New - just dx'd

Rita · Post by **Rita** » Mon Jul 14, 2008 2:47 pm

Hello my name is Rita. today I went to my doctor (neurologist) for the results of my sleep study. Yes he does do complete sleep studies as well.
He is very thourough. Anyways he said I had severe sleep apnea. I go to sleep but accordng to the results I'm not actually sleeping because I am constantly waking myself up from not breathing...snoring and moving, jerking etc my legs and hands.

The next step is to get a cpap machine. I am so nervous about all of this and not sure what to expect.

Can someone please give some suggestions as to what types of masks or machines are best?

My hubby has a cpap machine as well and has had it for a little over a year now. He is laughing at me because I'm asking all these questions etc. He is the type of person who will take things as they come....me on the other hand want to know more about this and what sort of things I should look at for cpap machines, humififier etc.

Anyway thanks for eyeballing my post.

Hugs to all
Rita

WindFlyer · Post by **WindFlyer** » Mon Jul 14, 2008 3:01 pm

Hi Rita:

Welcome to the forum. You will find much helpful advice from all. The best place to start would be with a straight CPAP machine. Later on you can get into more details about adjustments to your therapy. The best place to start is with something simple.

I cannot stress this enough, though: when you bring your mask and machine home, before you go to bed the first night put on the mask and start the machine while you're sitting and watching TV or something like that. Give yourself some time to "play" with the mask and tug and snug on the straps and just in general get used to the way it feels to breathe with it on. This will eliminate a lot of stress during the first night.

Good luck and keep us posted and ask lots of questions- we're all here to help!

ritakj · Post by **ritakj** » Mon Jul 14, 2008 3:06 pm

Thanks for your reply. I would have never thought to wear it before bed to get use to it....seems simple enough. I guess there are bound to be things that crop up at least for the first few days using it...LOL

P.S by the way I sent the above message before I registered....so hopefully I will still get the replies...lol

sleepydoll · Post by **sleepydoll** » Mon Jul 14, 2008 4:59 pm

Welcome to this great forum!

I'm sure that you know about the "Our Collective Wisdom " lightbulb and the " CPAP FAQ " red dot for a multitude of answers fight at the top of this forum.

if you buy a CPAP machine, just make sure it comes with:

1. a humudifier ; having an inverted vacuum blowing air up your face without humidity can be a case of nose irritation, redness, sores ect.

2. software to read the data. This way you ( or your doctor) can see the progress and or problems that can occur on a daily basis ( your AHI, mask leaks, etc...)will be recorded.

The type of mask is another story...basically the story for most of us!!!
You'll have to try them and see what fits you best, depending if you need a full-face mask, a nasal one...
so many choices...sooo little time!

If you have the opportunity to try your xpap with different masks before buying them...go for it!

Good luck !
D.

Julie · Post by **Julie** » Mon Jul 14, 2008 5:04 pm

I completely disagree! The best place to start is not with a straight CPAP because you can only (insurance-wise for most) replace it every five years, and there's no need to do it in any case. An Apap can be run as a straight Cpap if that's your choice, but DO get the Apap to start with as it gives you better treatment options - more flexibility (and we all learn to raise and lower our pressures ourselves pretty quickly with help from people here) and not have to depend on DME's or even MD's deciding every six months (with or without needlessly expensive follow-up sleep studies) just which (one) number is best for us. With the Apap, you have leeway to overcome events in a way that Cpap's just aren't set up for, so for heaven's sake at least ask for that (and preferably one that also has a smart card that, if you choose to (as most of us seem to) can read software and track our own progress, never mind tweak it occasionally depending on how we feel and what our (own) reports say.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, DME, APAP, Smart Card

Slinky · Post by **Slinky** » Mon Jul 14, 2008 5:18 pm

Hi, Rita. Welcome to the forum. I'm going to disagree w/WindFlyer regarding the choice of CPAP.

But first, take a look at your husband's CPAP machine, it should say right on the top the brand and model. Tell us what brand and model it is.

I would STRONGLY suggest that you ensure that ANY CPAP machine you get be a FULLY DATA CAPABLE CPAP. I ask about your husband's CPAP simply to know whether his is fully data capable or not. Whilst he is satisfied w/his CPAP your being here tells me YOU are NOT going to be satisfied w/anything LESS than a fully data capable CPAP.

Have you and your husband been satisfied w/the support, service and assistance he's received from his local DME supplier? Did he have to try more than one mask to find one that fit comfortably w/only minor leaks? Was his local DME supplier helpful in that regard and lenient w/their mask exchange policy?

I ask only because if he's not been particularly impressed or satisfied w/his local DME supplier and your insurance in contracted w/any others in the area you might want to explore the other suppliers to find one you would be more comfortable with.

This might be a very good time to visit his DME supplier, meet w/their RT and see how well the two of you get along, how willing and able to answer your questions and relieve some of your curiosity and nervousness about this whole CPAP situation he/she is; how comfortabe you are w/him/her.

