Newbie Saying Hi and asking for a little help

[spitracer]

Hi Everyone!

Little info. on me. I'm 47 (male) with 2 daughters 10 and 13, married nearly 23 years and have just completed my CPAP study. To be honest I'm a little freaked out, not so much as I need help to sleep but with all the different equipment, options, etc. The other thing that really bothered me was during the CPAP night was waking up and feeling like I was drowning in air....like I stuck my head out the car window at 70mph! Will this feeling go away?

As I understand from the process I will now be set up with my equipment, but this is before I see my doctor again? That appointment is scheduled for a month later. I didn't like this so I asked for a consultation before I get my equipment so I can understand what kind of pressure I will be at and anything else I should be aware of.

So here are a few questions that I could use some help with:

1) At my appointment what should I ask? Should I ask for a copy of the study? pressure I will be needing, etc.

2) Are there things I should ask for in terms of my care. Example: I have always fought with my weight, should I ask for some assistance to help reduce my weight like working with a dietician, or other specialist?

3) I tend to be both a mouth and nose breather, can you train yourself to be just a nose breather and is this worth the effort?

4) I see all kinds of equipment listed, because of my anxiety should I be looking at a BiPAP (VPAP- same?) so the exhale is less pressure? Will insurance only cover a standard CPAP

5) What kind of equipment should I be asking for. Any recommendations would be appreciated.

I have been reading the forum and will continue to do so in search of knowledge...but it is a steep learning curve!

Thanks in advance.

Chris

[chunkyfrog]

Get as much information as you can BEFORE you see anyone. Here is the place.
Many DME's will try to take advantage of you, but our health is more important than their bottom line.

[spitracer]

I suspected that is the case Mr. Frog!

I just feel like I'm climbing a mountain trying to get a better grasp on all of this.

Chris

[Al Peena]

Chris,

I just started and others will have more info, but this is what I found as a noob:

- i didnt have my followup appt yet so it will be interesting to see what others say- my CPAP info is being sent daily to the dr via modem
- asking about other things to do is always good.
- i am a mouth breather and I am finding easier than I thought.
- they gave me my equip, had no choice (yet, as I am learning) so far its been good. The dr. tells the tech what pressure to set (at least they did with me)
- i just let them give me what they gave me as I have no info to at this point to ask otherwise... maybe later i will
- keep reading the forum, its has been vry helpful for me and filled in alot of holes!

[jen4700]

Welcome to the forum!! I'm sure you'll be feeling better in no time! My advice? Read, read, read, read. There are a ton of resources on this site alone. Plus many of the frequent posters have their own blogs. This is a good place to start:

What you need to know before you meet with your DME
http://maskarrayed.wordpress.com/what-y ... me-part-i/

[mayondair]

Hello and welcome to Hosehead land! Time to do some homework, read and research before you meet with a DME and accept a machine. Unfortunately some DMEs have the reputation of a used car salesman . Janknitz. ' s blog http://maskarrayed.wordpress.com/. has excellent information. You are the customer,you are paying for this one way or another, you have choices. It's easier to get the right machine at first than it is to try and switch later. No one care about your health as much as you do , don't trust anyone else to take care of it. kathy

[Janknitz]

1) At my appointment what should I ask? Should I ask for a copy of the study? pressure I will be needing, etc.

Yes, ask for a copy of your study AND a copy of the prescription. If your doctor is willing, ask him to specify a machine with “patient access to AHI and leak data” and a “mask of patient’s choice” on the prescription—that will save you a lot of grief with the DME.

2) Are there things I should ask for in terms of my care. Example: I have always fought with my weight, should I ask for some assistance to help reduce my weight like working with a dietician, or other specialist?

Weight loss MAY help, so it wouldn’t hurt to ask. A medical dietician is going to give you the standard advice (eat low calorie, low fat) you already know. Has that ever worked for you?

3) I tend to be both a mouth and nose breather, can you train yourself to be just a nose breather and is this worth the effort?

Yes, you can train yourself to be a nose breather. It’s pretty simple. Put your tongue on the roof of your mouth and close your lips. Practice all day when you are not eating or talking. In a day or two, it will be a normal habit, and for many people (not all) it carries over into the night.

