Complete Newbie... Kind of Overwhelmed

[marilynmalloy]

First of, I will make it clear. It's my husband who has Obstructive Sleep Apnea, and needs CPAP. Not me. However, he's not one to ask for help, and leaves all medical to me... and I'm well overwhelmed

Yesterday picked up the 'trial' device. And basically we both felt... used.

He HAD a heart attack in 2014. Also type 2 diabetes, insulin dependent. Thyroid issues. And a couple other small things.

I know they can play a roll. (we've been told to watch glucose levels and blood pressure as CPAP can cause lowering of BOTH which could be problematic if undetected).

Okay. so First question... how long do these things last? We have been quoted for 1980$ (Ontario, Canada). Government will pay 645$. Private insurance will pick up the rest. Private insurance caps out at that point.
We've been told our choices are Dreamstation HT, or Airsense 10Elite.
(or lower models).
He needs the C Flex Plus feature however - and most lower models don't have that.

For the 1980 we get filters, and maintance for 5 years. As well as a extra heated tube. Any mask he wants the store carries and 1 extra seal. Warranty for 5 years.
Here, we would like the 5 years, because the gov't and private insurance only dish out 1ce every 5 years. So it'd be nice not to have to worry.

He is on a DreamStation System 1 right now, for the trial. But hates the mask. At the hospital they has a AirFit F10 - he liked. The store stated no and gave him an Amara View (he can't stand) And a Simplus. ... which he's kind of tolerating. Kind of.
Should I be pushing for the company to supply the AirFit?? or is there another?
NAsal only is out of the question as he gets congested on them (tried, failed).

Is there a full face mask designed for people with no teeth?

After 1 night with him at home with it. He feels amazing. And i'm glad. Me.. not so much. He used to snore. Loudly, as in neighbors have called in noise complaints loud. Now he doesn't. Just the machine going in and out. Great. Except, now he actually sleeps. As in REM sleep, etc. and dreams. And doesn't let anyone else sleep. Talks, dreams, carries on. Hops out of bed (even after sleep lab times) and is wide awake and everyone near him is... exhausted.

For anyone on here that is a spouse... does that... adjust?

Don't get me wrong, I am happy he feels so much better. He deserves to feel amazing. But how to the spouses cope?

And of course, I'm curious about how long these things last. I asked about cleaning when we picked up the demo, and I was told no cleaning needed. (Can't be serious, the man has COPD, etc... must need cleaning)....

Looking forward to getting him help with this (and hopefully sleeping again one day myself).

Cheers!

[Crimson Nape]

Hi marilynmalloy!



I'm going to attempt to answer what I can but some of your questions would be better answered by someone more familiar with the rules used in Canada.

The Amara is a Philips Respironics mask. The same company that makes the Dreamstation. The F10 is a Resmed mask. Resmed also makes the Airsense 10. You mentioned the C-Flex; That is a option only on the Philips Respironics machines. Resmed will call it a different name.

You mentioned that your husband has COPD. My understanding is that most people with this condition use a BiPAP or Bi-Level (again, each maker has their own terminology for the same thing.) In this case it would be a Resmed Aircurve 10 or a Philips Respironics Dreamstation BiPAP. The difference between these machines and a CPAP is: they are a CPAP with extra Oomph. They can provide higher pressures, the ability to allow for larger pressure differences between inhale and exhale pressures, and are more expensive. Please note: This is just a quick explanation.

Since you are in a city the size of Ontario, there should be more than one DME that you could use for your CPAP, masks and accessories. One should have the Resmed F10.

By the way, the hose diameter connection is a standard size for ALL masks. This means that any brand mask will work with your CPAP model, regardless of manufacturer.

All CPAPs need to be cleaned. . . Nothing major, just a gentle washing of the mask, humidifier tank(if used), and maybe the hose every-so-often. Use something like dish soap or shampoo with water no hotter than you can comfortably touch. Some parts are made with low temp plastic and don't do well in hot water.

As far as anything else I can advise; Masks seem to preform better with a fresh washed and clean shaven face.

I'm going to leave your other questions for someone else.

Good luck to you and your hubby.

[Sleeprider]

I think insurance will cost you more than simply paying for a device and getting it mailed from a U.S. supplier. Supplier #2 on our supplier list link at the top of the forum offers open box specials and other new machines at a significant discount, and less hassle than your provincial insurance. I think you would be much better served by auto CPAP, either a Philips Respironics System One 60 Series Auto, Dreamstation Auto, Resmed S9 Auto or Resmed Airsense 10 Autoset. By using an auto machine, you get full data and a machine that will quickly titrate to meet your husband's needs. Of all those options, the fastest results would probably be with athe Airsense 10 autoset. You can request provider manuals to learn how to setup the machine, and we can help you to do that on the forum. You will however need a prescription.