It is good you have a good sleep neuro as that should be a great help to you. Be sure to let him know, if your husband was also his patient, that you are more inquisitive, more "involved" w/your health care than he is and that you'd like to take a more active part in your therapy and will want more access to your data and knowing what is going on w/your therapy than your husband; that you'd like to have a fully data capable CPAP so that you can monitor your therapy and have a better idea of when you might need help.

ritakj · Post by **ritakj** » Mon Jul 14, 2008 6:46 pm

Hello everyone and thank you for the welcome! I do so appreciate the input you have given me. Some of the questions that were asked I will address here.

My husbands cpap is Fisher & Paykel SleepStyle 600 series. Does not have the data stuff on it. He has a builtin humidifier in it. He seems to like it.
I was none to impressed at all with the dealer that he went through. We did have to go back and exchange once but he has had the same one for almost 2 years now. He should have his nasal pillows and tanks replaced..but looking at the price of both I think he just needs to get a new one...lol...it is sooooo noisy...he literally sounds like darth vader...lol

Anyways yes I would like to get one that is data compatible so I can see what is going on etc. I'm a do it yourselfer in that sense I want to know if things need changing I can do it or at least have the ability to have the print out etc. However it will depend on my insurance and what they will pay for at this time. I know going really cheap isn't always a good thing that is for sure but when one is strapped etc and not knowing what insurance etc will pay (United Health Care) I'll have to talk to the dealer. I'm told that the dealer I have will actually deliver it here to my house after the fitting etc is done. I will be able to pick which one I like best. My hubby has the swift mask (nose pillows) with the headgear.

WE have not had any contact with his dealer since we got his cpap machine. He has the mentality that if it ain't broke don't fix it...lol he is happy with it so I guess that is all that matters.

Thanks again for all the replies....I don't want just a basic plain old cpap that won't do me a whole lot of good if I need to do things...such as stuff I have seen here in the forums.

Ok this is long enough...hope you all have a great night/day where ever you are

yorkiemum01 · Post by **yorkiemum01** » Mon Jul 14, 2008 7:09 pm

Hi Rita,
I'm also a 'Rita' and have severe OSA. Cannot begin to tell
you how HELPFUL and INFORMATIVE this website has been for
me in this journey, but I'm happy to report with all the support here,
I'm fairing well. Cannot compliment those here enough for sharing
their experience and expertise, and the moral support they offer.
Don't feel ready to offer direct advise yet, as I've discovered that
its a very personal journey, what may work for one, may not for another, but persistance and patience I would recommend highly, as well as this site for feedback. Welcome to the Forum! RitaJ (Yorkiemum)

DreamDiver · Post by **DreamDiver** » Mon Jul 14, 2008 7:10 pm

ritakj,

Welcome!

If you haven't already, read 'Our Collective Wisdom' (the yellow lightbulb at the top of the forum). It's chock full of answers. When you get your equipment, remember to fill out those particulars in your profile.

Good luck on your DME visit.

Slinky · Post by **Slinky** » Mon Jul 14, 2008 8:40 pm

Rita, I would suggest that you call your insurance company and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than one, just in case you aren't comfortable or happy w/the one who you say is scheduled to bring some CPAPs out for your selection.

The ONLY straight CPAPs that are fully data capable to my knowledge are
1] Resmed S8 Elite w/EPR
2] Resmed S8 II Elite w/EPR
3] Respironics M Series Pro w/C-Flex

IF you feel up to and want to try for an autoPAP, the ONLY fully data capable autoPAPs I am aware of are:
1] Resmed S8 AutoSet Vantage
2] Resmed S8 II AutoSet
3] Respironics M Series Auto w/C-Flex
4] Respironics M Series Auto w/A-Flex
5] Puritan Bennett Goodnight 420E (data only via software)

Be careful! Just 'cause the CPAP has a smart card does NOT mean it is fully data capable.

For example: neither the Resmed S8 Compact nor the Resmed S8 Escape nor the Respironics M Series Plus w/C-Flex are fully data capable.

The easiest way to know is to ask the local DME supplier to show you ON THE LCD screen the data it is capable of reporting to see for yourself.
For instance the Resmed Elite data via LCD screen is
Efficacy Data:
1] Pressure at or below which you spent 95% of the night
2] Leak rate at or below which you experience 95% of the night
3] AHI (apnea/hypopnea index = number of apneas & hypopneas you experienced per hour)
4] AI = number of apneas you experienced per hour
Usage Data:
5] Number of hours you've used the device
6] Number of nights you've used the device
7] Number of nights since your device was first used
8] Number of hours you used your device that night

They will also report the averages for one week, one month, 6 months and one year of data when you've used it long enough. I cite the Resmed LCD data because the Resmeds are what I've had experience with.

