Here's my plan to get a better machine - advice welcome!

tangents · Post by **tangents** » Thu Mar 29, 2007 7:00 am

I received so much good advice on my last post "Advice on getting a better machine from my DME", and I want to say THANK YOU to the forum

I have an appointment with my sleep doctor next Thursday, and an appointment with my internist (who referred me to the sleep doc) tomorrow. I made sure that my internist received copies of both of my sleep studies. I'm going to request that my internist:
1. Take over my treatment, or recommend a different doctor (one that monitors progress using data)
2. Write me a prescription for an APAP with data logging capability

I know he will not write this script without good rationale, so I will tell him the following reasons for getting a better machine:
I'm every bit as tired, if not more so, than I was before CPAP.
I have no way of knowing if my apnea and hypopnia events are still happening.
I know I have some mask leakage, and need to know if it is interferring with the therapy.
I need to know if I am mouth breathing - I wake up about every 3 nights with dry mouth.
I began a diet in January, and fully intend to lose weight this year (I should be down about 15 lbs from my last visit with him as proof of my intentions.) I have no intention of repeating a sleep study - EVER - so I need data to monitor changes to my pressure.

As to why I don't want the sleep doctor to manage my condition, I will tell him:
He never discussed machine options with me - just ordered me one
He never discussed mask options with me - just asked what I used for titration study
My very first follow up appointment was scheduled for six weeks! later
His technician told me that that's the ONLY machine they STOCK
His technician (pretended not to) didn't know of the data logging machine choices
IMHO, there's a huge conflict of interest when the doctor is also the DME supplier
My insurance was billed $1750 for a $400 machine/humidifier

So, assuming my internist is appalled when I tell him this, and agrees to write me a script or send me to a new doctor, I will still keep my appointment with Dr. Quack next week. I will tell him my reasons for wanting a data logging CPAP, and give him a chance to do the right thing. (Before I see him, I will get my original prescription, and a copy of my titration study, since I currently don't have either.) I don't want to lie and say that I'm swallowing air, because I'm not and I'm a HORRIBLE liar, but I feel that I have justification anyway for wanting the APAP.

Have I left anything out? You guys are so smart, and so kind to take time out to help people. I'm hoping that I will be able to share my success story with other newbies in the future if their sleep doctors take advantage of them. Thanks a million, Cathy

muld00n · Post by **muld00n** » Thu Mar 29, 2007 9:17 am

tangents wrote: I know he will not write this script without good rationale, so I will tell him the following reasons for getting a better machine:
I'm every bit as tired, if not more so, than I was before CPAP.
I have no way of knowing if my apnea and hypopnia events are still happening.
I know I have some mask leakage, and need to know if it is interferring with the therapy.
I need to know if I am mouth breathing - I wake up about every 3 nights with dry mouth.
I began a diet in January, and fully intend to lose weight this year (I should be down about 15 lbs from my last visit with him as proof of my intentions.) I have no intention of repeating a sleep study - EVER - so I need data to monitor changes to my pressure.

Good reasons all. If the doctor is really concerned for your health and well being he shoud write the script.

Be sure and get the word CFLEX on the prescription if you want that feature, and you will probably have to suggest a pressure range (i.e. 9 - 13 [insert yours here]) if you want an auto machine.

Good luck.
Steve

tangents · Post by **tangents** » Thu Mar 29, 2007 9:33 am

Isn't C-Flex specific to Respironics? I was thinking of getting either the M Series Auto C-Flex or the GoodKnight 420E Auto. I'd like the prescription to be as flexible as possible since it's good for a lifetime.

Thanks, Cathy

TXKajun · Post by **TXKajun** » Thu Mar 29, 2007 11:23 am

Cathy, there is a lot of vocal support for the M series machines, I think because of the C-Flex option. I've been on a 420E for a couple of years now and love it. The software is reasonable in cost, easy to operate and doesn't drop data. The 420E itself is compact, quiet and travels well (I travel by air about once a month).

I ordered my setup as a bundle from cpap.com for a really reasonable price. It arrived in a couple of days, set up easily, had ALL manuals and I've been using it every night since.

Good luck. It sounds like you're going to make the right choice for you. Good job!