4) I see all kinds of equipment listed, because of my anxiety should I be looking at a BiPAP (VPAP- same?) so the exhale is less pressure? Will insurance only cover a standard CPAP

Your insurance will only cover a CPAP/APAP UNLESS you meet certain diagnostic criteria—you can discuss that with your doctor. Either should work because you can set some exhalation pressure relief (EPR on ResMed, “Flex” on Philips Respironics machines). There are techniques to get used to the pressure as well. One is ramp, where the pressure starts out very low and gradually increases (supposedly once you are asleep). Most people find that they get used to the pressure quickly, and then the ramp feature can be a nuisance because it makes you feel like you’re not getting enough air. We can tell you how to turn it off when you get to that point.

5) What kind of equipment should I be asking for. Any recommendations would be appreciated.

The major players are ResMeds and Philips Respironics. The up to date models are S9’s for ResMed and System One’s for Philips Respironics. Don’t accept an older, outdated machine.

Don’t accept a machine without EFFICACY data which tells you more than just the number of hours of use. In the ResMed line, do NOT accept anything with Escape in the name (Escape or Escape auto). In the Philips respironics line, do not accept the System One Plus with Cflex Plus (but, just to confuse you, the System One Pro with Cflex plus is OK). And you should probably avoid the System One Auto IQ as well, because it’s only auto for 30 days. If you want an auto, get an auto, but not one of the ones with limited or no EFFICACY data.

If your DME provides or if you are interested in a Fisher and Paykel Icon or DeVlibiss, ask about it here first.

[spitracer]

Wow! I really appreciate this info.

The insurance write up was gold!
I'm checking my wifes insurance right now.

So as I understand the Resmed S9 will not be at gale force when I exhale? That would make a world of difference!

[BostonGal]

i just got a Resmed S9 auto and it's good. It takes getting used to but the exhaling is not so bad. Guess it will mostly depend on the level of pressure you need.

good luck

[Pugsy]

So as I understand the Resmed S9 will not be at gale force when I exhale?

ResMed machines EPR allows up to a 3 cm reduction in pressure during exhale. If you happen to need really high pressures there are other types of machines called bilevel machines that offer exhale relief greater than 3...so until you know what your actual pressure needs are we can only speculate as to how you will respond to EPR.

I know you won't believe me now but those gale forces winds feel like a gentle breeze in the morning once you have adjusted to the pressures. Also..these machines have something called "ramp" which lets you use a lower pressure for a predetermined amount of time to hopefully have you asleep before the full pressure kicks in. Once asleep we don't notice the pressure all that much. It is part of the "getting adjusted to" process.

[zoocrewphoto]

Wow! I really appreciate this info.

The insurance write up was gold!
I'm checking my wifes insurance right now.

So as I understand the Resmed S9 will not be at gale force when I exhale? That would make a world of difference!

I just got the Resmed S9 auto 9 days ago, and I love it. I actually turned the ramp feature off after 2 days as the starting setting of 5 felt like not enough air. My machine is set for 11-17, which means it stays at 11, unless I need help, and then it goes up. I have checked the data, and it has been up to 17 once, and in the 16s many times. I have never felt like it was too strong. In the morning, I will wake up and wonder if it is even on. I've learned that this is normal, as we get so used to it that it doesn't feel like much after awhile. I will bump my mask to hear the leak to be sure it is on. It actually was off once due to a humidifier error. My machine is also set with an EPR of 2, which means it goes down a little when I exhale. It has 3 settings. My doctor prescribed #2.

The only thing I have had trouble getting used to is the mask leaking when I roll over and bump it. So, I am working on that. But even in 9 days with multiple wake ups and a couple rough nights, I am noticeably feeling better, and my blood pressure is going down to normal levels. I can definitely feel the difference.

[Maxie]

When you say you have completed your CPAP study what do you mean? Did you have a sleep study and a triation study? After my sleep study I saw my doctor who told me the results of my sleep study and said I need to go back for a triation study (I was actually so upset I nearly burst into tears.) The second study was when I started to learn about CPAP so I'm curious about whether you had one or not. My pressure was set at the second study and I've never felt the need to change it but I've only been doing this since the end of Dec.

[locust78]

I can sympathize with your anxiety. The CPAP experience can indeed seem like a lot at first, but it does get better.

When a person takes their first driving lessons, stress and uncertainty can overwhelm them, but in time, getting behind the wheel becomes second nature. It's the same with CPAP. It goes against our nature to receive assistance with our breathing, and working our way through the ins and outs of masks, and other equipment can make it seem overwhelming. It took me a full six months before everything settled down and I was able to go the entire night on CPAP, but it was worth it. Everyone's experience is different. It might all be a breeze for you, but if you do hit some bumps, remember that Patience is your best friend.