New Machine Reccomendations

[hueyville]

As most of you know I have been wrestling with complex apnea for some time. Diagnosed by my primary 3 years ago we got me a Respironics System 1 cpap/cflex bipap/biflex machine and he referred me to a sleep specialist. 1st sleep doc put me in his lab and at midnight they sent me home and next day his office cancelled my follow up visit. 2nd doctor did about the same. They did at least finish my lab titration and his P.A. met with me giving me my results and reccomended a pressure for my machine but said my case was too complex for their lab eqhipment anx reccomended I look for sleep specialists in Atlanta and my primary could do that as well as them so they were declining me as a patient. 3rd local sleep doctor looked at my case anx said he agreed I needed to go to Emory and start from their. My primary got a local sleep doctor who retired 2 years ago to consult and he looked my files over, told my primary cpap nor bipap was going to help me, reccomended how to set up the machine till I got to a big city lab.

Meanwhile my wife had been diagnosed with a rare form of osteoporosis and her treatment became our priority. She twisted wrong getting out of bed in Jan and fell to the floor paralyzed from the waist down. Lucked out and one of the top osteoporosis doctors and research clinics in the country is local to us. He bas been treating her for 2.5 years. Since she did not get any help.crom FDA approved drugs helped. He got her into a research program out of Switzerland which provided an experimental med that over a 1 year period her bone density went up 14% and he put her on fosemax. After her fall he rescaned her and 10% of her new bone mass had already gone away. Bd got her in a 6 month program where she held steady and now she takes Forto every month. At 1st it was 2,400 a month but as it has gained popularity it has dropped to $1,700 per month. Also she has broken 12 of 13 bones this year. We saw 3 spine surgeons that all said they cannot operate as any survery would not heal as no bone can grow back to support any hardware or bone grafts. Thus with her in a wheel chair for 6 months and doctors 3 days a week there has been no time to address my apnea.

In the meantime we had a new neurologist move to town and build a new sleep lab which is top line. Nicer than the 3 previous by 100%. Plus when he saw my file he still booked me then spent 90 minutes during my 1st visit reviewing my machine data including sleepyhead which my other docs freaked out at just the idea I was reviewing my own data and changing prescriptions without a doctors order. The new doctor said he wanted to start over from the beginning and to use whatever settings I liked till we got into the lab. So now in 3 months I had my 4th visit to sleep lab in 3 months last night. Last visit wasw bipap with backup rate which I did better with but not stunning. Besides my machine will not do back up rates. So last night was an ASV study. They put me with their best tech from day 1 and this morning said it worked really well from his perspective. I woke felling better than in quite some time. Tbough I took an Ambien as most nights, last night is the 1st night in a decade tbat I went to sleep in just a few minutes and slept 7 hours without waking a single time, didnt toss or turn, no mask discomfort or waking at all. Have an appointment with doctor tomorrow. Going on what he said my last 2 appointments my bet is that tomorrow I will get a Respironics machine that does bipap/biflex with a back up rate and ASV. Knowing those parameters what machines do I want to steer clear of and what do I want to ask for? I am sure he is going to do this then let me run the thing for a few months and see how it goes. He is a Respironics guy but if I need to fight cor something else let me know. If we go Respironics what is their best machine that have the two features I need. ASV and biflex with backup rate...

[Pugsy]

There's really not much to choose from with your needs.
If you stick with Respironics line...this one is what you will need
https://www.cpap.com/productpage/pr-60- ... anced.html it is the lasted...model 960 and has the heated hose.
There is a model 950 which is pretty much identical but without the heated hose...it was discontinued when the 960 was released and unless a DME has one sitting on the shelf in the back room somewhere (not something normally stocked because of expense) they will likely order the new one...and I would probably request the 960 if it were me. It's the latest.
Don't let anyone pawn the older version of this model on you...it looks like this.
https://www.cpap.com/productpage/remsta ... chine.html
The model 950 replaced it.

ResMed has one that pretty much does the same thing but if your doctor is a Respironics person then he likely would prefer the PR S1 model anyway. It's the top of the line so you aren't having to settle for anything for sure.
The ASV market is extremely limited. If you get the model 960 Sleepyhead doesn't yet work with it and you would need Encore Pro 2.12 if you want to see the detailed data. Did I give you that link already? If I didn't just send me a note and I will get it to you.

[hueyville]

You said would send link when or if the need arises. Lets see what he does tomorrow. If he writes the script for that machine will shout out. Thanx.

[archangle]

Some people are different, but the basic answer is "complex sleep apnea = ASV". You might tinker with CPAP and bilevel to keep insurance happy, and you might luck out.

The anwer is sort of "get an ASV" and then try and figure out how to tune it to make it work for you. Your brain and body may also take some time to adapt to the ASV, so one night in the lab may not do the trick for figuring out how to set it up.

[hueyville]

Archangle,
Have spent 2.5 years going from cpap to bipap. cflex and biflex and every variation of the two. Issue has been finding a sleep doctor willing to treat me. Had mh ASV titration last night and in doctors office now to get the results.

