Ordered New Machine and Thank you

[chrisgee]

Hello,

It's been awhile - a little over 7 years since this forum helped me out as a new CPAP user and I see it's still a great resource - I came home last week after a month of Traveling around in our RV to see what many of you have been going through - the recall from Phillips. Panic ensued.

After reading a ton of your posts - thank you so much to everyone for sharing their experiences here - and talking to my son who just received his new Airsense 10 Autoset, I settled on that machine for myself, but a phone call to my insurer this morning confirmed what many of the posts I read said - my DME would likely NOT have the machine to send me, in fact they told me A**** was not sending out machines right now? (I know, terrible DME but it's the only one near me and they've been fine for supplies for the last 7 years after their initial abuse of my credit card way back) Now, I'm not sure about this following part, but I tend to appreciate the honesty of it - the person I spoke to advised me to outright purchase a machine and then deal with the process of getting some reimbursement after the fact. Which is what I had already come to terms with having to do, but someone confirming that was going to be my reality helped. I saw my doctor this morning - she received the physicians letter I believe just last week - and her statement to me was - if you only have to use that machine for a day or two while waiting for a new one ok, but after that she was really not wanting me to use the phillips at all. She wanted me to call A**** and see if they did have machine, but I told her - pre approval, then waiting for them to get their act together, we were probably looking at a time suck. She agreed that the most important thing was for me to get a safe machine.

I had been on the cpap.com site this morning - and saw it showed the Airsense could ship by 4pm today so as soon as I arrived home from my appointment, I called. I was really bracing myself to hear it was out of stock, that it couldn't be set with a fixed pressure (which was one of the nagging questions I had, I don't have an auto machine, but liked that I could possibly have that in my future) or some other roadblock that would prevent me from getting a safe machine. Well, suffice to say I feel 100% better now, I was assured it was in stock, ready to ship, could be set to my pressure and if and when I wanted they could help me set the auto features, and voila it will be on the way today. I can't say enough about the professional way they handled my call, how they waited for me to take a photo of my R and email it and the time the spent going over everything with me.

I'm so relieved and although I know I'll probably have a heck of a fight on my hands trying to get my insurer to cover the new machine, I have no regrets because I'll be able to sleep safely now. I'm torn about opening the old machine to see the state of the foam - I'm not sure I really want to know. I've registered for the recall and I'm expecting it to take some time to figure this all out and make it right. Although I'm sure there was probably something I could have done with my insurer, I'm sure it would have taken more time than I think was safe and I feel good about my decision. I just want to say - thank you to everyone for sharing your experiences here - reading what you had to say was helpful and comforting and while I felt a lot of anxiety about it all, as I'm sure many of you feel, this forum really helped.

[zonker]

Hello,
I just want to say - thank you to everyone for sharing your experiences here - reading what you had to say was helpful and comforting and while I felt a lot of anxiety about it all, as I'm sure many of you feel, this forum really helped.

thank you very much for writing all of this. it makes me feel good to be part of this forum and know what a help it really is.

if you need any help with the new machine, please feel free to ask questions.

good luck!

[chrisgee]

Thank you. I think the biggest questions on my mind right now are - do I keep it at my fixed pressure or try the auto function and where do I even start with that - my study was done over 7 years ago and my pressure has been 11cm. The machine is supposed to arrive today and they didn't set it they way they should have so I'll have to go into the clinical menu and do that, but that doesn't seem difficult. Any tips on how I should have EPR set would be helpful as I'm used to the relief on the Phillips machine. I don't think I'll need any ramp time - I did away with that so long ago - using it now just makes me feel like I can't breathe. I'll just be enormously relieved to have a machine that I don't think is poisoning me anymore.

[Julie]

Well, can you set it for e.g. 6-7 as the min. pressure (which always can change at a later time), and 20 max (usual for that)? You're free to try EPR wherever it seems to work best for you and I wouldn't worry about the ramp either. Try each setting for a few nights and see how things go, and if you need to move up the min. setting in time you can always do it yourself... and keep new Q's. etc. in this thread so we can see what's what as you go.

[Pugsy]

Actually for someone being on cpap for 7 years I would suggest not deviating too much from what they have been using at least for a little while.
No big changes because a big change might cause the person to be uncomfortable and not be able to sleep well.

Using EPR or not....play with it while awake...all settings including off and just go with what feels the best to you. Whatever feels comfortable and natural no matter what the setting.

While the 11 cm fixed pressure you have been using for so long is likely more than you need when using auto adjusting (apap) mode...if we go making huge changes and lowering the starting minimum pressure you might find that you feel air starved and have trouble in the comfort department. That's counter productive...we need to sleep first and foremost for this therapy to be successful.

