Thoughts on my Data? - Printable Version

Thoughts on my Data? - Printable Version

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Thoughts on my Data? - Hydrangea - 01-31-2017

So, I'll be going in for my first CPAP follow-up soon, and I thought I'd share my data with you first to see what your thoughts are on it.

I'm waking up with my brain working; I'm not yawning throughout the day; I'm not utterly exhausted all day long; I'm needing much less sleep (7-8 hours vs 10+ hours/day); I'm productive throughout my day, even right off the bat in the morning (I used to need 4 hours to really wake up and think about being productive). like

So I'm very glad to have this CPAP, even if I am a very mild case (as my dr called me). And I'd like to get the most out of it.

My sleep dr recommended a pressure of 5, since that's where I got the most REM sleep on my titrated sleep study (which did pressures from 4-7), even though I also got REM in the 7 pressure.

I am proud that I've adjusted to sleeping with a mask and breathing through my nose. BUT I feel like I'm not necessarily getting enough air when I'm on the CPAP. (I will request to try another mask that allows me to breathe through my mouth.) Sometimes I have to pull the mask off and get a couple good deep breaths with my mouth, and then put the mask back on - this is mainly when I'm trying to fall asleep. I wonder if the pressure needs to be higher.

I'll post 3 screenshots. 1 is the data from the 18 nights since I got the CPAP. I've used it every single night, but it didn't count a couple(?) nights because I used it for fewer than 4 hours (I needed to take a rest from it those nights, because I needed to breathe through my mouth).

The other 2 screenshots are details from the last 2 nights of sleep. One of those nights I didn't sleep very long, because life interfered.

And last night I woke up around 6am-ish and found my mask tucked under my pillow! I remembered that I'd taken it off at some point in the night because I was needing to breathe through my mouth (I think one of my nostrils was plugged up due to environmental allergens).

Would you mind taking a look at my data and helping me better understand what the data means, and what I should hope for from my appointment? If it's feasible, I'd love to have an angle for getting my dr to switch me to the Auto CPAP. I also plan to ask for a heated hose, so that I can more freely adjust the humidity without experiencing rainout... and to have slightly warmer air, since my DH keeps the room cold. The dr already told me I can try another mask, so I'll pursue that as well.

Thanks for taking the time to read this, and to hopefully reply. Grin

RE: Thoughts on my Data? - Sleeprider - 01-31-2017

You are having excellent results, and combined with your sense of feeling better and less fatigued, that is probably all your doctor will be interested in. Your leaks are low, and your therapy is effective. You average about 6.5 hours of use/sleep, and that is a bit short, but if it works for you, that is compliant. I see an opportunity to experiment with small increments of higher pressure in 0.5 cm increments that might be beneficial in reducing the residual obstructive events (OA, H and snore). It is certainly not necessary, but you may want to ask if a small pressure increase might be beneficial.

Most of us would just implement this on our own, aware that you can always go back to your current settings. Good luck with your appointment and I'm sure your therapy will be seen as a success.

RE: Thoughts on my Data? - DeepBreathing - 01-31-2017

Quote:BUT I feel like I'm not necessarily getting enough air when I'm on the CPAP.

Your fixed pressure of 5 is lower than average and may be the cause of this problem. It's certainly giving you good results as far as apnea and hypopnea, but might not be giving you sufficient pressure at the mask. I'd consider bumping it up a bit to see if this helps. It will also, as SleepRider said, help clear up the few residual events you're experiencing.

RE: Thoughts on my Data? - Hydrangea - 02-02-2017

Thanks SR & DB. I now feel better armed for going into my appointment. We'll see if I can sweet talk the dr into an Auto.

RE: Thoughts on my Data? - Hydrangea - 02-02-2017

Well... no more CPAP for me.

My sleep dr got upset with me when I advocated for an Auto. He told me he was unwilling to allow me to have an Auto (& unwilling to write an Rx for an Auto), but he was willing to allow me to keep the Pro and he'd just put it in Auto mode for a trial period. I said no.

It became very obvious to me that he didn't want to lose $ by taking back my Pro. He blamed me: "Well why did you ask for this [Pro]." I told him it was what I was given. He blamed the technician: "She won't be able to because your insurance will not authorize it." I told him my insurance will pay for *any* CPAP machine.

But nope.

Also, I mentioned my experience with rainout and with cold air from the room burning my lungs (but DH needing the room to not be warm). He told me I should go buy a sleeve for my non-heated hose.

I'm moving across the country, and he knows he won't make money from me. (Even though if they would've been helpful, I would've continued getting my supplies from them, shipped. I'm loyal if you earn my business.)

So... I'm thinking I should just buy my own machine and supplies, and skip insurance and doctors.

I'm kinda P*ssed that I'm going to get crappy sleep now, until I am able to get a machine elsewhere. At the same time, I'm glad to wash my hands of this dr/dme, since they very obviously only care about $.