[hueyville]

Pugsy,
Looks like I will be needing that link. Shortest visit I have had with the new sleep doctor. Basically he said Sunday night was the best sleep numbers I have posted in years on the ASV. I told him it was the 1st night in years that I did not wake up a single time and when they woke me after 7 hours sleep I was stunned an entire night had passed. Normally I wake a dozen times a night. Said he sent a script to my favorite local DME this morning for the Respironics 960 with heated hose and a new Quattro fx mask like I use to go with it. I still have one mask still NIB and the one I am using is only 3 months old. So I will be fat on masks and a new machine. Now to start looking for a good used ASV machine for a backup. I would rather not move the new machine once set up and have a spare for travel. In the meantime I may use the biflex machine for travel and watching late night television. Better than nothing and does not put new machine at risk. After almost 3 years of working with sleep doctors and over a decade previous without a decent nights sleep I am exicited about the possibility of actually sleeping for an entire night. He said my night is still not completely scored but based on my responses Monday morning and a quick view of the numbers he went ahead and got the papers moving hoping to get me a machine before the end of the week. As much as I have disliked cpap and bipap its odd being excited now about tbe new machine but if ASV does at home what it did in lab I may be able to wake up in the morning not feeling more tired than when I laid down.

[hueyville]

When DME submitted approval to BC/BS for the Respironics 960 with heated hose and a Quattro Air mask the insurance company went into vapor lock for first time in over 20 years of having policy. They bowed up on the DME and said they had to talk to my doctor first. So to get the insurance doctor and my doctor on the phone at the same time was a bit of a cballange. Once they discussed my case and my info from my machine and the last 3 sleep studies hit the insurance docs desk he approved immediately. Still were a few extra forms that had to move back and forth between the three entities but a little while ago I got the call my machine was in and my appointment with the tech is 10:30 Wednesday. So only two more nights on bipap.

Got the automated call two weeks ago that I was due for new mask, hose and filters. Told my DME to hold till we see what happens with the new machine request. My tech told me today that due to my timing when I come in Wednesday not only is the 960 with the heated hose and my Quattro Air with headgear. He had two spare masks, spare heated hose and eight complete filter sets. Since never had to wait, I got nervous for a while but all said and done its all good. Since my other two stcking zupplies were timely I have a reasonably new mask on my current machine, two new masks still sealed in original packaging and o.e sith headgear and two without waiting for me. So each machine will have headgear and mask along with four ndw masks in my backup box. I just counted eight sets of filters for the biflex machine and will get eight sets for the 960 when I pick kt up. Only. Thing I am short is the proprietary software for the 960 as its not compatable with sleepyhead. So download or purchse I will not sweat that overly.

All I know is the night in the lab on the ASV machine was best night sleep in years so I am excited. Going to put the Respironics System One biflex/bipap auto next to my recliner. While not perfect will be better than nothing when fall asleep during a movie. Unless someone can tell me its a huge mistake will use the bipap auto for my travel machine so no risk damage to ASV. No, it does not work as well as ASV for my flavor of complex apnea after almost three years dialing in the settings at seven sleep studies plus last six months of real work using sleepyhead and Encore viewer most nights are reasonable, some good and the aliens only show up two nights per week but now have the alarms on blood oxymeter, blood pressure cuff and tbe machine itself that if I get into real trouble one or more wakes me up and I can sit up, take proper meds to help and sitting up for an hour seems to do a hard reset on my brain. Doc says in three years my plan will buy me a replacement ASV without issues we had tbis time. I am only due a new machine every three and since totally new script they had to comply but if it lasts like he expects it will make a good backup for years after due for new one. Thanx for moral support and educating me the past few months especially on complex apnea how to deal with it all.

[DoriC]

I think we're all excited for you! The one thing you didn't say was how you felt the next day after that great night's sleep in the lab?

[jwerley]

Huey.............I am very happy for you! I too went through years (8) of horrible sleep, never feeling better. I now have a new ASV. I am a little concerned about your wanting to use other machines, as adjusting to breathing and the alogrythms of the ASV takes a while....sometimes months. I could be wrong but I would not want to mess that up by using a different machine during the day. Just food for thought.

Janice

[hueyville]

First sentence of last post said I felt better day after my ASV titration than years.

[hueyville]

Just left DME with new Respironics System One BiPAP autoSV Advanced and heated hose. Also two new Resmed Quattro Air masks and 6 complete sets filters. Said BC/BS had pre-approved entire deal as straight purchase and no compliance checks are required. Say due past history and files from sleep doc the insurance doctor who talked personally with my sleep doctor realized that the only nights my previous machine showed no use in six months were nights in sleep lab. Insurance doctor said to my doctor that based on that and their conversation in which be realized I was a serious case of complex apnea, knew it and already proven that I take my machine use as top priority there was no sense in requiring a bunch of extra effort and paperwork on their behalf. Darn decent, they are writing the full check straight up and trusting me to be responsible.

Machine is programmed and in one week go into see sleep doctor to review data and my feelings. If needed.will tweak settings and then follow up in another week. Scbeded a sleep lab in three weeks using data from machine to verify where we land with settings based on machines data is solid and does not need additional adjustment. Unless it all falls apart and have been fed.misinformation from insurance rep, DME and doctor I feel like I got the best possible treatment even though it took three weeks crom writing of prescription to reciept of machine.

Since my Respironics Encore Viewer software nor does sleepyhead support this machine now all I have to do is acquire the proper software for it. The tech said I can download SleepMapper app for my Android phone and access it from my phone whicb I will probably do but still want the software for my computer. Now if sleeping with this thing goes just half as well as in the lab I will be one happy camper. Link to software anyone???

[Pugsy]

Link to software anyone???

Which model?
950 or 960?

Also what operating system on your computer?

[Pugsy]

SleepMapper is next to useless.
Gross AHI and time in large leak only along with hours used...big whoopie

[bwexler]

For software try a PM to Pugsy. She has been known to work miracles.

[hueyville]

It is a 960P with firmware revision 2.0. 0 hours on blower so no display pawned.on me.