Brand New and Terrified

[R1200ST]

Welcome to the forum and you have found the right place. The one item that doctors do not discuss is finding a support group to help with the adjustment. This group here has been a God send in support for thousands of new users, and those people like yourself who have been lurking.

4 months in for me, and I am doing much better, and I have lost about 5 pounds, just because I have more energy to spend on exercise.

Stay with it. You will do great

Rich

[ChicagoGranny]

The one item that doctors do not discuss is finding a support group to help with the adjustment.

+1

[guttersnipe]

Any particular machines to watch out for? Or anything I should definitely ask for?

I wake up congested quite often, does this mean I wont' be able to get a nasal pillow mask? So many questions!

[Roman Hokie]

Welcome to the support group. I can't help but wonder if sleep doctors and RTs might benefit from partnering with folks to start up local support groups, not unlike AA or NA. Seriously. Not that we have an "addiction" to getting better sleep (some of us might ), but that these other groups share their experiences in maintaining better and healthier lives and relationships - by virtue of having someone else understand what they've already experienced.

I'm glad this little band of hoseheads is here. I had some great (offline) friends who called me on my "sawing wood" and gasping for air 8 years ago and told me to get it taken care of. 2 years later, I did, after I ended up with acid reflux in the middle of the night (a frequent sign of OSA). I had no idea what I was getting into, but 6 years ago (almost!), I got my sleep study.

The biggest thing that I learned from the fine sleepers and breathers here is to advocate for myself. Very little is as empowering when speaking with a medical professional as the phrase "I need" or "I wan't" (often coupled with "that isn't working for me".

The second biggest thing I learned is that all change is worth grieving. Denial, Anger, Bargaining, Depression, and Acceptance are all present. How quickly (and authentically) we can get to Acceptance makes all the difference in the world. I was lucky (kind of) in that I went through all of these BEFORE I got my Rx. It's been 5.5 years and I have not missed a single night of CPAP therapy as long as I had electricity (one night we lost power)...

I'm on my 2nd machine and keeping the first as a backup. Right now, my insurance pays 100% without deductible or copay. Helps to work for a hospital.

I love my nasal pillow mask (I have the Airsense 10 with the P10 mask). The nasal mask didn't push air through my congestion like the pillows do.

It's okay to be new and terrified. Absolutely. It's a new thing for you. And something you probably feel like you have little choice over. So, be terrified. And keep being honest and real about it.

[OkyDoky]

Any particular machines to watch out for? Or anything I should definitely ask for?

I wake up congested quite often, does this mean I wont' be able to get a nasal pillow mask? So many questions!

I would stick with Resmed or Respironics. Here is a link that you can look up the machines. Any that have a Red NO are not full data capable. You do not want them. Just search by manufacturer. https://sleep.tnet.com/cmd
As far as the congestion, some people find the nasal pillows help, some use a saline wash before bed. If you have some structural difficulty that bothers you through out the day and find yourself mouth breathing that might be a reason for a FF mask.

[Hang Fire]

I can't help but wonder if sleep doctors and RTs might benefit from partnering with folks to start up local support groups

It's been tried in a big way - http://sleepapnea.org/support/a.w.a.k.e ... k-map.html

It's mostly a failure. You can't get but a few people to come to the meetings. Then, it's one meeting, max two, and they don't come back again. It's inconvenient and clumsy.

On the other hand, this support group (cpaptalk.com) is convenient, cheap, available 24x7 and has more resources than you could every imagine at a local support group.

[russmac]

It's natural to be scared. Yes, it would be nice not to have to use a machine to sleep, but the benefits outweigh the hassle. It takes a bit of time and then it's second nature, at least it was to me.

The sleep study was miserable, and I have no idea how they decided what pressure to use. I'm pretty sure I didn't sleep at all. I should have known to look online, but it didn't even cross my mind. I wish I had known about this site 4 years ago when I got my first machine and mask.

After the sleep study came back I met with the DME, and I was shown how the machine (F&P Icon) worked. I was also asked to pick a mask. I think this is the tricky part because the mask you use depends on what your needs are, as well as what your preferences are. I don't remember which mask I chose, but I hated it when I got it home. It seems like it was a nasal mask because it at least covered my nose. It seemed to leak with the slightest movement and it made the skin on the sides of my nose break out no matter how much I cleaned my face or the mask. I went back to the DME for help and they showed me a ResMed Swift FX mask. It touched only my nostrils and was much lighter. For me it was the right mask. No major mask problems after that. But, just because one person loves a particular mask doesn't mean it is right for someone else.

I think I paid $1800 for that machine and mask, out of pocket because I hadn't met my deductible yet. It was a shock to me and gave me a bad feeling about the DME. I didn't know of other options, so I paid it off in installments. As a consequence of the high price, I never went back after the initial followup visits. Each time they would call about supplies I told them I didn't need anything. I figured each little bit of plastic was going to cost me a bundle and at the time I was very low on money.

I was careful and used the same mask and pillows for 4 years. It actually performed very well, though I had to nurse it along after a while. I saw much better prices online, but figured I would need a prescription and didn't want to hassle with doctors. It was easier to just live what I had. I wish I had been more proactive earlier on to find out what was possible.

Circumstances changed late last year when I started to see signs of trouble with my machine. I knew it would need replacement soon, and I also wanted to get my mask replaced. The DME no longer took my insurance, so they gave me a copy of my sleep study material (yay!). I highly recommend getting copies of your prescription and sleep study documents. I hadn't known I could request them. My old machine died this Christmas on vacation before I could see the doc and I was 2500 miles away from his office. I wasn't about to go 3 weeks without sleep, so I scrambled to find a local doctor and supplier. That day I had a new machine and mask.

The whole process was actually a liberating experience. I realize now that I'm not tied to my doctor, who doesn't really know anything about my sleep situation anyway). If I have my sleep study I can get a prescription easily from another doctor. I'm also not tied to any particular supplier. I needed the replacement machine ASAP, so I paid out of pocket again, but got a much better price. I also found that spare mask parts can be purchased online without a prescription. I'm a happier camper knowing I have some control over the situation. I tried the ResMed AirFit P10 mask this time and I love it. I also love the data capability of my new machine. The introduction to SleepyHead software made it possible for me to make my own pressure adjustments, since I can see what is happening at night.

[guttersnipe]

Been doing a ton of reading, getting educated and ready for this next step.

The worst part of it is the waiting. i want to go talk to them NOW, so that I don't end up going in and wasting my time with them trying to give me a machine I don't want. Maybe I should call ahead?

Also I am SO aware of how poorly I am sleeping, that I feel like I am in hell.

[OkyDoky]

to give me a machine I don't want.

Just remember the DME does not giving you anything. You pay for insurance and you pay your copay. If you are not happy, don't sign on the line until you are. Know what DME's are in your insurance network and change if you aren't satisfied.

[ChicagoGranny]

Also I am SO aware of how poorly I am sleeping, that I feel like I am in hell.

Until you get your machine, do whatever you can to totally avoid sleeping on your back. This may give you some relief. Generally, obstructive sleep apnea is worse on the back as compared to sleeping on the sides or stomach. It's because gravity is directly pulling your tongue and soft palate into your airway when sleeping on the back.