Need advise and help picking correct CPAP

[leanintoit]

Hi everyone,

Sorry this is long but I think its all pertinent and maybe someone else will gain some wisdom from it. If you want to skip the back story then skip down to the > point about 1/2 of the way down.

I was diagnosed with AFib(Atrial Fibrillation) about 3 years ago after having a couple of very high hart rate(Tachycardia) episodes. Each of these initial episodes occurred in the middle of the night while I was sleeping and woke me up. The first one subsided quickly after getting up and I brushed it off as anxiety or a reaction to something I had eaten. The second one was persistent and left me with no doubt that something was wrong so my wife took me directly to the hospital in the middle of the night. She's my rock and the love of my life for over 30 years!

Over the past 3 years every single one of my infrequent but serious Afib with high hart rate events have occurred in the middle of the night while I was sleeping. These wake me up each time and I treat it with Flecainide as needed(pill in pocket) which usually does the trick to end the episode in a short period. Once I had to additionally use a Vagal Maneuver to end the episode as the Flecainide wasn't cutting it. Putting your face in ice water in the middle of the night is not a fun experience but it beats the heck out of dealing with an unrelenting Afib episode.

For the past 3 years I have used an Apple Watch 4 to monitor my Afib events using its ECG capability. As with most things we carry it finally met the floor in a less than ideal way which shattered its glass, it still works though. As getting it fixed seemed more than it was worth I moved on to a new Galaxy Watch 4 that works with my Samsung phone. It also has the ECG function and adds a Blood Oxygen function. After getting it all setup to record Blood Ox while sleeping I discovered about 2 months later that it was recording my Blood Oxygen going down multiple times at night into the low to mid 70's nearly every night. I say I discovered this because, Samsung apparently doesn't find it important enough to notify you about it in anyway, you have to go look for it in the Samsung Health Sleep Application to find it. So, if you don't look for it, it will never tell you that there's anything abnormal about the data it records. Keep in mind this is the same watch and application that can auto detect if your walking, running, on an elliptical, bicycling, rowing, etc... However, seriously low Blood Oxygen that it records while you're sleeping is somehow a non event...

This of course prompted me to bring it up with my fortunately already scheduled visit with my Cardiologist the next week. In discussing this with him he drops the fact that Sleep Apnea can cause, wait for it.... Afib! Like the severe Afib I have had every single time at night while sleeping and some much more mild occurrences best described as skipped heart beats or palpitations randomly during the day. All I could do was sit, listen, and shake my head all the while thinking, You Have Got to be KIDDING ME! NOW he wants to do a sleep study(my idea really), even though the signs where there 3 years ago. With that I've come to the realization that doctors are like most other trades in that some of them are really good but most of them are average at best and are just as liable to completely blow it as the rest of us. From this I've learned one thing, to deal with your health like your on your own because when you least expect it you are.

>So, this brings me back to My/Our current issue of Sleep Apnea. This illness unexpectedly has quite the learning curve if you have the interest or need to dive into it. Although I have done a fair amount of research I find that I know just enough to know that I don't know enough.

I did an At Home Sleep Study and My Sleep Doctor has diagnosed me with "Obstructive Sleep Apnea" and prescribed me an "Auto CPAP w/Modem at 5-20CM H2O" along with a long list of supplies. I got a copy of the Sleep Study and I have attached it for everyone's review in hopes that one or more of you can offer any insight or guidance that might help me get this illness and maybe the other under control. I would appreciate any time and wisdom that any of you can share.

When viewing my Sleep Report please keep in mind that this was worst night of sleep I've had in years. The Cannula used to monitor breathing drove me batty and I swear I only slept a couple of hours before finely removing the thing at 4:30 in the morning and then going back to sleep. Also, as my Afib is aggravated by sleeping on my left side I only sleep on my right side and back.

In finding that my health insurance is next to useless for this since it has a high deductible, I am using online resources for the APAP and supplies. Hopefully I will be able to turn these expenses in towards my deductible later but fortunately that is is minor concern at this point in time. I had placed an order for an AutoSense 10 Autoset for Her w/ClimateLine Tubing with a Resmed authorized dealer who listed it as having 2 in-stock only to find out that it was not in-stock. Due to their mistake they have graciously offered to upgrade my order to an AirSense 11 Autoset and throw in ClimateLine Tubing at no additional cost. Unfortunately they're telling me that it will be another 7-11 days before it is estimated to be in-stock to ship.

