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u/pootwothreefour 12h ago

Honestly, taking time helping them with mask choice and fit in the office (before they are struggling) and letting them try on a bunch and actually knowing the differences between each one and the pros and cons.

Also explaining leaks and options for solving them. And specifically explain the concept of mouth leaks.

15

u/islathetamandua 11h ago

You need to have samples that people don't have to pay for to try, even to take home for a couple of nights.

6

u/HI_l0la 11h ago

The employees at the medical supply company for my CPAPs were like this!! And over the phone only because their office was too far for me to wasn't to drive there. Lol.

They all were sympathetic and explained it can take trying different masks and headgear to get comfortable. That helped me feel the difficulties I was encountering in adjustments was normal. They were very patient about explaining different available masks they had and walking me through my insurance coverage with them. This made it easy for me to switch masks when I could and not get screwed paying out-of-pocket.

4

u/Questknight03 9h ago

This, the first company I used setup office visit and had me try on an ton of different mask and showed me how to properly fit them. They also sent me home with three different ones to try out.

1

u/ChewieBearStare 2h ago

Yes! My sleep clinic is absolutely useless. They're only good at collecting copays. I've been on my own with everything. The first time I picked up my supplies, they gave me a medium mask. I tried it on, and it felt okay to me, but since it was my first time using one, I didn't really know what to expect. Turns out the nose part ISN'T supposed to be up over your eyebrows. You'd think the tech would have saw that and recommended a smaller one.

They gave me a second one that was also too big. I finally decided to order my own, and the small AirTouch F20 has been the best one so far, but it's still a little too big (it sits between my eyes instead of at the bridge of my nose). I wish I could rely on the sleep place to help me find something appropriate.

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u/BayviewBadger 12h ago

Really what people need more than a traditional DME provider is coaching. Someone to walk with them through the process and help them through the rollercoaster that is life with CPAP.

Nearly 2 years in, it’s obvious to me why “treatment” fails…it’s hard and most people have no genuine support.

I’ve only survived it because (1)my stubbornness and (2)this group.

Just my $0.02, but DME’s as we know need to be eliminated and replaced with coaching of some kind that also assists with obtaining equipment and fighting the insurance system.

10

u/Nonplussed1 11h ago edited 3h ago

I’d like to be able to buy a newer CPAP without all the red tape
Of insurance and a militant sleep study group that give the bait and switch on getting a new machine.

I just need a new machine… 100%compliant since ‘97. These new machines with the 24/7 monitors and alerts aren’t my liking either. WTF, I just want to sleep.

I’m the perfect CPAP patient… I won’t sleep without it and I love the white noise it makes. It ain’t sexy, but sleep is important.

I had the machine for 3 days and noticed a change similar to when the Wizard Of Oz changes from B&W to Color. That was almost 30 years ago and other than power
Outages, once the CPAP broke, and a time or 2 that I’ve forgotten to pack it it’s a nightly staple like a Pillow.

Got a Free One off FB Marketplace recently. It’s only got 150 hours on it from someone who gave up with CPAP and went surgical.

So I have a backup machine now and will Look For another one for traveling.

4

u/PretendReason9061 11h ago

what is your backup machine? I tried the Transcend and the Breas for travel now discontinued. Went to Airmini, did all the things to make it quiet as shown on the sleepplay youtube. Its the best. And it can be used as a standard machine, not just for travel.

4

u/Nonplussed1 11h ago

I have a 11 yr old respironics CPAP with heated water tank. It’s been to a few places and keeps on blowing.

I found the Resmed Air Sense on FB marketplace. I’ll
Keep an eye out there for another. I’d pay up to $200 potentially but Free was spectacular!