So play with the machine while awake and play with various settings to see where your comfort level is.
It won't hurt a thing to simply stay in fixed cpap mode for a little while and use EPR with the setting of 11.
If you do want to try auto adjusting mode...don't drop that 11 cm usual pressure all that much right off the bat if you find you aren't comfortable with it. Start with maybe a minimum of 9 cm starting and EPR that you like and feels good with max up around 14 cm. Just so the machine doesn't go doing something wild that you aren't used to. Evaluate the results to see if you need to adjust the settings.

Since you are used to 11 cm fixed and no ramp with the little bit of exhale relief that Respironics machines offer be very careful if you lower the starting pressure very much. Be mindful that your body is used to this setting and if you vary it too much you might find it uncomfortable. That's why I say play with it while awake first and learn what is comfortable for you and what isn't. You can always adjust downwards more slowly to give your body a chance to be happy with the new settings. There is no rush to jump into the deep end immediately just because you can.

[josearturodominguez]

Were was it that you found your machine? Ive been trying to find one

[chrisgee]

Well, can you set it for e.g. 6-7 as the min. pressure (which always can change at a later time), and 20 max (usual for that)? You're free to try EPR wherever it seems to work best for you and I wouldn't worry about the ramp either. Try each setting for a few nights and see how things go, and if you need to move up the min. setting in time you can always do it yourself... and keep new Q's. etc. in this thread so we can see what's what as you go.

Thank you! I'm going to keep it fixed for now, but it's good to know this info. I did turn the ramp off and the humidifier down, adjusted the EPR.

[chrisgee]

Actually for someone being on cpap for 7 years I would suggest not deviating too much from what they have been using at least for a little while.
No big changes because a big change might cause the person to be uncomfortable and not be able to sleep well.

Using EPR or not....play with it while awake...all settings including off and just go with what feels the best to you. Whatever feels comfortable and natural no matter what the setting.

While the 11 cm fixed pressure you have been using for so long is likely more than you need when using auto adjusting (apap) mode...if we go making huge changes and lowering the starting minimum pressure you might find that you feel air starved and have trouble in the comfort department. That's counter productive...we need to sleep first and foremost for this therapy to be successful.

So play with the machine while awake and play with various settings to see where your comfort level is.
It won't hurt a thing to simply stay in fixed cpap mode for a little while and use EPR with the setting of 11.
If you do want to try auto adjusting mode...don't drop that 11 cm usual pressure all that much right off the bat if you find you aren't comfortable with it. Start with maybe a minimum of 9 cm starting and EPR that you like and feels good with max up around 14 cm. Just so the machine doesn't go doing something wild that you aren't used to. Evaluate the results to see if you need to adjust the settings.

Since you are used to 11 cm fixed and no ramp with the little bit of exhale relief that Respironics machines offer be very careful if you lower the starting pressure very much. Be mindful that your body is used to this setting and if you vary it too much you might find it uncomfortable. That's why I say play with it while awake first and learn what is comfortable for you and what isn't. You can always adjust downwards more slowly to give your body a chance to be happy with the new settings. There is no rush to jump into the deep end immediately just because you can.

Thank you very much - I did play around with the EPR and have it set at 3 right now (I hope I have that the right way around - I'm guessing the higher number is more relief?) - I'll see how tonight goes but the lower settings sort of made me feel more breathless. And I agree - I've been at 11 so long, I think your advice is spot on to keep things that way for the time being. In any case, I'm kicking myself for waiting this long to get a new machine anyway - it's so much quieter than my respironics and well, there's that recall thing that helps the peace of mind.

[chrisgee]

Were was it that you found your machine? Ive been trying to find one

I found it at cpap.com - it looked like they were still in stock today. I had to pay out of pocket, but I fully intend to get that sorted out with my insurance company as they're the ones that told me to go this route. Good luck - I hope you find a machine.

[chrisgee]

Just wanted to say I had a wonderful first night with this Airsense 10 - So quiet and I love the auto Start feature. I was up way to early, but that's not because of the machine, and despite that I had some really good rest. Also, for the first time in I can't remember, I didn't wake up coughing and with runny eyes. I'm wondering if that was from the recalled machine and whatever stuff I had no idea that I was breathing in? Too soon for me to conclude, but I'll definitely make a note of it.

I really expected much more of an adjustment to this machine and I'm very pleasantly surprised it went so well.

[packitin]

My experience was similar to yours.
The recall sent me into a "tail spin" 6 weeks ago. I immediately made an appt with my sleep doc who prescribed a Vauto Aircurve bilevel, and he wrote the pressures on it.

With prescription in hand, I was not able to get a machine anywhere in this city, because of the "5 year rule", even though medicare told me (3 times) that the rule was waived during recall.
I talked to a reginal director of my DME company, and she said that they were not issuing those machines, but were waiting to see what Philips was planning to do, since the ball was in their court.

