argument in "French" with them .

Thanks

[BlackSpinner]

Hi Blackspinner

So if I understand well, at Vitalaire they ask if you have a file there to sell two filters to you? Does it mean if you don't have a file (obviously because you didn't buy your machine there) they will not sell anything to you? Please correct me if I'm wrong and save me an argument in "French" with them .

Thanks

No I think it may be just that it allowed them to print off a receipt easily. their phone is 1-866-798-5182 so you can ask to make sure.