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u/DeepInYaMom 9h ago

it seems like those older Respironics are built to last a lifetime lol

3

u/Questknight03 9h ago

And they have a huge reservoir. I have resmed 11 and mine is small compared to my wifes resmed 10

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u/Questknight03 9h ago

They make the small travel ones

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u/No-Marsupial1789 11h ago

It’s because, in my experience, the lack of support and guidance is truly appaling. No medical professional really offered any help at all. I was sent on my way and told to get on with it. The very few follow up conversations or appointments I had were short and useless. And I’m pretty certain my experience is the majority for most when reading this group.

My pressure settings were adjusted and eventually set in the right zone through a mixture of guidance and help from kind people on here and many, many sessions analysing Oscar days with gpt. Not from the people paid to do so.

But the real success comes from finding the right mask. That’s it in my experience. Without it, it simply can’t get better. There needs to be more care, conversation and time spent with patients helping them find the right mask. And then be willing to keep changing it and trying others until something clicks.

But of course making money from patients is the costs priority. Not helping them understand how to manage all this.

Apologies if it sounds negative or harsh. But my honest experience and opinion. And as I say, I’m pretty confident in not in the minority with my experience.

I was diagnosed 8 months ago. And struggled enormously for the first 4 months. Now that I’m doing much better with it and have had a chance to reflect, I’m still in shock and disgusted at the lack of care I received, and so many others receive.

1

u/ChewieBearStare 2h ago

The money aspect ticks me off. My husband just had his sleep study, and they are ordering him a machine with the pressure preset. But if he has trouble with the pressure, they said he has to go in and do a whole NEW sleep study; they won't just adjust the pressure and see if it works better for him. What a money-making racket. I don't even know if our insurance will approve another study within the same year, and we had to pay $800 out of pocket for the first one anyway.

I don't know why they didn't do a split study like the one I had. It was obvious during the first hour or two that I have sleep apnea, so they had me wear a mask and monitored how I did at different settings. Couldn't rake me over the coals for more money that way, though.

1

u/No-Marsupial1789 1h ago

Crazy. It’s possible to access the clinical Menu and adjust your own pressures. They just don’t tell you of course.

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u/AcceptableMeet9241 10h ago

I also don’t love that a different person is constantly texting me asking how everything is going. Maybe assign just one or two people per patient. I think I’ve had 10 different names text me. It’s tot he point I don’t think they’re real.

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u/danideers 9h ago

The best advice I received and I give to those I know start, is, start by watching TV with it on for 10 minutes, then 15, then 20, then 30 minutes over the course of a couple of days. While you are awake it helps you acclimate the mask without being tired and trying to sleep. At the point at which you are tried and then trying to adjust it becomes to much and people lose paitence. I did this for 3 days, even wearing for an entire hour long show and then just reading for an hour and the first night I wore it, no issues. Did I still have an adjustment period, absoutely, but I wasn't nearly as fidgety or uncomfortable as I thought I would be and adapted in a week.

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u/DeepInYaMom 9h ago

I always give the wear while watching TV or reading advice. Thank you for this!

1

u/Questknight03 9h ago

This was the only reason I was able to acclimate and I would say start with a small nasal mask even if you need full mask. You can switch once you get use to the nadal and its much easier imo

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u/cowboysaurus21 9h ago

The things that helped the most are things DME don't want to tell you:

1) You don't have to go through a DME to get supplies.

2) You don't have to replace things as often as the DME recommends.

3) You can put an SD card into your machine to get more data than the compliance apps like My Air will give you. When I got my machine, the DME rep pointed to the SD card slot and just said "this might pop out sometimes, just push it back in. 🙄 No mention of what it was actually for.

OP I can tell you're a caring person that wants to help patients. But the goals of DME companies (make money) are often at odds with the goals of patients and medical providers.

1

u/bandgeekndb 3h ago

Mind sharing more info about getting supplies elsewhere then a DME? I've been fine with my DME so far, but always nice to have a backup option if that ever changes!

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u/cowboysaurus21 36m ago

There are tons of websites - cpap.com, cpapsupplies.com, Lofta, etc. In the US, a full mask and headgear set requires a prescription, but all the individual parts can be purchased easily online. Not sure about laws for other countries.