The latest thing I've heard is that Philips is planning to have the machines repaired with new foam, but they will take each case, evaluate it (my DS bipap has over 9200 hrs) and if its beyond repair, to issue a new machine. The time factor, from what I have been able to gather is one year, or possibly more. This scared me beyond measure - my 5 years will be over in mid-January, and I don't think I can wait that long, using a defective machine. I was so upset that I asked for a chest x-ray, which was done. So far, I don't seem to have any effects, but I'm worried about the long term effects, since I am 82 years old.

So, the only choice I had, even though, being retired, I have to watch my budget since we have a fixed income, was to purchase the machine myself and say "to heck with Philips" and the DMEs. I don't need them anymore. I found one at The Cpap Shop out of NJ, and just received it yesterday. So last night was my first night using a safe machine and my AHI was .83, and it is so very quiet. But the best things is that my "mental health" was, for the first time in 6 weeks, very good. At my age, that is what is most important when one goes to bed at night and wondering if they are benefitting from the machine - that is, if they are getting "good air".

Good luck on using your Airsense 10. I hope it serves you well. I'm just thankful that I am breathing "good air".

Jay

[chrisgee]

Thank you for sharing that. I was told by my insurer that my DME - Apria, wasn't issuing machines either. I'm appalled by the fact that they didn't even contact me - the only reason I found out was because I started researching new machines because I was overdue for a new one. When I told my insurer it wasn't a replacement, that I was entitled to a new machine, they said - they're still not issuing machines. So basically, same as you, I prioritized my health over their policy. I'll fight with them, hopefully they'll cover it because I did what they advised me to do - but how ridiculous that they're all sitting back while Phillips is working on their plan? They all got their money - they made us all go through a years worth of compliance and we'd have to do that all over again while they pay the higher rental to the DME - it's just mind-boggling and so irresponsible.

Sorry - didn't mean to rant.

In any case - I'm glad I was able to purchase a machine outright - I'm in NJ and we don't even have a local DME, I would have had to travel 40 minutes into PA - which is why I put it off because of covid last year. I anticipate if they don't cover the machine, they won't cover the supplies and I'll be out of pocket for that too, but at least I'm breathing and sleeping safer. I already love this machine - it's so much quieter and that in itself helps for better sleep. I hope we are given the choice between a replace or some cost reimbursement, I'd choose the reimbursement because I won't go back to a phillips machine.

Good luck to you to, Jay!

[packitin]

I'm with you on that.

They promised me a new Resmed machine (what I was prescribed) in January, when my 5 years are over. So, I'll use the machine I bought for a backup. My Dreamstation as well as my backup, a system one 750P were both in the recall. I was very upset and saw my doctor immediately, or as soon as I could. I even asked for and received a lung x-ray. I've had several tests done to see what damage I received. All I have found so far is a cyst on one of my kidneys. No, I'm not sure if the machine did it or not.

Like you, I don't think I will ever use a Philips again. I was so desperate after the recall that I even looked deeply into my old closet and got out my S8 Resmed, the first machine I ever owned from way back in 2005. It was better than nothing and it still worked, thank goodness.

After haggling about 6 weeks with medicare and my DME, I gave up and bought a new machine, using my limited savings. If there is anything positive, at least I don't have to worry about any kind of compliance such as 4hr/night, and so forth. I can make my own decisions concerning my condition, and I don't think I'll even use the DME for equipment supplies. For now, anyway, I am on my own, and I like it that way. I may not even get a new machine from my DME; my attitude now is, why do I need them. They did not come through in a most discombobulating situation of the worst sort, so how can they be depended on in the future?

Its sort of like my hearing aids, which are very expensive. I paid a lot for them, and now they are 5.5 years old, so I'll need a new pair soon. And Medicare does not pay for them either. My mistake when I was a young squirt was that I joined the Army Reserve, spent 6 mos. active, and 5.5 years in reserve. The reason I didn't join for 2 yrs. was because I wanted to finish college, and that was the most convenient way. But since I got out of active duty a few days before the 6 mos ended, I am not eligible for free cpap machines as other veterans are. Dang! Since I almost had to go to Cuba (remember the Cuban crisis), you'd think I wouldn't be penalized like that.

So, it is what it is . (whatever that means)

[chrisgee]

I think we both made a good decision - taking charges of our cpap therapy and doing what's best for US. I'll be contacting my insurer next week and we'll see where that goes, but I expect it's not going to be easy.

Take good care!

[josearturodominguez]

Were was it that you found your machine? Ive been trying to find one

I found it at cpap.com - it looked like they were still in stock today. I had to pay out of pocket, but I fully intend to get that sorted out with my insurance company as they're the ones that told me to go this route. Good luck - I hope you find a machine.

How much was your machine?