Kajun

Guest · Post by **Guest** » Thu Mar 29, 2007 12:12 pm

This is the exact same thing I am doing tomorrow... going to my regular doc to get him to write a new prescription for an auto machine with data capability. I've only been on my cpap for a few weeks, but I am not getting better. Today I actually had to cancel and appointment that was an hour away because I was falling asleep at the wheel of my car. I actually had to pull over and sleep for two hours. I'm surprised a cop didn't come to my window and check me for drunk driving considering I was on the side of the road, car running, fast asleep.

My reasons are similar to yours. The sleep study, parts 1 and 2, was horrible for me, and I can't believe it was in any way accurate for my pressure. I am still having apnea events, which I know from waking up with a start gasping for air. The tiredness hasn't subsided at all. And I have no data regarding my therapy.

Since I have only had the machine a couple of weeks, I'm hoping it won't be an issue to get another one... I want the remstar m series auto with c-flex and data card. I deserve the right setup.

Thanks for your list, I will use it too.

Stacey

mlim650 · Post by **mlim650** » Thu Mar 29, 2007 12:28 pm

I got my PB 420E and Silverlining software about a week ago. I like it for it's compact size for travel and it's very quiet. The software is easy to setup and use.

Note that the 420E do not have exhale relief feature (like C-flex) but I've no problem with that. My pressure range is 5-10. Also the 420E do not have a card to store data, Silverlining comes with a cable to connect to your computer's serial port. If you don't have a serial port like me, you will need a serial to USB cable to interface with your PC.

Good luck!

muld00n · Post by **muld00n** » Thu Mar 29, 2007 12:51 pm

tangents wrote:Isn't C-Flex specific to Respironics? I was thinking of getting either the M Series Auto C-Flex or the GoodKnight 420E Auto. I'd like the prescription to be as flexible as possible since it's good for a lifetime.

Thanks, Cathy

You are right Cathy. I was just suggesting that IF you want that feature (CFLEX) have the Doctor put it on the prescription, otherwise it's not necessary.

Steve

tangents · Post by **tangents** » Thu Mar 29, 2007 12:54 pm

Can the serial to USB cable be used to download to a memory stlck? My computer is upstairs, my bedroom is downstairs.

muld00n · Post by **muld00n** » Thu Mar 29, 2007 1:09 pm

tangents wrote:Can the serial to USB cable be used to download to a memory stlck? My computer is upstairs, my bedroom is downstairs.

The Respironics machine will have a Smart Card that can be taken out of the machine and taken to your computer. I'm not sure how the Puritan Bennet machine provides data.

Gerald · Post by **Gerald** » Thu Mar 29, 2007 1:29 pm

Cathy.....

I suggest that you go at this problem from another direction.

By now, you should know exactly what equipment you want and need in order to manage your own treatment competently.

Call CPAP.COM and ask them exactly how the prescription should read so that they can sell you the exact equipment you want.

Your GP doesn't want to have to write a prescription for something he isn't familiar with....that's why he sent you to Dr. Quack in the first place.

If you hand him a copy of exactly the prescription you want, I predict he'll do it in a flash.

After I finished with my (2) horrible sleep tests, I knew what I needed. CPAP.COM taught what they had to have (prescription wording) in order to sell me what I wanted. I typed out my own prescription....handed it to my own Dr. Quack...got a funny look.....and he delivered the prescription I needed the next day.

After just a few times of talking with me, my Dr. Quack and his aides realized that I wasn't one of their normally "bovinely compliant" victims. They realized that it wasn't worth having to endure the "bitchin' and squawking" they were going to hear if they tried to screw me around.
I was always very nice....but they "KNEW".

My Dr. Quack didn't even bother trying to schedule a "follow-up"....he realized that he'd already extracted as much from me as he was going to get.

On my next visit to my Dr. GP, he was stunned and blown away by the written and graphic reports I showed to him....demonstrating that I was doing fantastically well......and that I had my own treatment program under perfect control. He (my Dr. GP) will (in the future) write any prescription I need for whatever equipment I want to buy.

Finally.....I suggest that you ask for C-Flex (or other exhale relief feature) to be included in your prescription. Ask CPAP.COM how to word that request. Once you have an "All-Inclusive" prescription, you can then get exactly what you want.

