Young newly diagnosed questions

[Mahon3y]

Hi everyone! Just wanted to introduce myself and ask a couple of questions. I'm 28 yrs. old and was recently diagnosed with OSA after feeling tired all the time for at least the past 2-3 years. I was told that I had 55 "episodes" per hour and that this was very high. Last night I had my second sleep study done where I wore the CPAP. I slept alright considering the circumstances (nervous and wires hooked all over). They told me I slept for a whole hour without having a single episode and they were pleased with this. They said I would be contacted by the company that would provide my CPAP. Basically my main question is will I have options of which machine/mask I am given? If so should I request a certain kind? I just want to make sure that I get the best products to help my condition. Any other helpful info or hints would be greatly appreciated. I look forward to getting to know some of you, and I must say I actually feel quite excited to be starting this whole process because I'm sick and tired of feeling sick and tired! Thanks in advance!

[silentsinger21]

Never get a "brick", a machine that only tells you hours (Basically, a Escape or a Plus), if possible ask for S9 Elite or S9 Autoset, it'll give you all information you need about your sleep once started.

[Pugsy]

You should have the choice of any mask you want.

You probably need to read this http://maskarrayed.wordpress.com/what-y ... me-part-i/

Find out from your insurance company who you can use for supplies and have them covered by your insurance.
Sometimes they have specific DMEs that they are contracted with.
DMEs often seem to stock one particular brand of machine. Mine used to stock ResMed machine and now they stock Respironics.
Read this about which machines offer full data or not so that you are familiar with which models are full data machines so you aren't stuck with one of those. Personally...I would limit machine brands to either ResMed or Respironics. The software available for those full data machines is easily available, free and easier to use than some of the other brands of software.
http://maskarrayed.wordpress.com/

Find out from your insurance company what the replacement schedule is for equipment that needs replacing....mask cushions, headgear, hoses, filters, etc.

Go directly to your insurance company to find out all this information. DMEs don't know what every insurance plan out there will allow or do. Often insurance companies will base their replacement schedule on what Medicare allows...but not always..so best to get the information directly from your insurance company.

Read this also..http://adventures-in-hosehead-land.blog ... -with.html Robysue has explained in greater detail what I have said.

You don't HAVE to use any one specific cpap supplier unless your insurance company limits you to one supplier.
Educate yourself on what machines are out there and you make the choice what you want to use...don't blindly accept what the DME wants to supply until you understand everything.

[Henry Jr]

from: "WHAT YOU NEED TO KNOW BEFORE YOU MEET YOUR DME Part I"
"... have your doctor specify this machine and write “dispense as written” on the prescription..."

Educate yourself first by reading the links above, then...
Have a LONG discussion with your doctor regarding the desired/neccessary equipment.
Then ask that the prescription be written with the specific machine and options named.

[Xney]

The best mask is the one that fits you well. Try as many on as you can while at the DME, and try them while lying down at your prescription pressure(s).

As the others have said, you want a data capable machine - don't get a "brick".

Have your doctor write a prescription for "mask of patient's choice" or something along those lines, so you can choose. Be prepared to go through a few to find the right one, even if you try them on.

[themonk]

Good advice on your specific questions about PAP machines already, so I will suggest a little extra advice - get copies of both of your full sleep studies and get educated on how to read them. There is some very useful info buried in them regarding what exactly is going on with your sleep and breathing. This is a pretty quirky disorder we all have and it has an interesting breadth and depth. Some people have really bad O2 drops, some have none. Some are worse on their backs, some not. Some have issues during REM, some don't. Lots of variations on a theme.

With your PAP study you can get a list of how different pressures impacted your events which can help if you ever need to do a range of pressures instead of constant.

Good luck to you!

[jweeks]

Hi,

Welcome to the forum. Going from 55 events per hour to an hour with no events is a pretty dramatic improvement. This sounds very encouraging...just think how much your body will welcome this when you get to sleep on CPAP for an entire night with little or no events.

-john-

[Chikorita]

Hello and welcome to the forum. A few weeks ago I was in your position waiting for my machine. It seems like ages and it's hard to take in all the info. Keep reading everything people on here suggest. It will all help and will slowly filter into your sleep deprived brain. And ask any questions you have. People are wise and patient here and will help you if they can. Hope you don't have to wait too long.

[Mahon3y]

Thanks everyone for the responses, they were very informative and helpful. I picked up my machine this afternoon and I have updated my equipment and I think I got the right products the only thing I'm a little unsure of is the software category. On the info sheet they gave me to take with me it says modem: PRI Wireless flow. Well I'm really looking forward to giving the machine a try tonight and will report back with results. Thanks again!

[Sloop]

Mahon

You've got the right attitude starting off, which is half the battle.

Hopefully, you are not a mouth breather and thereby can avoid having to choose a FF mask. Regular nasal masks or nasal pillows offer you an order of magnitude more choices. Visit a good DME** and spend some time (behind closed doors) with one of their OSA folks. Since you are a male -- I would seek a male agent. Try to get one that has been there for MANY years -- they usually feel more at ease in stretching the rules. (example: my guy will slip me a new mask every so often -- off the books).

**How do you find a good DME? I guess word of mouth is the best way. Talk to some friends of yours who are already on CPAP therapy. There must be some -- I know at least four of my friends.

[mzlaura1884]

Hey welcome! I am young too at 28 as well. I am on night 4 of my cpap machine and it's going a lot better than i thought it would. First advice i can give you is to DO YOUR RESEARCH. I contacted several DME's before choosing 1. Make sure you write notes to ask your doctor and to ask the DME's. Don't accept any bricks from the DME "cheap machines that are not fully data capable" There is a lot to know and it seems a lot of stress in beginning this journey but it is well worth it.

The S9 autoset is a amazing machine if i do say so myself. Have you tried different masks at your titration do you know if your doing a nasal or full face mask?

Any other questions feel free to post anything on this board everyone is very helpful. I know how you feel at 28 being diagnosed. I was officially DX July 24th.

[Sloop]

Thanks everyone for the responses, they were very informative and helpful. I picked up my machine this afternoon and I have updated my equipment and I think I got the right products the only thing I'm a little unsure of is the software category. On the info sheet they gave me to take with me it says modem: PRI Wireless flow. Well I'm really looking forward to giving the machine a try tonight and will report back with results. Thanks again!

Mahon

You've got an excellent machine and will love the C-FLEX (or A-FLEX). I suggest you start off with a setting of 2 and if you don't think you are getting enough exhale relief - then go to 3.

Regarding your mask -- I've never tried it, but I tried several nasal pillows over the years. I find they are really neat for about 2 nights and then my nostrils get irritated. So, I switch to a nasal mask until the nostrils heal. Again - I have no idea if what you chose will cause irritation -- but if it does, then you need to get a SECOND mask (nasal mask) to trade off with. Even if you have to purchase it out of pocket -- do it. Along this line, I would highly recommend the ResMed SoftGel mask. I would put it up against any other mask for comfort and control of leaks.

[2kittymom]

Welcome. I'm fairly new here too. It's a great place to be. Tons of good information, quick responses, etc. You have a great attitude, which helps a lot. Good luck on your journey.

[nate fry]

I would find a good ent and see if they can help you. I had several problems and had 77 events per hour. After surgery I now have around 7. Life is much better. If your in a situation where you don't have your machine it can be scary as well as dangerous. And if you get the right surgeon they can fix what ever imperfections you may have. You probably will still need a machine but it still helps and is a major improvement. Not to nention you will breath better threw out your day time activities.