With regard to the mask, you can get any mask you want on the open market; just do a search. I have no idea what is going on in Ontario that the suppliers can jerk you around like that. It seems that if you can just buy what you want, and get your husband comfortable and compliant, the added life quality more than compensates for the added expense. Resmed Airfit F10 masks are certainly not rare, nor unavailable in Canada.

[chill]

Yesterday picked up the 'trial' device. And basically we both felt... used.

I am in BC and pretty happy with my supplier. They are not cheap but the service is good and I look forward to seeing them. I'd switch before I felt used.

Okay. so First question... how long do these things last?

The machine will last 5-8 years, maybe more. Masks, maybe a year or two for the plastic frame. 6-9 months for the fabric part. 1-6 months or so for the pad part you breathe into (highly variable, depending on mask)

We have been quoted for 1980$ (Ontario, Canada). Government will pay 645$. Private insurance will pick up the rest. Private insurance caps out at that point.

That may or may not be a lot, depending on what is included.

We've been told our choices are Dreamstation HT, or Airsense 10Elite (or lower models). He needs the C Flex Plus feature however - and most lower models don't have that.

That is where I would be wanting to hit someone. Do not accept either of those machines. Say NO! I am not sure what the DreamStation HT is, but the AirSense Elite is anything but Elite. You want a data capable machine so that you can take charge of your husband's therapy (and hope he takes over as his energy and clarify of mind returns.). You should get a Resmed AirSense 10 AutoSet or Phillips DreamStation AutoPAP. One generation back is the Resmed S9 AutoSet and the Phillips Respironcs System 60 REMstat Auto. A data capable machine a generation back is far preferable to a current machine that is a brick.

For the 1980 we get filters, and maintance for 5 years. As well as a extra heated tube. Any mask he wants the store carries and 1 extra seal. Warranty for 5 years. Here, we would like the 5 years, because the gov't and private insurance only dish out 1ce every 5 years. So it'd be nice not to have to worry.

Is that filters for 5 years? Or just enough for the first few months? If the machine does not break down, there is nothing to maintain so ignore the maintenance. An extra heated tube is $50. A mask is $150-$250 at most. One extra seal?!!? What will he do for the next four years? I'd check that warranty really carefully. The manufactures give one or two years. In my opinion, if it has not run into problems in the first year or two, it is very unlikely to in the next few years. After which you can get a new machine.

That is a bit less than I paid for a data capable machine, heated type, good mask, and checkups every six months. But I have great insurance and did not pay a penny. Unless you are getting good service, I would look elsewhere. Google "Canada CPAP" and you can find lots of on-line suppliers. Ordering from the US is cheaper, but most places won't ship Resmed or Philips products to Canada (so I have heard). I know one that will, but we can't include commercial links here.

Also check and see if your insurance and the govt insurance has a separate category for "CPAP Supplies". That covers hoses, masks, filters, seals, etc. My insurance has a separate account for that.

He is on a DreamStation System 1 right now, for the trial.

The System 1 is the series before DreamStation.

But hates the mask. At the hospital they has a AirFit F10 - he liked. The store stated no and gave him an Amara View (he can't stand) And a Simplus. ... which he's kind of tolerating. Kind of. Should I be pushing for the company to supply the AirFit??

I like the Simplus myself. But getting the right mask is the big challenge in this therapy so you should push as hard as you need to get the right one. If he likes it, he is more likely to keep using it. Accept no substitutes. Any company that can't supply an AirFit F10 is not one that I would want to deal with.

Nasal only is out of the question as he gets congested on them (tried, failed). Is there a full face mask designed for people with no teeth?

I would not rule a nasal mask or nasal pillows out so quickly. Congestion sounds like the machine's humidifier was set incorrectly. Too much or too little (depends on the person) can quickly cause congestion. With no teeth, he might find that a nasal option provides a lot less leakage. They also tend to be more comfortable. A decent supplier would help you with this.

After 1 night with him at home with it. He feels amazing.

That is great... for him. Many take a lot longer to find any relief.

Me.. not so much. He used to snore. Loudly, as in neighbors have called in noise complaints loud. Now he doesn't. Just the machine going in and out. Great. Except, now he actually sleeps. As in REM sleep, etc. and dreams. And doesn't let anyone else sleep. Talks, dreams, carries on. Hops out of bed (even after sleep lab times) and is wide awake and everyone near him is... exhausted.

