What info should be given?

I'm a brand, brand new "newbie" with Kaiser No. Calif as my provider. I can't help but feel after reading the "new user" info and some of the posts that my diagnostic experience and follow-up was less than ideal. Would someone tell me what I'm missing here? After complaining to my internist about dragging around exhausted day after day and family telling me I snore loudly, Kaiser had me take a machine home to test with the finger sensor overnight. I returned it to Kaiser the next morning. After waiting two weeks I had a message left on my VM to attend a 15 minute "class" at Kaiser. No mention of the outcome of the overnight results. When I presented myself for the "class" along with six other people, I was told my "number" was sixty, given a loaner CPAP and a nasal mask. I was told NOT TO TOUCH any buttons but just plug it in and sleep with it on for 3 nights then return it again to be "read". I did. Another two weeks and I received a VM message directly from Apria to come in and pick up my CPAP. Upon arriving at Apria I was unceremoneously handed a cardboard box containing a CPAP and case and a nasal mask. No explanation, no consultation, no nothing. When I asked if I was going to get any direction they told me to just push the blue middle (start) button when ready to go to sleep! Am I crazy or is there something missing here? (By the way, I have had NO contact whatsoever from my physician since my initial complaint of being exhausted.) Where should I go from here and what should I be asking?

What a bummer!!! Shame on them! I had a 60 min session with the sleep clinic tech to go over using my CPAP, selecting a mask (I liked the one in my sleep study), cleaning everything, answering questions.

Welcome to the forum.
Looks like your best bet for information is going to be here. You were really left high and dry by everyone.

Can you add your machine and mask information into your user account profile so that someone can start explaining things.

The overnight finger thing sounds like a pulse oximeter which measures Oxygen levels in the blood. The "60's" number may have been reporting that your O2 levels with down in the 60 % range (above 95% normal). I dropped to 73% and others have reported lower. This happens when we have the apnea events and stop breathing because we don't circulate any oxygenated air.

The 3 day trial with CPAP of some sort was likely to get a pressure setting for treating the events. Most likely you had an auto cpap with varying pressure levels. They read the data then someone decides which pressure seems to give you the "best" results and you get handed a machine likely set at that pressure.

Looks like you are going to have to self educate yourself. It really isn't hard and in the long run you will likely do much better than blindly following your meager instructions. Start reading and start asking questions. Someone will chime in to try to answer and clarify things as they pop up.

Good thing you found your way here. Like Muse, my the RT at my DME spent over an hour with me when I started.
You will find a lot of help here. Even with a decent DME, I needed a lot more information. Read everything you can find. Fill out your profile so the experts here can help you.

Good luck and welcome to the board.

Cecile

pilates1 wrote:I can't help but feel after reading the "new user" info and some of the posts that my diagnostic experience and follow-up was less than ideal.
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Where should I go from here and what should I be asking?

First, check the full name of the machine you were given by Apria, and tell us the full name of the machine. Name will be written on top of the machine.

You can compare the name of your machine against the names in the list here:
My list of machines that record "full data" (AHI and leak info) and those that don't -- as of October 2008:
viewtopic.php?p=307168#p307168

Since you mentioned a blue middle button, my guess is they gave you a Respironics REMstar Plus M series machine. A model that provides only "hours of use." But maybe I'm wrong, and you were lucky. What machine did they give you?

pilates1 wrote:Am I crazy or is there something missing here?

There was a lot missing in the way Kaiser and Apria are handling things. On the good side though, you've found this message board. You may want to do what many of us do... handle your own treatment yourself. Information on this message board can help you do that.

pilates1 wrote: Where should I go from here and what should I be asking?

Welcome Aboard! You've come to the right place.

It sounds as though you've been given an at-home sleep study. Data was collected during this study and was stored in the instruments that you used. The DME has downloaded this data and hopefully, has provided it to your doctor. The doctor has used it to diagnose you with sleep apnea and to prescribe a CPAP for you.

