Coffee With Lanky: How do we fix the broken PAP Therapy Healthcare system?

[@Freecpapadvice]

Do you have a radical idea that would fix this? This is a global problem. On a lighter note....My SWEET comparison of SCUBA diving vs. Snorkeling on my crapper channel: kzbin.info/www/bejne/n3rKoqyemN2af6M Links: 1. Have a PAP Analysis with me at: axgsleepdiagnostics.com 2. As an Amazon Associate, I earn on Qualified Purchases: amzn.to/3drPax1 Check out this videos sponsor! cpapsupplies.com/lanky-lefty-27 Use my CPAPSupplies.com (affiliate link): bit.ly/38yPlXk Use Discount Code: LEFTYSUMMER for the month of June for 25% off. Past August? You can always used LEFTY20 for 20% off. Check out my new Amazon Store: www.amazon.com/shop/thelankylefty27 (or....use my Amazon affiliate link every time you shop Amazon. I earn on all qualifying Amazon Purchases using the link. Thanks!) Join this channel to get access to perks: kzbin.info/door/g_Rj5qrxlCo4OX6MMq08gQjoin

[@KPHVAC]

We need sleep doctors or techs that actually know what their doing!! I was sent home with a pressure range of 5 to 15. Then my doctor got mad that I raised my starting pressure and made changes on my own. I learned more and got better care from your videos!

[@Freecpapadvice]

I really blame the AASM on this one if I was forced to point a finger.

[@shamramartin2079]

South Park “navigating the American Health Care System!!” 🥲😂😂

[@ahn0x]

I still feel like I'm stuck on this step for years, what do I do

[@KPHVAC]

@@ahn0x You have to find the right pressure. If you are set with a big pressure range you will spend the majority of the night at the wrong pressure. I kept raising my starting pressure as I got used to CPAP. If you are already used to CPAP look at your average pressure and set your machine to that pressure. If you stay on Auto pressure make your range within 2cm from low to high. My doctor set me up with a range of 5 to 15 and that was horrible. I quickly switched to a range of 8 to 10cm. Then I went from 10 to 12, and then from 12 to 14cm. Now I'm at a range of 13 to 14cm and it's perfect. Everyone is going to need a different pressure. The Auto pressure algorithm sucks! I also recommend watching The LankyLefty27 playlist called: CPAP and BiPAP Education Series on KZbin. You will learn just about everything you need to know about sleep apnea. If you really want to dive into the details get an SD card for your machine and download OSCAR or pay for an analysis from Jason (LankyLefty27).

[@KPHVAC]

​@@ahn0x That's weird my comment disappeared. You have to find the right pressure for you. Change your pressure so the range can only change by 2cm. Look at your average pressure and change your machine to that pressure. If you average 8cm then change your pressure to 8cm to 10cm. See if you start sleeping better. Each week I would adjust my pressure until I started sleeping great. I went from 8-10cm, to 10-12cm, to 12-14cm. Now I'm setup with a small range of 13 to 14cm and that's perfect for me. Jason (Lanky) would tell you to get off the Auto setting and go to one set pressure. The Auto setting is really only meant to help you find the pressure that you need. The Auto setting sucks because it's not going to raise pressure until you have an apnea or multiple apneas. On this channel watch his playing called CPAP and BiPAP Education Series.

[@tripod5147]

here in ontario Canada you can wait up to 3 months to have a sleep study done and they say that even if you cant sleep during the study they say its ok they will take the readings with all yourself wired everywhere while you were just lying down. then it will take another month to get a cpap machine. When you go back they take a report of the standard readings your machine spits out. if your machine reports everything is fine then whatever issues you have, well they just dont exist. nothing is personal anymore. wish canada had an in home sleep assessment.

[@W5FOM]

I had to wait 7 months between my sleep study and getting my machine (AHI of 107.5 during study) this was also expedited....Im in the US btw.

