So many questions, so little mind

[jsgoddess]

Hi, everyone.

My husband just got diagnosed with sleep apnea, and I'm an inquisitive sort, so I've been reading everything I can get my browser on.

He had the sleep study Tuesday night. This morning, he went to his sleep doctor who said that he didn't have all the test results back, but that it was a firm diagnosis of apnea. So on Sunday he's going back in to get the titration for the CPAP.

I hope this makes sense so far. This doctor is a terrible communicator and I never feel that I completely understand everything.

The doctor said he wanted the test to be done with a "c-flex" because it tends to be the most comfortable. I don't know that term and haven't seen it used yet.

When I got to work, a coworker said she had a CPAP machine that she wasn't using any longer. She used to be significantly overweight, but had gastric bypass and that has cleared up her apnea.

My health insurance is lousy about some things, so I don't know what they'll cover. Will it make sense to try to use this used CPAP? I understand that some of it depends on how the titration goes, right? She's going to bring the machine to work tomorrow, so I'll have more details about it then.

We live in the boonies. Will we want to buy things online instead of in person?

Is it okay that I'm completely anxious about this? My husband has a host of medical issues and I feel a little like the camel looking at the straw someone is trying to load on my back!

--Julie

[cpap teacher]

Dear Questions,
It will be alright, these are all very legitimate questions. First of all your husband sounds like he is on the right path. After his titration if you want to use a used machine that would be okay just make sure that you are still able to get filters and supplies for the machine. Also if you husband has a severe case of apnea your insurance would more than likely pay for a cpap and supplies the best way for you to find out is to call and talk directly to your insurance company.
Cflex is a feature on a cpap that allows for a slightly lower pressure during exhalation so it is easier to exhale. The online option is a popular one but usually you are on your own as far as learning how to use it and stuff. Your best bet is to find a local DME company and go through them most have service that is good and if you have questions you have somewhere to go. Make sure that your husband is set up with heated humidity for comfort and it helps with him being more likely to use it. Hopefully this helps and things all work out.

[mikemoran]

Questions,

All very good questions by the way. There are two types of sleep studies. A regular study like your husband had that dertimines if he has Apnea. The alternative is a split study that all takes place in one night. In a split study half the night is spent in the diagnosis phase, the second half titration study is done to see if CPAP is effective and what pressure is most benficial.

Your husband had the first type of study. So now he must go back in for another night to be hooked up to the same monitors but he will be using a CPAP during this study. That way the doctors can see how he reacts in changes in pressure and if CPAP will reduce disruptive events.

Depending on the causes of his Apnea, CPAP may or may not be effective. Your friends machine is set up for the pressure that worked for her and he will most likely have a different pressure prescription. So don't do anything with that machine until after he has his study.

C-FLex is found on Respironic Machines. EPR (Exhalation Pressure Relief) is similiar but it is found on Resmed machines. They both function differently, but are intended to lessen the pressure upon exhalation so it is easier to blow out agaisnt the air blowing in.

Your insurance will most likely provide the minimum configuration they can which usually is the following:

Straight CPAP without C-Flex
A passover (cold) humidfier
A standard mask

You will need to push for a heated humidifier which is critical for comfort. Yoru doctor is recommending c-flex for the study which should give you some support to push for this from the Insurance company. What would be optimum is if you could get yoru docotor to help push for an AutoPAP. This is a machine that starts on lower pressure and only increases as needed to combat events. A big advantage is the pressure is base upon actual need not a one time study in unfmailiar sleeping conditions. It will also adjust to your husband as his health improves, like with weight loss.

Most likely your insurance will connect you with a DME who will do initial set up. Many times they rent the equipment to you with re-imbursement from the insurance company. If you have a high deductable it may be more cost effective to get the equipment online than to be in this rent scenario.Some
like kaiser jsut provide you the equipment and how it is paid for is invisible to you. You will need to find all this out.