RE: Thoughts on my Data? - OpalRose - 02-02-2017

Is your doctor connected with your DME? In other words, does he get a kickback. I think you need to find a new doctor. Get a copy of your prescription and sleep study.
And for your own knowledge, insurance companies pay the same regardless if you are prescribed a CPAP or APAP. They just make more profit by giving you the CPAP.

RE: Thoughts on my Data? - Hydrangea - 02-02-2017

(02-02-2017, 11:17 AM)OpalRose Wrote: Is your doctor connected with your DME? In other words, does he get a kickback. I think you need to find a new doctor. Get a copy of your prescription and sleep study.
And for your own knowledge, insurance companies pay the same regardless if you are prescribed a CPAP or APAP. They just make more profit by giving you the CPAP.

Yes to all of the above. I think this is a classic case why a dr isn't supposed to be in partnership with a pharmacy.

Yep - i was armed with that info from here (this board) and from my insurance, which I'm grateful for, so I wasn't willing to tolerate his lies.

So, going forward from here... I have my sleep study and rx, so I could just find a different DME, right?

RE: Thoughts on my Data? - Sleeprider - 02-02-2017

If you are self financing, just get what you want from Amazon. About $429 for a Dreamstation Auto DX500TXT11 with heated hose and humidifier. Everything from your Pro will work with the Auto, so you can just continue getting supplies from your current DME, and you should have what you want in about 2-days without any hassle.

I would never, ever, ever use a doctor that filled prescriptions in-house. The conflict of interest is obvious. I'm aware of a practice locally that has physicians that operate their own sleep clinic and DME under one roof. That's ridiculous. The patient would have no leverage at all. It should be no problem getting a heated hose from your doctor, with you experience of rain-out. He is just pocketing the difference in cost. A new heated hose costs $40 and unheated $10. Your doctor affiliated DME is probably getting paid $90 for either a heated or unheated hose and obviously maximizing the profit margin. I think I'd seriously look for an alternative in-network provider, and call this a lesson learned.

Keep in mind, you have very good treatment with CPAP at low pressures. There is not an adequate medical need to justify changing out your CPAP machine at this point. The time to have stood your ground would have been before accepting the Pro. Anyway, get an auto if it makes you happy or you think you will do better. The Pro will be a great backup, and you can interchange all the parts.

RE: Thoughts on my Data? - Hydrangea - 02-02-2017

Thanks, Sleeprider. After checking out Amazon, I remembered I'd seen a recommendation on here for a good DME that just so happens to be in my area. So I called there, and sure enough they took care of me. Hooked me up with the Auto and heated hose without me even asking; they say that's their standard. DANG, WAY better than my DME dr. They were awesome - they showed me everything very thoroughly, and even worked with me on finding just the right mask. Now THAT is good customer service.

After my experience over the last month of sleep studies, follow-ups, CPAP being bought/rented from the sleep dr, etc.... I've most certainly concluded exactly what you're saying: your sleep dr should NEVER be your DME. That is definitely a huge conflict of interest; and you're absolutely right about no leverage. My sleep dr (acting as my DME) made it so clear that I'm simply a means to him getting $, and he had no care at all about the patient sitting in front of him.

Also, I'm in agreement with you about the low pressures being good for what I need. I have no desire to go high. I simply want to find the right pressure for me. Before my sleep dr realized I meant business, he said he'd be willing to set my machine to do an auto of the lower numbers (but he didn't say exactly what they should be). Based on my info in my OP, what would you suggest? I'm thinking of just going into the clinical menu and setting it to 5-7, just to see what happens.

RE: Thoughts on my Data? - Sleepster - 02-02-2017

(02-02-2017, 10:31 AM)Hydrangea Wrote: He blamed the technician: "She won't be able to because your insurance will not authorize it." I told him my insurance will pay for *any* CPAP machine.

You are right. He is wrong. Take your sleep study results to a different doctor and ask for a prescription for an auto-adjusting machine. Take the prescription to different equipment suppliers and get the best deal you can from them and your insurance provider.
In my opinion, you don't really need it. You were fine with your Pro. The reason is because your pressure is so low. Auto-adjusting machines are great for people like me who are bothered by higher pressures. They allow us to spend more time at lower pressures so we won't be bothered as much. But on the other hand, auto-adjusting machines are just a few dollars more and can be set in fixed pressure mode, so why not have one?
Oh, and don't belief the bit about your condition being only "mild". Yes, mild apnea is a clinically valid term, but it is used by researchers for statistical purposes. (They must have their categories so they can do their research). You noticed a significant improvement in the quality of your life with a CPAP machine, so for you that's as significant as it gets. You are also reducing the statistical likelihood of cardiovascular complications such as high blood pressure, heart attack, and stroke. Just not by as much as a person with moderate or severe apnea. But that is statistical, and there is no way of knowing the actual impact on any one individual, such as yourself!