[@terrivanderworken4695]

I feel like you are talking directly to me! I have had quite a challenge with my sleep apnea journey. My initial in lab sleep study showed I had complex apnea with an AHI of 18. Not horrible..but not good. I have mostly central apneas. Sleep Lab recommended a Bi Level. It didn’t address the centrals and I still felt like CRAP after 2 months. So after learning about ASV from your channel and a Central Apnea group on FB, I went back to the PA at my pulmonologist office to ask for another Sleep study using ASV. You would have thought I was talking in another language. She had no idea what ASV was, I asked her to bring in the pulmonologist and She was VERY resistant to sending me. Wanted me to “wait it out”. Her words not mine. I wasn’t willing to. After more conversation she finally agreed to send me for another study. They set the machine up with a fixed EPAP-6 and PS range of 5-15. Gave me horrible aerophagia. Once so got the machine at home, I switched the Resmed Aircurve 11 settings to ASV auto with EPAP 5-15 and PS 4-25. (There is no IPAP setting. After a month on that pressure I read my results in OSCAR and was able to see that my EPAP never went above 9 and the PS stayed between 4 and 15. So I adjusted the settings to ASV Auto EPAP 5-9 and PS 4-15. My AHI is amazing between .50 to 1.5 AHI daily. Went back for a follow up and expecting a pat on the back for such great numbers. Instead she screamed at me for changing my ASV machine to do what it is actually capable of doing. She told me to. “Take my machine and find another Dr.”. So I did. Best advice she ever gave. We need more people like you to partner with the insurance companies to improve therapy and compliance. The sleep technician determines what treatment is working at the time of the study…after that.. the patient is sent home with a machine to use in the middle of the night. Alone. A lot of the time the settings aren’t right… leaving the patient feeling frustrated and worse than before treatment. Getting the patient educated on sleep therapy is critical to the success of therapy. Dr’s shouldn’t be involved after the initial referral to a sleep lab. This treatment requires specific knowledge and that apparently isn’t something that most dr’s are willing to invest the time to learn about. Breathing isn’t optional. I’m advocating for you to expand AXG sleep diagnostics to global service. I plan on setting up an OSCAR analysis with you once I am off “probation” with my insurance company and they no longer can hold compliance over my head. I still have some flow limitations I would like to optimize with your assistance.

[@CPAPfriend]

Rants are the new podcast. There's currently no better form of infotainment. 10/10 would listen to another Lanky rant.

[@JustinTuchek]

I remember asking for a BiPAP. My actual doctor told me that ResMed had a BiPAP version of the AirSense 11 which just wasn't correct. It took almost my entire visit to talk about it, and of course the visit cost me $400 I still had to do a follow up appointment with a technician, so now I've got multiple trips and appointments. They don't want to give up the machines if they're in short supply. Plus the amount they charge is way over online prices by hundreds of dollars I think the at home sleep study might be a problem. It leads to a vague diagnosis without much precision. Often sent home with a device with an excessively large pressure range that takes many months and many visits to dial in if it ever happens at all. I don't really know for certain but I'd like to believe that a real in lab sleep study would get people the right equipment and the right configuration out the door. People go home and struggle for months or years. Then when they actually try to get help afterwards they're thrust into a group of people who will barely talk with them or look at their data in detail

[@KellyKi-i6r]

I have had 2 sleep docs, both of them useless. 1st sent me home with CPAP and recommendation for Inspire if CPAP didn't work (um, hella no). I went into 2nd docs office in tears, explaining that I had been fighting with CPAP for well over a year. His answer was for me to use the mask I disliked the least and just hang in there. Have also had numerous interactions with techs fitting me for masks. None of it useful. All told me "your AHI numbers look great". Yet I was miserable. The best info I have found has been from you. I hadn't even heard of Bipap (or OSCAR) until you mentioned it. When you told me, I immediately bought one used. It didn't solve the leaking problems, but a game changer in the delivery of air. We need doctors who are willing to learn - from research, from their patients, from each other - and who want to truly help their patients, not just send them on their way with a pat on the head. Thank you for ALL you do to help those of us suffering with CPAP. We'd be lost without you.