On this site they have billmyinsurance.com which will help you get your equipment at online prices and aid you in getting the insurance to pay for it. Check them out.

As far as instructions on how to use the equipment. Do a search on this board for DME. There are good ones but quite a few bad ones. Teh problem is they don't use the equipment and can actuall give you misinformation, like over tightening yoru mask straps. All of us here are users and can give you more guidance on what works. So unless there are insurance issues, don't shy away from buying online form a good supplier like CPAP.com (good service and lowest prices)

Good luck and this may not be the straw on the camel but a jack underneath him to keep him up. OSA is a contributor to many health problems. Fixing this can only help.

_________________

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

[jsgoddess]

Thank you both.

I'm overwhelmed, honestly.

I have great hopes, perhaps too great, that this is going to help my husband feel better. He doesn't sleep well, is always tired, and has so many health issues that it's hard to start listing them. The biggest is heart disease. He had a heart attack 11 years ago, and he's only 45.

I'm especially frustrated with myself for not following up on this a couple of years ago when I said, "Hey, do you think there's a chance you have sleep apnea?"

Okay, I checked with billmyinsurance.com and at least found that my insurance carrier does cover CPAPs at least to some degree. Tomorrow, if my coworker remembers to bring hers I can check to see what features it has. A heated humidifier is something that can be added to an existing CPAP, right? Or am I bonkers?

Thanks again.

--Julie

[rested gal]

"A heated humidifier is something that can be added to an existing CPAP, right?"

Yes, Julie. In fact, I prefer a separate heated humidifier rather than an integrated one. I have the F&P HC 150 heated humidifier -- I can use it with any machine.

Even more important than exactly what cpap machine your husband gets (unless the prescribed pressure is uncomfortable for him to exhale against; then type of machine can be very important) is the mask. The mask is going to be a big, big piece of the treatment puzzle to get right. It needs to be as comfortable as possible. Masks that a lot of people have success with are:

ResMed's Mirage Activa (nasal mask - covers the nose)

ResMed's Swift (nasal "pillows" mask)

Puritan Bennett's Breeze (nasal "pillows" mask)

ResMed's Ultra Mirage FF (full face mask - doesn't cover the entire face though - covers just nose and mouth) if he needs to breathe through his mouth.

CPAP treatment, whether it be straight cpap, or autopap, or bi-level (bipap or vpap are both bi-level machines) has been known to do wonders for people with certain kinds of heart disease. There is even a new cpap designed specifically for people with CHF (congestive heart failure) if they have Cheyne-Stokes breathing pattern.

As Mike Moran put it so aptly, "this may not be the straw on the camel but a jack underneath him to keep him up." LOL!!

When you get a look at your friend's cpap, write down the full name of the machine off the top of the machine (e.g. Respironics REMstar Plus or ResMed S7 Elite, or whatever.) If it's a Respironics machine, also look to see if it has a blue sticker on top that says "C-Flex." Inquiring minds here will want to know the whole name.

[johnnygoodman]

Howdy,

Reading this thread made my day. Its exactly why cpaptalk.com exists.

Allow me to echo previous posters in saying you are asking great questions. Nothing is off limits here, ask anything you need to and we'll answer as best we can.

If you finish wading through these good tidbits of advice, I suggest you check out the cpap.com "Answers" section. It gives a good overview of whats what in the CPAP world.

https://www.cpap.com/cpap-faq.php

Johnny

[jsgoddess]

I feel better able to cope with this diagnosis already. This forum is wonderful.

From reading all the FAQs, it's obvious that the heated humidifier is a must. I think the insulated or heated hose will be a must in our house. It's drafty here!

And since my husband has facial hair, the nasal pillows look interesting.

I see that the humidifier makes the hoses wet, do people ever buy more than one and alternate days?

Again, I want to express appreciation for your answers. I feel better informed. I even know now that: "There are special circumstances or needs for this mask, like patients who leak air out of the corner of their eyes."