In the mean time I have been left to continue to research, learn, and stew over this. The problem I see now, I take it that the Autoset machines are not really capable of handling Central Apnea very well of which I seem to have a fair amount of, if I'm reading the report correctly. So, now I'm doubting that the Autoset model will fill my needs and that I have made an error, in not asking/pushing my Sleep Doctor to prescribe an AirCurve model, before I moved to placing an Autoset order.

Please point me in the right direction, I'm so confused! Thank you in advance for any insight you can offer...

           

[Sleeprider]

No doubt you need the positive airway pressure, and while there is a significant central component, we won't know if that will persist with CPAP or not. That is the reason EVERYONE starts on CPAP. The insurance companies won't approve a higher level of therapy unless you fail at CPAP. Your new Airsense 11 Autoset is a very sophisticated machine and is supported by OSCAR software. Be sure to download it, and consider getting a 4 to 32 GB SD card, just in case your machine does not include one. That way, you will be able to collect and see detailed data right from the beginning.

We can't and won't predict your results on CPAP. Your settings are basically wide-open so even your doctor is waiting to see what happens before narrowing in the pressure prescription and perhaps adding EPR (exhale pressure relief). Your CPAP therapy will be based on trial and error. There is no point getting anxious about it. You will use the therapy, the results will be analyzed and corrective settings will be tried, starting the cycle over again. That's the way your doctor will approach this, and if we offer suggestions to optimize your therapy, that is how we approach it as well. So welcome to the world of a crash test dummy. Your apnea issues are not unusual nor exceptionally severe. This will all work out, and the first task will be to squash the obstructive apnea component, followed by hypopnea, flow limitations arousals and if the centrals persist, then we will tackle that later. This therapy is life-changing, your A-fib was a warning sign you needed it. It's going to work out great and you'll be surprised how you don't need to control it...just let it happen, and if there is a problem, then you need to start advocating for a change.

[leanintoit]

Hello Sleeprider,

Thank You, so much for your response.

You have very much clarified what I thought I was seeing in my Sleep Study, the seemingly likely cause of my AFib and the Central Apnea component. From what I have gathered so far, controlling the CA will likely be the toughest part of the treatment to achieve.

What you said makes perfect sense, its a path to treatment that must be followed rather than trying to jump to the end which is what I was hoping to do. With my high insurance deductible I will be footing the bill for all of the hardware. So, meeting any insurance requirements is basically irrelevant in regard to my treatment regimen. With that in mind I was trying to jump to the end equipment as quickly as possible and in one step would be ideal in both treatment and cost. I guess this just doesn't work that way and I must stick to the treatment path and see what happens at each step even though it seems clear that the AutoSet machine doesn't handle CA very well. My Sleep Doctor basically told me as much, he told me that the APAP is the first step. That didn't really register at the time but now I get it. However, now that I know a little more than I did then, it seems like the first step should be skipped given the CA component shown in my Sleep Study and the limits of AutoSet to correct it.

I do already have Oscar installed I'm just waiting for the equipment to use it.

Again, Thank You for your time, knowledge, and attention.

[Sleeprider]

If you want to jump to the end and pay out-of-pocket to save a lot of money and time, then the best alternative is to watch DotMed for an affordable ASV. The two options I would suggest are to search for the Resmed S9 VPAP Adapt model 36007. This is the prior generation ASV with AutoASV algorithm and is nearly identical in therapy and efficacy to the current Resmed Aircurve 10 ASV. You will find used machines ranging from $550 and up for the S9 to nearly $2000 and up to $3000 for the S10. There are several VPAP Adapt machines there now. Just talk to the vendors and as long as you get a clean machine with under 10,000 hours, you will have something that both works and will save you a ton of cash. Supplier #2 used to be a great place to pick up ASV, but their price has doubled to nearly $3000 for refurbished and is now about $4200 for new. That is not a deal. I have found good deals using Search Tempest, Offerup and Facebook Marketplace. if you find the machine, we can get you setup with the correct settings.

You may want to discuss your insurance situation with your doctor and offer to pay for a device out-of-pocket. If he is an open-minded person, he can prescribe ASV based on your current test results. He is stuck using the insurance "try and fail" approach unless he knows you want to cut to the head of the line by self-funding equipment. Eventually he will be able qualify you for insurance reimbursement, but he is stuck with the system unless you offer to go outside of that convention. This will allow you to continue working with your doctor with your ASV and opens up the online sellers to obtain equipment with a prescription. CPAPdirect is offering the ASV for $1600 off the MSRP of $4500, so the price of $3400 is still high, but you may find lower by searching and calling. Remember suppliers cannot advertise a price lower than the minimum advertised price imposed by Resmed, so phone calls are a good way to get better prices. If you want to purse this avenue of self-funding equipment to save money in the long-run and to continue working with your doctor, I recommend you discuss this with him before accepting and opening the CPAP.