[@CPAPfriend]

As someone who also works with patients, my advice is to be polite, present them with valid indications for bilevel that you meet (which can be found in the Resmed guidelines (I also did a video going over this)), and then if they still decline (provided you do meet indications, which almost everyone for whom CPAP doesn't work does), then request they enter that formally into the record and ask for a second opinion, which you are entitled to in the medical-ethics framework of pretty much every medical system.

[@gregjohnson8859]

Have insurance in the USA which pays for my machine and supplies which I’m grateful for. Never met my doctor and have talked to a nurse twice in 3 years. Machine was mailed to me after an at home breath test. Not much help out there so like others… I’m a KZbin CPAP Doctor and just adjust the machine until my sleep is good. Not sure it’s the best settings but it’s better than no machine. Glad to be part of the Cult! ✌🏼

[@hillcountryrings]

Bought a home test over the internet. Did the video consultation, 'bla bla bla..', got the script and bought my own CPAP machine and mask(s) online. Used Oscar and a lot of advice from you and Nicko to change/tweak my pressure and got my AHI down to less than 1 per hour. Feel a lot better and NO ONE tells me what I can and can't do as I'm doing it on my own dime. Oh... Say hello to Stewie for me (would be nice to see more Stewie content)...

[@czanderrr]

I'm fortunate enough to have incredible insurance and my CPAP experience has been horrific, I've been very much on my own and everything has just been so needlessly difficult to navigate! Thanks to channels like this one I am able to do some of my own research. I've had zero physician interaction/advocacy, just got referred to an online only DME who has been very unresponsive and slow (the time from my sleep study to finally getting my device was around 4 months). Not to mention, despite them covering a decent amount, my insurance company has been extremely opaque about what I actually pay for and what they do, and I've had to contest just about every invoice that has come out of my treatment so far. I'm on my third mask in the search of my best fit, and each one has been extremely hard to get - in retrospect I probably would have paid cash somewhere online just to avoid the hassle. I've had other much more serious health issues that had much less red tape/hours on hold/confusion, it's pretty bizarre! I don't have any answers, it just doesn't make sense considering how (relatively) straightforward and established the treatment itself is!

[@YoSpiff]

I've had 2 CPAPS, issued by different doctors and DME's in 2000 and 2015. In both cases the DME dropped off the device, set the pressure as prescribed and I never heard from them again. Surprising thing is I am in the US, where you'd expect these companies would want recurring sales of consumables. In 2010 I needed a new mask (my original "Breeze" didn't travel well and I'd done as many field repairs as I could). Having changed employers/insurance several times, and not remembering who the Dr was or having a copy of my prescription, I had a heck of time getting approval for a replacment mask without another sleep study. Now I can just purchase them online and even in some pharmacies.

[@FernaManu]

Here in Finland, where public health services are really great, the sleep apnea and other sleep disorders’ treatment is, apparently, at the same level as everywhere: awful. I was diagnosed one and a half years ago and given a Cpap machine with pressure set between 6-16, and “sent home”. After several months and noticing my AHI did not improve noticeably, I kept calling the health department allocated to me and was informed that my problem was I had central sleep apnea and my machine was, probably, not appropriate, but that we should keep following my condition for some more time just to be sure. Now almost two years have gone, and I am still experiencing a rollercoaster of AHI spreading from 5 to 20 and yet no resolution as to what kind of machine, or treatment is adequate for my condition. It’s all so stressful.

[@gustc765]

Found my almost-new bi-level machine on Craigslist. $475 - a little more than I might have spent for one from out of state, but this one was local so I could meet the person selling it and learn all the details about it. Plus no shipping hassles. I use the Medical Savings Account my state allows (tax-advantaged like a med-flex account) to buy supplies directly from Lanky's sponsor or another online supplier, and always use a discount code. Put my machine permanently in airplane mode and gave up on my sleep consultant. ("I'm not going back!" to make my comment kinda political :^) ) My PCP knows the whole situation and is fine with it. After more than a year of frustration my treatment now is on the right track. Works for me!

[@gustc765]

P.S. I used great information provided by Lanky, Nicko, Vik Veer, and CPAP Friend to gain the understanding necessary to finally take control of my therapy. Thanks, guys!