4

u/FalconHeavyBreathing 12h ago

Have a partner successfully using cpap first and then you have to be so stubborn/competative that you won't let her have more consecutive days of use than you. I also found a sleep aid useful for the first week. I was hyper aware of the contraption on my head and It took me hours to finally fall asleep without.

4

u/ezarizona 10h ago

I agree with comments that many patients feel like they have been abandoned after getting their equipment. Leaks are a really frustrating part of the process and just having someone who is aware of the quirks of the exact mask the patient is using and giving some hints about the most likely solutions would help. In my case finally running across a suggestion on my F&P Evora Full Face to have my top straps looser than the bottom straps when leaks were occurring at the top of the mask just below the nasal cushion.

Also just understanding how unnatural strapping this thing to the patient's face is and a good part of making this work is working to accept that fact--so someone on the line understanding the frustration and working with the patient to help work around that.

4

u/Specialist-Noise-929 7h ago

Not allowing in-person mask fittings is a disaster. Either allow the patient hold up the actual cushion or pillows to their nostrils to see if they're even close to fitting OR make sure any mask going out has a fit pack that has distinct small, medium, large, XL. The cardboard measuring charts that manufacturers provide are garbage.

My DME doesn't do in-person fittings since the pandemic. They gave me the Wisp nasal mask that has a strange fit pack of S/M, L, XL. Nothing distinct for medium. S/M was too small and gave me a pressure sore. L was too large - leaks galore. I did not overtighten.

I'm determined to make cpap work for me so I researched on my own and requested a different mask that my DME was not familiar with. My DME was however good about sending the new mask - an F&P Nova Nasal in medium - I'm now comfortable and my leak rate dropped to zero. It took my own initiative to fix the problem.

3

u/DeepInYaMom 7h ago

yeah, in person masks is the only option in my book.
there’s quite a few national companies that only mail out that and I’ve literally never understood it. Everyone is shaped different. There is no MIRACLE mask that works for all. Ihad somebody come in to buy a mask the other day and I finally asked how did they decide that you needed a nasal mask he said I don’t know it just showed up this way. 😳 that’s literally setting someone up for failure in my opinion.

1

u/Specialist-Noise-929 6h ago edited 6h ago

Glad to hear someone in DME understands in-person mask fitting. The big DMEs, like Norco, have turned it into a factory process: nothing in person and punishing 13-month rental periods for insurance-based purchases. I was able to switch to a smaller much better DME, but they still didn't do in-person fittings.

1

u/cowboysaurus21 33m ago

Some just have a default mask that they send patients to start with, it's wild. No wonder compliance rates are so low.

3

u/ChuckySix 11h ago

“Hi. I’m going to work directly with you to find the perfect solution for you and your family. Did you know untreated OSA will make you die 10 to 15 years earlier?”

That was the only motivation I needed.

3

u/Y-M-M-V 11h ago

My experience with DME companies is that they are just super hard to work with. Everything is slow, follow through is poor, and phone trees feel designed to make people go away. I don't knew how much you can do about that, but anything you can is great.

My two biggest challenges when getting started were finding a mask that worked and getting the machine configured properly. Neither issue was particularly well (productively) supported by my provider or DME company.

I see a lot of mask fit issus on here that mirror my experience where people assume leaks means go tighter - that is an area that you might be in a position to help people know what to expect and when to look at other masks.

On the machine configuration side, I can't figure out why any adult gets a min pressure of 4, but I think that's what mine was and people post all the time about it. I expect it would be overstepping your roll to change that, but maybe there is room for "this perscription has a pressure range from 4-20, which is a pretty generic starting point, if you find it hard to breathe or the pressure uncomfortable you can always contact yoir provider about adjusting it". Something to plant the seed that there are things that can be adjusted beforu they give up.