Well, this is a process. It is not like flipping a switch. So don't get too upset too soon. He should settle down, but it might take a few weeks. Or months. Do you have a spare bedroom that you can sleep in while he recovers and learns to sleep normally? My wife only complains about the exhaust from the mask. Well, no, she complains about quite a number of things but the rest are not CPAP related.

I asked about cleaning when we picked up the demo, and I was told no cleaning needed. (Can't be serious, the man has COPD, etc... must need cleaning)....

I will leave the man cleaning schedule to you. I have no advice on that. As long as you are using distilled water in the humidifier, there should not be much to clean. The important thing is to wash the mask seal daily to remove facial oils. This helps it to seal better. Make him wash his face before bed too. OK, OK, a little advice on the man cleaning schedule. The rest, I wash on a "sometimes" schedule with dish soap or baby shampoo.

[marilynmalloy]

I have briefly browsed, both out of province, and out of country (US and UK). But the issue with doing the initial machine that way is
1. Money. To do with in Ontario, we will have the entire initial purchase covered... and some of the additional mask/hose we'll need over the 5 years.(Up to 2500$ between government program, and private insurance).
2. Compliance issues. Here, if he is deemed to 'not comply' with treatment, he can loose his Drivers License. To comply we have to go to all follow up appointments, with both the Sleep Clinic/doctor, as well as the Sleep Technologist (who does the CPAP), and be willing to let them take regular compliance readings from the machine.

The masks we will get what makes him comfortable once his trial is over. I was shocked with the treatment from the sleep technologist. Her bedside manner would be better served in a morgue. But that's another issue altogether.

Friday he sees the Sleep Doctor again. I can't make it to that appointment, but I will have him pushed to have the machine switched to Auto PAP - it does seem like a better solution from what I've read. The Auto PAP does seem to cost more money, but there is also more insurance coverage on those devices.

As for the 5 years. Yes the filters are included for the 5 years. 2 hoses are included in those 5 years. 1 mask. 1 extra seal. Maintenance has to be done yearly. Again, it's a compliance thing. Do the maintenance and it breaks anyways - you qualify for government assistance for another. Don't do the maintenance... and you're out of luck for assistance . - and if you don't have the machine, you're not in compliance.

I am sure they don't do anything special for the maintenance, but it is what it is. (Personally I think they use it to check compliance). We are using distilled water.

I did check insurance the Resmed AirSense 10 AutoSet is covered, so that is what I will ask the prescription before. It appears to be more money, but we will figure that out regardless.

Thanks,
This is so new.

On an update on sleep - he turned it off partway through the night, but that's his issue. I took a sleeping pill and was sound asleep, so it didn't bother me one bit. LOL

[Sleeprider]

Good luck with the treatment and equipment. It does seem a lot more invasive and complicated in Ontario. One thing to keep in mind is that COPD can complicate therapy with changing pressure needs and an auto-CPAP may be a good idea from that perspective. Ontario seems to take a one-size-fits-all approach to CPAP, and it is very difficult to get consideration for a specialty machine. The Airsense 10 Autoset would be an ideal solution for now, and a pretty significant upgrade over the Elite. I would not touch the Respironics HT, which I think is the basic Dreamstation CPAP. It does not produce any efficacy data, so you will not know how well or poorly it is working to resolve problems other than how he feels and the sound of snores.

Good luck, and stay close so we know how things work out.

[chill]

Correction: I referred to the Resmed Elite as a brick. That is incorrect (Thanks DB). The Escape is what I was thinking of. Elite is a data capable CPAP.

The only HT I can find a reference for with Respironics is Humid/HT for the humidified. It is probably the DreamStation CPAP with Humid/HT they are wanting to give you.

Look on the bright side: there is no govt coverage at all in British Columbia but you are covered for serious follow-on health conditions. The logic of this escapes me but CPAP is not alone in this.

[trish6hundred]

Hi marilynmalloy,WELCOME! to the forum.!
I hope your husband does well with his CPAP therapy and that you can get some sleep, (Ha-Ha.)
Hang in there for more responses to your post and good luck to you both.

[eseedhouse]

Look on the bright side: there is no govt coverage at all in British Columbia but you are covered for serious follow-on health conditions. The logic of this escapes me but CPAP is not alone in this.

"Logic" doesn't seem to mean much to the present government. To be fair they pay the shot for the hospital sleep study. Then having found you to have apnea that needs treatment you are on your own. Good thing I worked with a union shop that got me a decent health plan in my retirement. Too bad not everybody has that.