[@IOSARBX]

TheLankyLefty27, I really enjoyed watching this, so I hit the like button!

[@eromson1]

Aloha from Hawaii, and Mahalo for wearing the shirt!! After two years of navigating the PAP world, I think I have a solution that works for me. But I also have a closet full of failed solutions (anyone want a cloth CPAP mask?). My primary Physician has all but given up on my therapy. She just referred me to a Therapist company. They helped in the beginning. I've had to take control of my own treatment to research and try solutions until I found what works for me. I'm still searching for the "perfect solution." I'm lucky to be able to afford experimentation.

[@KatPhx]

Don't make enough to pay my medical bills with a credit card, make too much to qualify for "food stamp" style insurance. So under your plan I'd be going without a cpap right now

[@Freecpapadvice]

So I have a physician in my area that operates on a cash only system. There are also a few (that refer to my business for home sleep testing) in other states that use the same model. All prices are listed on a "menu" and things are SUPER affordable when compared to paying a monthly premium. Their costs come down significantly when the overhead for things other than lights and labor are eliminated. They also spend much more time with you!

[@beefcreeb96]

Hey Jason... Just out of curiosity, do you know if the ResMed CPAP machine is mechanically different from the ResMed BiLevel machine? Or, are they the same machine with different software/firmware (and the bilevel costs twice as much)? How is the Bilevel machine able to switch between pressures so rapidly and effectively versus the EPR function of the CPAP? I can't seem to find a clear answer to this from an internet search. Thanks!

[@Freecpapadvice]

They are mechanically the same with different firmware. There are 5 guys that I know of that have done a "jailbreak" on their AirSense to get an AirCurve and even one with everything. S/T, ASV and the others....though OSCAR gets super confused. Doing it is not for everyone. All five guys are software engineers. I had two of them try to explain it to me and I was lost. I understood the words they were saying.....but didn't know what those words actually meant!!! 😂

[@beefcreeb96]

@@Freecpapadvice Thanks! Which makes it all the more curious that they don't give everyone a bipap-capable machine to begin with... as if it costs an extra $1,000 for the other firmware. Total scam, IMHO.

[@michaelb.4372]

I'm so accustomed to thinking of my US medical system as being dysfunctional that it's weird to hear it is a problem elsewhere in the world as well.

[@mattkojetin8198]

You know it! I'm finding that, too.

[@ELFrederick]

My Phillips CPAP (2nd Rev) machine died about a month ago. Being that it was a Phillips, I wasn't heartbroken, and it hadn't burned down my house, so win, win. Ever since I've been trying to jump through all the hoops to get a replacement. This included a new sleep study, and some back and forth about the language that Lincare wanted and what the doctor office said. One of the things they wanted was a CPAP tiration study. (What is the difference between looking at the CPAP data in OSCAR and a Titration Study?) Alot of what I've been through has just required ALOT of self-advocacy while trying not to argue, and at the same time sounding intelligent enough not to get laughed at. Well, after all that, I have an AHI of over 90.... (X-OSA baby!) and they are getting me a BiLevel I'll be picking up here in about an hour. It's just been a huge pain in the kiester.

[@WarFox-1]

Does AIR cence ten have a by level feature built in to it?

[@SilentServiceCode]

If you hack the firmware yes, otherwise it's artificially capped at 3cm

[@catherinebeckman3408]

I spent 8 years trying to adjust to cpap without success. Mask after mask etc. Finally my primary suggested I go back to my pulmonologist to address my horrifying fatigue. This time an amazing Nurse Practitioner in Pulmonologist office said we should try a BiPap. What the heck is a bipap?????? Never heard of it. Took two more sleep studies to prove she was correct. The only snag at the moment is mask leakage. So that’s what I’m wrestling with at the moment. COULD NOT BELIEVE THE DIFFERENCE! Since I have not seen my pulmonologist since the switch, I don’t know why he never mentioned bipap - ever - and it was his stellar nurse practitioner who steered me through the process. I don’t have much money but I have Medicare and a supplement so my machine and supplies are covered. But I tell ya, sleep apnea is a weird field…

[@ians-ideas]

I'm hoping I won't need to get a bilevel. My insurance is a pain. But you're absolutely right. There needs to be so much more cpap education on the sleep doc level. I had to explain flow limits to a sleep doctor a couple weeks ago.