When he has the titration done, they will tell him at that point if he needs a BiPAP, correct? Or is that a diagnosis only his doctor can do? I ask because the titration study is this Sunday, but the next doctor visit isn't for a month, and as you can see, I like answers.

[rested gal]

When he has the titration done, they will tell him at that point if he needs a BiPAP, correct? Or is that a diagnosis only his doctor can do? I ask because the titration study is this Sunday, but the next doctor visit isn't for a month, and as you can see, I like answers.

A really competent sleep tech will have a very good idea what pressure is going to be prescribed and what type of machine. Whether the tech will tell you what he/she thinks...depends on the tech, since all info is supposed to come from on high.

Julie, you have a fun personality and good way about you. With a little bit of luck of the draw (what tech you get) I'll bet you just might be able to charm some info out of him/her if you're there in the morning to pick your husband up.

P.S. The Aussie heated hose is the way to go. Just go on and order it now from sleepzone.com.au (the only place in the world to buy it) so it will be ready and waiting when you finally get the machine. It comes with its own cover. Get the one that works with Respironics and ResMed machines.

[Goofproof]

Another part of treatment that hasn't been mentioned is in the selection of equipment. Mose Dr.s and DME (Equipment providers) tend to make their money and leave you hanging in the wind. Most of us here want to take a proactive stance in our treatment. Depending on the equipment you get, software is available to allow you to see what the machines are doing as far as helping you. It allows you to make educated changes in how your treatment is or isn't working. By reading the different posts you can see the importance of this.

Also if congestion is a problem a full face mask, while is more uncomfortable is sometimes what is needed, If you can't breath all is lost.

[jsgoddess]

Okay, I've got my coworker's CPAP machine in my grubby paws.

It is a Respironics REMstar | Pro and there's a sticker on it that says "C-Flex feel the difference."

She says she never had a humidifier.

The hose is just a plastic ribbed hose. It looks like part of a vacuum cleaner.

The mask she used, and hated, is still attached to the hose. It just says "Comfort Classic" on it. That mask should just be discarded, right?

[Goofproof]

That should be a fair machine. The Pro will only keep track of hours worn.

For a proactive treatment you need, the Pro 2 with C-Flex and Smartcard or even better the APAP model. Them you can download the Encore Pro software and order the Smartcard reader. Without the Smartcard and the reader you can't tell where your treatment is at, and have to rely on the Dr and DME.

Your used machine will have to be set to your prescription before you use it, and the filters may need replaced.

You can order a new mask from this site, You might save and clean the old mask, maybe steam it carefully if the instructions allow. Wash the hose in bleach and or vinegar diluted and air dried.

You will also need a Heated Humidifier, that's almost a must. If you can get the ins to spring for APAP and HH, thats the best but what you have will get you by, and at worst will be a great backup.

[jsgoddess]

That should be a fair machine. The Pro will only keep track of hours worn.

For a proactive treatment you need, the Pro 2 with C-Flex and Smartcard or even better the APAP model. Them you can download the Encore Pro software and order the Smartcard reader.

This one has a Smartcard in it. It says "Encore Pro" on one end and "Smartcard" on the other. Carol the Coworker says she didn't have any software with it, though.

[rested gal]

Julie, if it's ok with your friend and you're curious about what the settings are on that Respironics REMstar Pro with C-Flex, you can do this:

1. Hold down the two "user buttons". Those are the gray buttons side-by-side on center top. They look like right/left arrow buttons.

2. While holding down those two buttons, plug in the machine's power cord. Keep holding down the buttons for about 8 seconds. You'll hear the machine beep, perhaps more than once. Release the two buttons.

3. You're now looking at the therapy setup menu.

Use those same two buttons to go forward (right button) and backward (left button) through the menu. I'd suggest you write down every number and every symbol you see. It's always nice to have notes of how something is set up.

