Options with the VA??

[shinyhappy]

I’m so confused! I did a sleep study at the end of 2010 and it took the VA doctor 4 months to send me a letter that just said “you have sleep apnea” call to get fitted for a CPAP machine. I went for that appt last week and I was expecting some sort of fitting session but all she did was hand me a full face mask and machine tell me how to turn it on and sent me on my way. I was given no options. When I asked whether I needed to have the pressure adjusted she just said the machine would automatically do all of that. It appears to be a fairly nice machine, it’s a Resmed S9. But its seems like a very expensive paper weight to me right now. It’s been 4 nights and it’s been so horrible. I wake up in the middle of the night with a gush of air in my face and I just give up and take the stupid mask off. I found me self getting anxious at the thought of going to sleep last night which is funny since I ‘m normally so tired. This morning I had a huge red mark on my nose from the mask that looks like a bruise. I don’t even know if they will let me switch to a different type of mask. Its like they just gave me something and expect me to make it work. I feel so much worse I would rather deal with the apnea at this point. From what I’ve read so far on this forum it seems that there is quite a bit of frustration with the quality of care received from the VA. I just felt the need to vent so thank you for reading this.

[Pugsy]

http://www.sleepnation.tv/post/2337667545/resmeds9

Above video will help with explaining your machine. Sounds like Autoset if the machine pressure "adjusts" to what you need.
Please make sure exactly which model you have and lets hope not something with "Escape" in it.

Software is available. Check out forum member Uncle_Bob signature for software and clinician manual links.

This tutorial explains how to use the software.
http://montfordhouse.com/cpap/resscan_tutorial/

Add your equipment to your Profile (User Control Panel/Profile/Equipment tab) in TEXT please and someone can perhaps give you more specific ideas about your mask problems once we know what mask you use.

Welcome to the forum. What you have experienced is unfortunately quite common. You can learn to take care of things yourself though. Just takes some time and lots of reading and patience.

Lots of masks to choose from. Full face mask (cover mouth and nose), nasal mask (cover nose only) and nasal pillow masks (little pillows fit in nostril, check my profile to see the one I use). No mask should cause bruising or pain. That means it is too tight.

[msradar65]

Welcome to the group. sorry you have getting no service from the VA. The long time members of this group are wonderful. They will give you lots of guidance to help you help yourself and to make therapy work for you.

The s9 Auto is a nice machine. I have one and I love it. The key is finding the pressures that work for you and the perfect mask that works. It can take many mask changes to find the right one...or at least the one you can most tolerate.

[archangle]

Sorry you had to join us, but welcome to our little group. Let me suggest you read the announcements at the top of the main page. There's also information on the "wiki" link at the top of each page with the yellow lightbulb.

If the machine is gushing at you, turn it off and back on and the pressure should drop, temporarily at least.

Relax and take the whole experience and learning curve a little bit at a time. It will help if you go into your profile on this board and "edit equipment" to list your CPAP machine, mask, etc.

The VA should be willing to switch masks with you if need help. Several times if necessary. Or to work with you if you need help. I suspect that they will want a followup visit at some time to check "compliance," which usually means you had the machine on for 4 hours or more each night for a certain number of nights.

My dad got CPAP service from the VA. We had a few glitches, but they were very good in the end. One trick is to stay positive, but persistent. Act as if you think they're on your side, even if you don't think they are. Don't act panicky or disturbed. Don't act as if their attitude is getting to you. After a while, they may decide that it's easier to give in than to have to see you again and again. Keep coming back if you need something and don't get the results you want.

If possible, try putting the machine on when you're not sleeping and read, watch TV, etc. just to get used to the mask. It may help you get adjusted and figure out how to work with the machine. It counts towards your "compliance" hours, too.

Look on the display when you turn it on and read the pressure. Then when it's "gushing", read the pressure before you turn it off or remove the mask.

I believe the S9 has a "mask adjust" function that will allow you to get "full force" from the machine to adjust your mask, but one of the S9 users should speak up to confirm. One hint, "tighter" is not necessarily "better." Sometimes too tight will make it leak.

If the therapist and doctor are any good at all, they will ask you to bring in the data card from the machine. They'll read the data, and figure out a better pressure setting for your machine and put it on the card. When you plug the card in, it will reset the pressure on your machine. Did they tell you to come back or send them the card after a certain amount of time?

You can find info here on how to adjust the machine on your own, but give them a chance to read your card and adjust your pressure at your next meeting. Read up on what you should do before you go tinkering. The VA people may get ticked off at you for adjusting the machine, but don't let that bother you emotionally. They are just something you have to put up with. Pretend to go along with them until the machine becomes "yours."

Does the machine say "autoset" above the on/off button? And look like this: https://www.cpap.com/productpage/3151 ? If so, that's a resmed S9 Autoset. Put it in your profile. Did you get a humidifier?

Good luck.

WOW! Two other people responded while I was typing this.

[shinyhappy]

Thank you for the replies... I'll update my info once I get home tonight and I can double check the mask. I clicked the video link and yes that is the machine I have with the same humidifier...

I called and spoke to the tech that I got everything from last week. It was hard not to take it personal and get upset because she was such a witch about me asking if I had a different option for the mask. She insisted that I told her that I slept with my mouth open and that's why she gave me the full face mask. I just told her that I had a deviated septum. She said I could have the nasal pillow or nasal mask and asked which one I wanted... I didn't feel educated enough to answer that question with all of my 3 days of researching the topic just then. I will read more on here and hopefully will be able to find a better solution.