[@fracman55]

Hope you got over your covid sir ,it’s nice too see your look well now. .

[@Freecpapadvice]

Covid definitely smacked me around a little, but my immune system had the last laugh.

[@fracman55]

@@Freecpapadvice that’s awesome ,I use ivermectin and hydroxchorine when I got covid ,it kicked in the rear in about 3 days .never took any shots and never .will.no baby diaper masks either .breathing in your own filth is Disgusting . .

[@OBD01]

Just thinking about this raises my blood pressure. Just to many in it for the money instead of the few that just want to help fix the actual problems. I am fortunate at the moment. I have good insurance (but it should be for what it costs) and I at least have a sleep doctor that signed off on replacing my ASV AirCurve10 based on my original 14 year old sleep study. But they still go no further, when I complain I am not getting enough sleep or good sleep ,than AHI is great. That is why I watch your videos that are full of good information and are quite entertaining 😉👏👏

[@manny4491]

The USA system is set up for Efficiency of Coin! They "not doctors or specialist" look at my AHI, time sleeping and move my ass out the door! lol The Insurance company is charged $500 so, I can buy supplies with a script! Joke

[@ahn0x]

bro I agree with what you say but I'm kinda stuck... not sure what more steps I gotta take, still fatigued even after trying all sorts of tweaks over the years... pretty tired on top of, y'know, fatigued.

[@SilentServiceCode]

I learned how to hack the air10 machines to unlock any mode I want. And you should too.

[@largemouthbass355]

Allow Registered Sleep Techs to give out the PAP devices, rather than a Respiratory Therapist because 95% of the time they do not know how to properly due a mask fit or troubleshoot mask fit issues which are a huge issue with pap compliance and tolerance

[@John-viheavyequipment]

If we weren’t taxed so high and there was a strong economy and people had the choice people could have more money and when they where sick they’d ride into town and see there doctor and pay for the services when they left and company’s could decide to give credit to people to pay them back if they wanted or didn’t with to

[@Jeremy-yr8yg]

I’ve been feeling kind of short of breath since I started sleeping with my cpap about a week ago? Any ideas?

[@davidmulford3828]

I have great insurance (KP in NorCal). Both my wife and daughter are RNs there, so I know there are many dedicated physicians that want to do the right thing. I think most sleep apnea physicians are brainwashed into believing what the device manufacturers tell them. They just want to hand you an APAP set at 5-20 and let the machine handle it. Their cult is just the opposite of yours. 😵‍💫 I was ready to toss my AirSense 11 out the window until I found your channel and started getting up to speed on what the right approach should be.

[@BattlestarCanada]

We need an older lanky character that has utilize some instruments to get around, this character would look a little bit like andy rooney, talk like walter kronkite and have the humor of the CHAI-RO-PRACT-OR. It would be G-rated but would focus their energy repeating all the key points many times, not to the point of anoyance but just to make sure they too understand what they are saying. They should emulate the patient's perspective on CPAP and the gaslighting we all recieve in medical care, while lego man would be the medical 'professional' demonstrating "WHAT NOT TO DO" in a whimsical manner that makes fun of the right things... Maybe have a funny throw to his segments. Would be the perfect accoutrement to the Lanky family and cult.

[@pbrian9527]

Since I had an AXG consultation, do I get free cult membership?

[@Freecpapadvice]

😂

[@billm.2677]

Doctors: You are replaceable. Resistance is futile, you will comply with “The Standard of Care”. Patients: Don’t worry your sleep machine is telephoning the “Bean Counters” monthly to help improve their profitability. After 4 on-site sleep studies I got a “Complex Sleep Apnea” diagnosis. I soon found out I could buy an ASV for less money direct than my insurance co-pay but the my doctor was required to order the machine from the approved source. Later, when I asked my doctor if it was okay to go in and drop pressure a bit, he said it was fine…then the equipment provider called into my machine and changed it back. I don’t know if the newer machines let you disable “Big Brother’s” phone access to YOUR machine. Resistance is futile, you will comply.