The prescription can be for more equipment than you need or want at this time....but, that doesn't mean that you must purchase exactly what it says. It (the prescription) can "order" a battleship....but you can purchase a PT boat if that's all you want right now. Since the prescription is good for life, you might want a battleship later......or you might not. Put yourself in a position so that you can go any way you want to go.

You're doing well.....we're all proud of you.

Gerald

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com, C-FLEX, Prescription

Guest · Post by **Guest** » Thu Mar 29, 2007 2:40 pm

If you have your original prescription, it should be sufficient to get a machine from cpap.com. I used my original prescription which simply had CPAP @ 13 on it. The prescription was 2 years old.

Slinky · Post by **Slinky** » Thu Mar 29, 2007 5:14 pm

tangents wrote: ... I made sure that my internist received copies of both of my sleep studies. I'm going to request that my internist:
1. Take over my treatment, or recommend a different doctor (one that monitors progress using data)
2. Write me a prescription for an APAP with data logging capability

I know he will not write this script without good rationale, so I will tell him the following reasons for getting a better machine:

I'm every bit as tired, if not more so, than I was before CPAP.
Neither the sleep doctor nor I have any way of knowing if my apnea and hypopnia events are still happening.
I know I have some mask leakage, and need to know if it is interferring with the therapy.
I need to know if I am mouth breathing - I wake up about every 3 nights with dry mouth.
I began a diet in January, and fully intend to lose weight this year (I should be down about 15 lbs from my last visit with him as proof of my intentions.) I have no intention of repeating a sleep study - EVER - so I need data to monitor changes to my pressure. (I wouldn't say this, or at the most would just say you HOPE to never had to do another sleep study)

As to why I don't want the sleep doctor to manage my condition, I will tell him:
He never discussed machine options with me - just ordered me one
He never discussed mask options with me - just asked what I used for titration study
My very first follow up appointment was scheduled for six weeks! later
His technician told me that that's the ONLY machine they STOCK
His technician (pretended not to) didn't know of the data logging machine choices
He obviously has no interest in even trying to monitor my results on xPAP or in finding my pressure needs
IMHO, there's a huge conflict of interest when the doctor is also the DME supplier
My insurance was billed $1750 for a $400 machine/humidifier

My suggestions are in bold. You've done an excellent job! You're a quick learner! You'll do well on xPAP!

tangents · Post by **tangents** » Fri Mar 30, 2007 6:47 am

Heartfelt thanks, for the GREAT advice. Slinky, I added your comments to my notes to take to Dr. GP this afternoon. Gerald, I sent CPAP.com an e-mail (I have meetings most of the morning) asking for the wording for both devices: Goodknight 420E Auto, and M Series Auto C-Flex. If I don't hear back by noon I will call them.

My sister also suggested that I have the doctor listen to my heart rhythm, just to be sure that I don't have any A-fib going on, so I'll do that too. Seems so weird that I'm so much more sleeeeeeeppppppyyyyyy now than I was before CPAP.

Again, thank you, Thank You, THANK YOU!! What a wonderful group of people this is.

Cathy

Slinky · Post by **Slinky** » Fri Mar 30, 2007 9:32 am

Good luck, Tangets. Just keep stressing NO doctor can effectively monitor your progress or lack of progress w/o a fully data capable machine. That is going to be the key issue. There's no way anyone can argue that.

mlim650 · Post by **mlim650** » Fri Mar 30, 2007 9:33 am

Cathy,

I was considering the Respironics M Series Auto with C-Flex and the PB GoodKnight 420E before my purchase.

From some of the posts I read the Silverlining software for the 420E easier to setup and use compared to Encore Pro for the M Series. At that time software is not my main concern but the comfort when I'm using the machine/mask. During my tiltration study I used the Optilife mask (I liked it) and a Respironics machine with C-Flex set at 2. The prescription is for 7cm of pressure - not high. So I decided to rent the 420E to try before deciding.

As for downloading the data into a card, I don't know if there's any gadget that will do that. I have a laptop that I bring it to the bedroom to download the data. Others have suggested using a longer cable but for your case it may not be practical since your PC is upstairs/downstairs.

Good luck!

Here's my plan to get a better machine - advice welcome!

Here's my plan to get a better machine - advice welcome!

Re: Here's my plan to get a better machine - advice welcome!

Re: Here's my plan to get a better machine - advice welcome!