[leanintoit]

Hi Sleeprider,

You've given me a wealth of knowledge about the Apnea Treatment Landscape. Now with that knowledge I can start to navigate the system to find the best options for my treatment.

I can't Thank You enough for your guidance with this!



I've noticed that my wife sometimes snores when she sleeps and periodically complains that she didn't sleep well and feels tired. So, I had her sleep with my Galaxy Watch 4 last night. She only wore it 4 hours before ditching it but it did show that she's having blood oxygen dropping down at different times to 78%, 88%, and 84%. With that, I've encouraged her to also have a Sleep Study done. She's significantly overweight and she asked about what could be causing this issue and we talked about how being overweight typically contributes to the Sleep Apnea. I don't see much changing in this regard since no amount of gentle encouragement to get her active on my part has any effect. Not that I'm a great example but I do exercise and try to stay active.

Since it seems that we may both be heading down the path of Sleep Apnea Treatment I no longer see any reason at this point to try to jump to the ASV machine. I think that no matter what one of us will be able to use the AirSense 11 Autoset long term and if that's not me it won't be because I didn't try it. So, if it arrives next week as estimated, I'll start with it and give it a thorough try. Hopefully it'll be more effective than I think in treating the CA that my Sleep Study indicated.

Also, today I'll be receiving a Soft Cervical Collar that I'll try out tonight. I tend to sleep with my mouth open and I've found that I have more resistance breathing with either my mouth open or with my neck bent forward. From what I've read hear I think it might help with treatment and if not it's a very small investment for a potential major gain.

Again, Thank YOU Sleeprider!

[Sleeprider]

Both my wife and I use PAP. I'm using a Vauto and she has an Autoset. Her apnea was relatively mild and consisted of mainly hypopnea, but she really likes the machine and sleeps better. We both use Resmed Airfit P10 nasal pillow masks which are very lightweight, quiet don't blow vented air. Your wife's oxygen desaturation is severe if that is accurate, so getting her into therapy is the right thing to do. Any questions, feel free to ask.

[1Joyous1]

Is there any way to rent a machine in your area? I failed at Cpap and Bilevel. I’m waiting for insurance to approve more sleep testing. I could have rented the “wrong machines” but the DME never mentioned that option. They wanted a sale. Cheers.

[leanintoit]

Hi Sleeprider,


I'm glad that you pointed out that my wife's "oxygen desaturation is severe". At this point I'm not really clear on what categories things fall into. I know some of the base lines like AHI should be below 5 and blood oxygen should stay above 90% but I'm not really familiar yet with where mild breaks over to sever. So, your reminder that at least some of the numbers I listed fall into the sever category are helpful to make the point that her treatment should also be treated with due urgency. Thank's for making that point clear.

Its unfortunate that we're in the position to need apnea treatment but its been a real help that you've shared your experience. Hopefully at some point I can start to repay or at least pass on a portion of what you've shared.

Thank YOU!


Hello 1Joyous1,

That's a good point and great reminder about rental CPAP units. I was initially offered a ResVent Ibreeze by my local DME as that was all they had available due to the widespread machine shortages. They did offer the option of a rent to own option that was 10 months in length and totaled $1080. This DME couldn't even work me in to schedule an appointment, schedule an appointment, not the actual in person appointment for 3 weeks. Obviously the in person appointment would be sometime beyond 3 weeks. They where nice enough to immediately start working the insurance approval and let me know the options on how much the unit would be. So, with the local DME only offering a machine that I had no interest in and at what I think is an outrageous price, I quickly moved on to look for other options.

I was fortunate to find an online DME offering an In-Stock New AirSense 10 Autoset for Her with Heated Hose for $720 after a coupon discount. I immediately decided that I shouldn't and couldn't pass that up. Unfortunately shortly after placing the order they removed that web page and then notified me that they made a mistake and didn't have the ordered unit. They have attempted to make that mistake right by upgrading the order to an AirSense 11 Autoset and including an additional Heated Hose at the original order price. However, that machine was also not not in-stock. I've been assured via several update emails that it will be shipping within the next few days when they receive stock, as was originally promised. Time will tell... Even if things go as now expected with this order it seems that this will likely not be the end of my CPAP saga as I imagine that I may require a different machine to treat my CA and also work something out for my wife.

I'll have to remember to circle back to considering the rental CPAP as an option especially with regards to possibly needing one of the much more expensive AirCurve machines. Thank you for that reminder!