Another IMPORTANT item for you to know is that MOST insurance companies reimburse DME suppliers for CPAPs by HCPCS code, NOT by brand and model. That HCPCS code for CPAPs is E0601. That code applies to bare bone straight CPAPs, compliance data only straight CPAPS, CPAPs w/some form of expiration pressure relief such as EPR or C-Flex, fully data capable CPAPs thru fully data capable autoPAPs. While the DME costs vary w/which brand and model CPAP they provide, they are reimbursed only one set, agreed upon, contracted price for HCPCS code E0601. So it benefits their profit margin to provide you w/a bare bone, compliance data capable straight CPAP. Don't let them try to con you into paying extra for full data capability.

And SOME local DME suppliers are "less than truthful" or guilty of "sins of omission". Not all. There are good local DME suppliers out there. You just don't know which kind you are gonna get so if you have the option shop carefully.

Keep in mind, this is YOUR health, YOUR therapy, YOU are paying for the equipment whether thru insurance or out of pocket, YOU do NOT have to accept bottom of the line equipment. Be FIRM, be DIPLOMATIC, be TACTFUL - but bottom line: its YOUR therapy. Get the best you can. IF you can get a fully data capable autoPAP, fine. An auto might not be worth the stress if you have to fight for one. BUT if they start out offering you a bare bones straight CPAP asking for a fully data capable autoPAP can start the negotiations, this "allows" the local DME some negotiating room to offer you a fully data capable CPAP instead w/less aggravation for you.

Good luck.

danw61 · Post by **danw61** » Mon Jul 14, 2008 9:52 pm

Very well said Slinky!

You would do well to listen to him Rita.

ritakj · Post by **ritakj** » Tue Jul 15, 2008 12:31 pm

thank you so much for your input. I only know that my doctor asked me about the machine my hubby has (straight cpap) etc and he told me that his wife has an Elite so he asked me if I would want to try that one as it is fully encapulated and quiet. The one he was talking about I do think it is data capable Resmed S8 II Elite w/EPR. Not sure when I will get it as they still have not called for apt. He did not go into great detail about the machine but he said that this machine doesn't have any leakage problems. His wife has been using it for about 4 months now with no problems and it is more quiet than a whisper according to him.

I did get my report from my doctor for the sleep study.was totally shocked at the numbers...sheesh.

My rem sleep is at 15% and 18%. Taking 325 minutes to get to the first REM sleep.

634 arousals were recorded with an index of 64 per hour. The majority of the arousals were respiratory-related, however, frequent periodic limb movement were also recorded.

He said that basically to sum it up that I'm waking myself up more than once a minute....didn't know that was possible...lol. He said I may not realize that I'm waking up, but the obvious symptoms tells me everything.

His main diagnoses is

1. Obstructive sllep apnea-hypopnea syndrome...severe
2. Severe snoring resulting in frequent arousals.
3. Extremely fragmented sleep secondary to frequent respiratory and snore arousals. There was essentially no continutiy of sleep during the night.
4. Early sleep onset latency of 4.9 minutes reflective of signifcant daytime hypersomnolence.

Plus it doesn't help that I have Peripheral Neuropathy and of course I have insomnia, carpal tunnel syndrome as well as a recent hysterectomy. So my body is basically all messed up with all that is going on.

The doctor says he is pretty sure that once we get the sleep problems leveled out with cpap stuff and after surgery for the neuropathy I should be back to feeling human again.

I will just be glad to get this over with.

Thank you to everyone for all your replies. I have lots of questions for the DME that is for sure.

DreamStalker · Post by **DreamStalker** » Tue Jul 15, 2008 1:02 pm

ritakj wrote:.... snip ....

Thank you to everyone for all your replies. I have lots of questions for the DME that is for sure.

Uh uh, ask your questions here ... make your demands to the DME. Rmember the DME works for you and you need to make that clear to them, otherwise they will walk all over you getting to your wallet.

Slinky · Post by **Slinky** » Tue Jul 15, 2008 1:12 pm

The Resmed S8 II Elite w/EPR is a great device. I had the Resmed S8 Elitle w/EPR prior to being switched to a bi-level due to my COPD. The S8 IIs have the wonderful new EasyBreathe techonology. You should be very happy w/it and it will provide the data to answer many questions should you run into any necessary therapy changes.

However, your doctor isn't quite right, or you didn't hear him quite right. The xPAP has little to nothing to do w/leaks except if the pressure were set too high. It is the MASK that is key to leaks and leak prevention. In fact, the MASK is THE KEY to successful xPAP therapy once your needed pressures has been accurately established.

ritakj · Post by **ritakj** » Wed Jul 16, 2008 4:57 pm

I have another question...if someone has a deviation in the nose is it gonna cause any problems using a cpap?

guess I will have to read up on this some.

Thanks again for all your replies you have all been a great help.

Mask