I never once saw a doctor about my apnea. I have private insurance so I'm sure the VA will bill my company for the machine just like they did for the sleep study. They didn't say anything about having to come back and check usage or compliance. I wish I could read a book or watch tv for 1 hr let alone 4, lol If I’m home and awake then I’m on my feet caring for and chasing around a four year old.

I feel better from reading this forum today so thanks for all the great info:-)

[GumbyCT]

Your options are pretty much - "eat or go hungry".

You didn't say which VA you are using? They are not all working from the same script and then some are just worse than others.

While the VA has come a long way, they are still new to the sleep medicine and in the learning curve. They do provide some very good equipment, however, you will do much better if you expect nothing but equipment from them and learn the rest on your own.

Remember this rule, "IF it means someone has to do something, it won't be happening". The VA is much like AD (Active Duty) in that they both have a captive audience and don't know how to say Customer Service much less spell it. You eat what they are serving or you will go hungry. Learn how to use your machine right here, I did.

I am sure you weren't told you have 30 days to replace your mask, if you are having problems, because that would mean if you returned then someone would have to do something. IF your mask isn't working for you, speak up and do not DELAY. They may try to make you feel like you are the only person who ever had a problem with that mask (or any mask) but believe me, it's not so. Get a replacement.

Some VA's aggressively check the compliance data, so they can take the machine back (and not have to deal with you) while others don't give a hoot cuz - you guessed it - that means someone has to do something

So which VA and which mask are you using?

[GumbyCT]

I just read your reply and don't take this the wrong way but I think anyone who can't breath thru their nose is destined to fail cpap therapy. Certainly, if you can NOT breath thru your nose (while awake) how could you possibly expect to breath thru it while sleeping? Try another mask but you would likely do better with a hybrid mask (nose & mouth together).

Getting the septum repaired might be a good first choice. Learn to search this forum as many here have shared their experiences regarding not being able to use cpap while the surgery is healing.

OSA is a breathing disorder - a sleep breathing disorder.

Everyone reading this, close your mouth and breath thru your nose. How did you do?

Good Luck

ps. Check your PM's

[Janknitz]

Gumby,

Lots of people with deviated septums can still breathe through their noses AND successfully use nasal and nasal pillow masks.

Each person's experience is different. A person with a very significantly deviated septum may not be able to breathe through the nose, but MAY is the operative word here. Since nasal masks and nasal pillow masks are more comfortable and easier to seal, they are always worth a try.

See what this sleep tech has to say about it here: http://sleepandcpap.blogspot.com/2010/0 ... -myth.html

[chunkyfrog]

Fortunately, there are plenty of masks made for people who have nasal issues.
Full face masks, total face masks, and even oral masks exist.
Not everyone can keep their mouth shut at night--many have that problem in the daytime.

[shinyhappy]

Not everyone can keep their mouth shut at night--many have that problem in the daytime.

hehehe!!

I did have a septoplasty surgery about 11 years ago... I've been told that I breathe through my nose when I sleep. My ex used to pinch my nose shut while I was sleeping to get me to stop snoring. Apparently I finally opened my mouth after 20 seconds when I was gasping for air to breathe... I think that's a fairly good sign don't you??

[archangle]

If you can't breathe through your nose, you definitely need a full face or a mouth only mask. Not everyone with a deviated septum is unable to breathe through their nose or use a nasal mask. If you hold your mouth closed, can you breathe normally?

If you sleep with your mouth open, you won't be able to use a nasal pillow or nasal mask, unless you can keep your mouth closed. Many people with nasal masks use a chin strap to keep their mask closed while sleeping.

I'm not sure you need to change your type of mask anyway. Are you having a problem inhaling and exhaling, or is it just leaking too much? Or is the problem just too much pressure? You may be able to adjust the mask you have to work.

Did you get a user manual? It's available online here: http://www.resmed.com/int/assets/docume ... ow_eng.pdf

The manual explains the "mask fit" function to help you adjust your mask. Hold the knob down for 3 seconds and it will blow full force for 3 minutes to let you tinker with the mask.

[GumbyCT]

This is tomorrow nite and is FREE.

For those who didn't understand my previous post, "Ask Dr. Park" his thoughts on breathing thru your nose -
viewtopic/t63884/Ask-Dr-Park-How-To-Cle ... -Nose.html

This is time well spent for new and old alike. Take a DEEP breath

[GumbyCT]

Gumby,

Lots of people with deviated septums can still breathe through their noses AND successfully use nasal and nasal pillow masks.

Each person's experience is different. A person with a very significantly deviated septum may not be able to breathe through the nose, but MAY is the operative word here. Since nasal masks and nasal pillow masks are more comfortable and easier to seal, they are always worth a try.

See what this sleep tech has to say about it here: http://sleepandcpap.blogspot.com/2010/0 ... -myth.html

Jan I've taken the time to read your link, you should also read it; then kindly show me where this tech and I disagree, if you can.

Not everyone can keep their mouth shut at night--many have that problem in the daytime.

hehehe!!

I did have a septoplasty surgery about 11 years ago... I've been told that I breathe through my nose when I sleep. My ex used to pinch my nose shut while I was sleeping to get me to stop snoring. Apparently I finally opened my mouth after 20 seconds when I was gasping for air to breathe... I think that's a fairly good sign don't you??

I think that demonstrates exactly what I was trying to say. So your deviation has been repaired then? I didn't understand that in your 2nd post.

Please don't misunderstand me, the less skin contact the easier a mask is to seal. I never said one should not try a nasal or pillows mask. Do listen in to Ask Dr Park tonight.

Good Luck

[GumbyCT]

Anyone who listened to Dr. Park last nite have any comments?

[LinkC]

Didn't do Dr. Park, but I'll go on record as a big fan of nose-breathing. It's what we were designed to do.