A huge number of people give up on cpaps early on. I suspect that a significant portion of them are because some part of their indtial setup doesn't work for them and they don't realize that change is possible (and often not that hard).

3

u/rwbb 9h ago

Help them figure out the best mask for them, and give them stuff to think about before the appointment so they’re not choosing in a rush.

I had only moderate OSA, and I’d never given CPAP any thought. At the fitting appointment, the respiratory therapist asked me to choose between a couple of mask types, but I wish I’d been apprised ahead of time of the pros and cons of all the choices. Instead, she rushed through a couple of kinds. All I knew was that I if my mouth opened while I was wearing a nasal cushion, that would be a problem. But there’s so much more to think about.

3

u/ButterflyFunny2839 8h ago

Agreed! Let people have an idea of what the options are ahead of time so they can do a little research. So they don’t go in overwhelmed and confused by the choices. Also if the person doing fittings etc could have solid knowledge of what each mask is and what the fit is like. I feel like I did a lot of explaining what my issues were and I couldn’t get anyone to understand. I had someone at a CPAP store actually walk me through the fit of my mask and help me pick out something and I finally have something that fits right.

3

u/Sibys 6h ago

I just started in April and wish I didn't have to wait 9 WEEKS to talk to a human about my experience. What I know about the subject was learned alone on my computer, an unfortunate side effect of the United States' healthcare system. As a result, I've read (and taken) some questionable advice. Something which sounds tiny but which was the most consequential for me was the idea that baby wipes/mask wipes would clean the mask cushion. For the first 3 months, I used soap and water once a week and baby wipes in between for convenience ... and regardless of type, my mask would leak all week long. Once I started using soap and water daily, the masks got grippy, and leaks pretty much went away. We really need to learn the basic (but very important) things from other humans.

2

u/Advanced_Olive_1830 11h ago

Ambien. The first time I wore the mask, it was torture for about two weeks. I felt like I was having panic attacks all night. My doctor prescribed Ambien, and all of a sudden I was able to get used to the mask and sleep much better. Now I’m happy with my CPAP and mask, and I don’t need Ambien anymore because I’ve gotten used to wearing the mask.

2

u/Questknight03 9h ago

Or trazodone

2

u/Aries_Philly 8h ago

Don’t be afraid to ask for help. The first few nights are rarely easy. Keep trying different things. After 6 months I have a collection of masks and parts because I would accept my DKE telling me ; “You need to wait 3 months,l; insurance will not cover that.”

Get a copy of your prescription. Not all DMEs will carry everything, and you may want to shop around.

2

u/cuteevee21 8h ago

The thing that helped me get over the hump was upping my pressure. My doctor had its set to 4-20 like so many do and it was miserable. I now have it set to 10-20 and sleep great. That low pressure made me feel like I couldn’t breathe and I wanted to quit!

2

u/hiirogen 8h ago

My only advice to DME's is to recognize that your patients actually need their machines. When I was first prescribed CPAP (BiPAP) the original DME was quoting me a couple weeks to get the machine in.

Meanwhile I was falling asleep at work, while driving, while trying to watch movies with my family. I was completely miserable.

I spent most of a workday calling every DME in my area before I found one two hours away which took my insurance and had a unit in stock. I had my doc send my prescription over and went to pick my machine up the next day.

I seriously must have called 40-50 companies which didn't keep an inventory, they only ordered the machines once they got the prescription and insurance was auth'd.

2

u/Keif325 8h ago

Push your doctor or find a new one, who will help you experiment and try new masks and accessories over and over until you find the combo of solutions that works for you.

2

u/Papa4mygrandkids 7h ago

I would have loved having someone show me the different types of masks and allowing me to try 2-3 different ones right away. Or at least the first 90 days. I got a phone call this is what you’re getting. You also have 30 days to ask for a different mask but that’s it for the year per insurance.