These are things you'll see on the "setup" screen:

a. the number of days the machine was used for more than 4 consecutive hours.

b. the therapy mode (CPAP or CFLE). CPAP is without C-Flex. CFLE means C-Flex is turned on (more about that in "d".)

c. the pressure.

d. if the machine was set for CFLE mode, the C-Flex setting will appear. It will be a number (1, 2, or 3.) "1" gives only a slight reduction of pressure when breathing out. "3" gives the most reduction -- the most relief for exhaling.

e. the ramp time. 0 - 45 minutes. If a person doesn't want to use "ramp", it should be set for 0.

f. the ramp starting pressure. Most DME's set that starting pressure for "4 cm H2O". However, many people find that to be too low, making them feel they have to work too hard to breathe in through a mask. In fact, a lot of people don't use ramp at all, preferring to start right out at their prescribed pressure. If a person does want to use ramp but finds that "4" feels like "not enough air", changing the ramp starting pressure to 5 or 6 (or more) can feel better.

g. patient disconnect setting. If this is "On", it will sound an alarm if there is a large steady leak or if the mask is removed. If a person doesn't want to hear that, this setting can be "Off".

h. button lights setting. This lets you set it so the lights behind the buttons be on or off when the machine is blowing air. The lights always stay on when the machine is plugged in but not blowing.

To exit from the menu, just press the on/off button briefly as if you were going to turn the machine on. You're out of the setup menu.

If all you used were the two center user buttons to go through the menu, no changes were made.

The only way to change any setting is with the ramp and humidifier buttons, which act as up/down buttons whenever you're in the setup menu. Changes, if any are made, are automatically saved when you exit from the menu.

I'm not surprised that your friend hated the "Comfort Classic". Typical cheapo "first mask" given out by way too many DME's. Sheesh.

It's like the DME expects people to drop out, sets them up with a poor excuse for a mask that's just about guaranteed to make the person quit, and then..."See, that's why we don't give them a better mask to start with! Most of 'em are going to drop out anyway!"

Have fun exploring, Julie.

[jsgoddess]

Steve had his second sleep study last night, and I talked with the technician extensively.

First, the results of the titration. They got the best results with him at 10. She said that at 10 he was hugely improved with his apnea.

He couldn't use a nasal only mask. Anything that didn't cover his mouth as well he said he felt an overwhelming impulse to open his mouth. When he tried a mask that covered his mouth, too, he didn't need to open his mouth. This sounds a little strange, but I knew he was strange already!

The technician suggested that if he starts with a mask that covers his mouth, in six months he may find that he can switch to a different style because he's retrained to keep his mouth closed when he sleeps. Does this agree with people's experiences?

The good news is that he didn't mind the mask and felt okay wearing it.

The bad news is that the technician also noted that he makes involuntary leg movements every 10-15 seconds. When I dragged him to the sleep doctor, it was for these movements, which I suspected were PLMS (after talking with a friend who has it). The apnea diagnosis pushed that out of the forecourt, but it looks like I'm right about his nighttime flailing. I don't know how much of his sleep problem is apnea and how much is PLMS.

And the tech said that she's had two couples already ditch the sleep doctor we have for his lack of communication style. It's a small town, so there aren't many choices. Bah!

[Wulfman]

And the tech said that she's had two couples already ditch the sleep doctor we have for his lack of communication style. It's a small town, so there aren't many choices. Bah!

I wonder if we had the same sleep doctor or if there are just so many like that?
In the case of mine, from what I've heard, there are a LOT more than a couple of people who ditch this one. Most usually go a couple of times to get the prescription and THEN ditch him.

The technician suggested that if he starts with a mask that covers his mouth, in six months he may find that he can switch to a different style because he's retrained to keep his mouth closed when he sleeps. Does this agree with people's experiences?

You bet! I started off with this one and saw no need to switch.

I'm not knowledgeable about PLMS, but maybe there are others here who would know if CPAP therapy also helps in that regard.

Best wishes,

Den