[@ederdmann7347]

Long time cult member here checking in. Where are the free doughnuts.😜

[@snospmoht3252]

The gate keeping on bi-levels is strange. The only thing I can figure is that the manufacturers have geared up to make way more cpap/apap machines than bi-levels thus that's what they push with the doctors and dmes cause that's what they have. Perhaps the profit margin on bi-levels is slimmer. Thus that's what's prescribed most often. Sorta like if you're a hammer then all you see are nails. Maybe they're told cpap/apap are readily available and almost a one step set it and forget it solution. Perhaps they don't think the benefits of a bi-level over a cpap/apap are significant enough to "spend" the coinage of their limited time on after a patient has been prescribed the cpap/apap. It is indeed a mystery. I have no suggestions to offer on fixing things. Wish I did. But unfortunately I have apparently been kicked out of the cult for TWO reasons now. Sigh. 🤭 Guess I'll just keep watching and making use of the information until you get enough cult members to properly shun me. 🖖

[@davidpeterzell789]

THAT is what you do on vacation??!! I mean, isn't SCUBA just like PAP except that the humidification tank is much much (much) bigger? So when you go on vacation, you actually crank UP the pressure? Dave who is pissed he hasn't done SCUBA in ages and is currently freezing in Aberdeen, Scotland.

[@karenvalentine484]

I’m one of your cult members from way back Jason

[@Freecpapadvice]

😂 I appreciate you sticking around!

[@kchortu]

I buy most of my equipment on the secondary market. I will say medicine in all forms is mired by the hesitance to make decisive actions and to LISTEN to the patient. Non sleep example it takes me forever to pee I know something is wrong but im 42 so the dr wants to blame it on benedryl... ok I will try it BUT they want me to try letting it coast for 6 months before checking back in. I am thinking DUDE I am going bald and have a thick bushy beard those are 2 signs that I am dumping DHT which is going to enlarge and harden my prostate... well you are young... yeah thats why I am here as its not normal. Second one hey it hurts when I eat fatty foods, well dont eat fatty foods that will be 150$ sorry that is not an option, well fine we will get you an ultrasound, at the ultrasound clinic mid attack your galbladder is going crazy we cant get a scan of it come back later , that will be 150$ come back later looks normal that will be 150$ go to the gastro again well that looked normal great because I have been on this planet for over 40 years and this is new, would you like me to order a ct scan yes great that will be 150$. Get the ct scan there's a $200 copay fine ok ... still looks normal... here is some pain meds kthanksbye and that will be $150. So that is why I just shop face book marketplace and cpap swap groups I got an s10 for $200 and an s11 for $120. I get masks parts and supplies from cpap swap groups websites and amazon. When the sleep doctor finally gave me a prescription they referred me to a dme and they wanted about 1500$ over the course of a year for the machine...FFS its cheaper to just buy one with a credit card online and make payments that way. Dont get me started on how much they charge for hoses and masks. While I dont think socialized medicine is going to make everything better getting profit out of the equation is better for everyone. BUT there wont be innovation.... really have you met innovators they dont do it out of profit and usually get hostilely taken over once they have a successful thing going on. There will be death panels of government stooges yeah because that would be worse than the panels of cooperate stooges making those same choices. Whos going to pay for it JFC you think you are not paying for it right now? The resource pool is exactly the same the only question is who has access and who has a hand in the pot.

[@roselotusmystic]

NitroxSCUBA 😻 WithOut a APAP 'Mask' 😹 👍

[@cebruthius]

Remember! Barry Krakow MD started this cult first 😉

[@jamesbruzgis9476]

#CpapLegend

[@cebruthius]

Why are you sitting on your wife's pilates thing 😁

[@Rob-ob3sh]

Lazy doctors