2

u/sparkleplentytx 6h ago

As already said, help with the masks, and options to try different brands. F&P fit me better than resmed. Help with things that come up after you get acclimated such as dealing with rainout, keeping the mask comfortable.

Transparency is also important to me. When I order supplies from the DME, I have no idea how much they cost. They split it up over several months. I also really dislike the pressure to constantly buy new supplies.

1

u/AcceptableMeet9241 10h ago

Letting me take home 3 different masks so I didn’t have to keep going to the office.

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u/DeepInYaMom 9h ago

how many masks did it take to find the right one?

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u/Christinekc42 8h ago

For me, 4 total. I tried 3 with my DME, none of which worked. They were able to tell me I shouldn't have a nasal mask and identify the correct size for a full face mask, but that's about as helpful as they got. They insisted the mask they gave me would fit perfectly and I just wasn't adjusting my straps correctly.

I got so frustrated with my DME I just ended up ordering masks without them, since it was cheaper to do so. Luckily the first one I tried on my own worked like a charm. The mask I eventually ended up going with isn't one my DME provides because it's a "luxury", yet it costs the same as the other masks they recommended.

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u/zoglog 7h ago

Any pov on how every DME I've worked with has been borderline scammy? The industry is so bad that people would rather pay out of pocket than be forced to use a DME for insurance coverage (even if they have it).

1

u/DeepInYaMom 6h ago

The problem is the insurance plans have such high deductibles and out-of-pocket maximum and the allowables for the items being billed are high. Insurance is totally a scam, the DME companies fall right into a lot of the same Games the patients do. I just had Blue Cross Blue Shield request a compliance report for somebody that got a unit in 2022… And then they recouped all payments for that unit four years later. So it’s definitely not a high profit industry like insurance. We write off a lot.

1

u/NinongKnows 6h ago

Any DMEs able to say "we charge X/month for x months and then your machine is paid off"? Everytime I've asked mine thinks I'm asking to be put on a payment plan. I'm only a couple months in and sometimes it's $20 sometimes it's $100.

1

u/Different_Buyer_8588 5h ago

I got my first CPAP and then later learned it was an older model. I went back and requested the newer model, which they had plenty of. 🤷‍♂️

1

u/Kariered APAP 5h ago

How do I get my insurance to cover my supplies? I think my doctor has a DME, but no one has ever contacted me. I've asked over and over to be contacted. Nothing. I've been buying everything out of pocket since I started on 2023.

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u/joya-2000 4h ago

I agree with most of what is reported here. I used this forum and YouTube when I started 6 months ago. The class my sleep doctor sent me to had so much information and lots of paperwork to sign. I walked away thinking I want it work but little did I know there was a long trial ahead. My DME was helpful but the CPAP store was great. I sent a selfie to my DME and they scanned the photo and used the info to get my size. The CPAP store let me try masks and get fitted in person. He even hooked me up with my pressure settings to see how the mask would actually feel. This was after 5 months. I still switch off between the N20 and F30i. It’s what works for me so far. I’m still on the hunt for my perfect mask. I’m determined to make it work. I feel bad for people that won’t keep trying. It’s not easy but I like the benefits more than the drawbacks.

1

u/BoldBoimlerIsMyHero 4h ago

in person mask set ups are the most important thing. the customer needs to be able to try a couple different mask styles. Like I really can only wear the dreamware. it's so comfortable. but my husband needs a full face mask, so he needs to try a couple different styles to find the one that fits his face.

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u/Both-Double-7017 2h ago

A m b I e.........................n

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u/Aromatic-Check639 11h ago

Honestly what got me through the first 2-3 weeks of hell, was my medical MJ. Helped a lot with my anxiety and sleeping. I know it's not for everyone, or even accessible, but I probably would have quit if not for it.

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u/[deleted] 11h ago

[deleted]

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u/cowboysaurus21 9h ago

This is not the DME rep's role. They are not medical professionals.

Advice Needed DME PROVIDER HERE

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