My recommendation is that you see your doctor and ask for a copy of the reports that were generated from your at home sleep study. These reports will give you information such as your O2 levels, apnea-hypopnea events, and cpap pressure. The reports are yours, so don't take NO for an answer!

Also ask your doctor for a copy of your prescription. CPAP machines require a prescription. While you may not need the prescription now, you may find it useful later, for example if you wish to order equipment from an on-line supplier.

Finally, post back here with what you find out. There's a wealth of information and support available to you at cpap-talk.

Gads! It seems every time I read a post about someone having Kaiser in CA its enough to make me shudder. What is even scarier is reading the Kaiser Foundation mentioned time and time again in articles about how to improve our health care delivery and reduce costs and I wonder if there is any connection between the Kaiser HMO and the Kaiser Foundation. Heaven help US health care if they are!!! From what I've read this Kaiser HMO is a model of what we don't want or need for healthcare in this country!!!! And why is it no surprise that Apria is the equipment provider?

pilates1 wrote:Am I crazy or is there something missing here?

No you are not crazy and yes you are missing something called support.

Many of us have some measure of a lack of support somewhere along the way with the apnea issue.

I'm one of those with zero support except for my primary care physician who doesn't know enough about about apnea to discuss the details of therapy but he does know enough that upon hearing my symptoms immediately schedule me for a study.

The best is to take charge of your therapy, learn about it and spend some time getting your therapy dialed-in. This forum will be of tremendous assistance to you.

Paul - it ain't just support that is lacking, it's everything else too.

That includes a meaningful diagnosis procedure and a meaningful titration which leads to no meaningful feedback in any and all aspects of this.

I too am a Northern CA Kaiser member. My experience being diagnosed and getting my machine earlier this year was much better, and I'll share it.

1) After my doctor referred me for the sleep apnea appointment, I went to a "class" with about 10 other people where we were instructed in the use of the fingertip monitors which we took home and returned a day or two later.

2) Next, I received a letter in the mail that said I was diagnosed with sleep apnea and gave a date to go back in to Kaiser. I attended another "class" where I and about 6 other people were given the printouts of our results and were informed fairly thoroughly about what it all meant. (We could go to the Records dept. to get the printout to take home if we wanted, which I did.) We were all issued a machine and mask (I got a nasal pillow) to take home for a week and instructed in how to use it. All our questions were answered and I felt we got good info. Before we left we signed up for the next "class" where we would return our equipment.

3) Lastly, I returned the equipment the next week at the scheduled session with about 3 other people. Here the data card was read and a print out given to each of us and explained, and again we could request a copy from Records. We each had a chance to discuss how it went for the week and ask any questions or voice concerns. The staff couldn't have been more helpful and they encouraged us to get back to them if we had problems. We were sent home to wait for a prescription to come in the mail so we could obtain our own equipment. The people who had DME coverage would get their equipment from Apria which is Kaiser's equipment partner.

Of course, I did a lot of research on my own starting when I found out I would need treatment, which helped round out the info I got from Kaiser.

My Kaiser plan does not include DME coverage so I had to purchase my own equipment. Kaiser faxed me the prescription so I could get it quickly and I've since emailed the Pulmonary Specialist several times with questions which she promptly answered.

The sleep clinic I went to was newly formed at this particular campus and I'm glad I got the benefit of it. I feel I got good service and can go back to them if needed.

Now I have a Respironics RemStar M Series auto with A-flex and a heated humidifier (which I purchased lightly used at half the price of new), and a Mirage Swift LT nasal pillow. When I purchased the machine I had a long discussion with the online seller and am quite happy with it.

Good luck and don't be afraid to get back to the folks at Kaiser or Apria if you have any questions! It sounds like other people here have given you some good advice too.

Make an appointment with your regular doctor as suggested and get a copy of the report. Then get a referral to a pulmonary specialist and an ENT. Bring your report to them and get a qualified person to follow your treatment.

The idea that you can be diagnosed and given a prescription without actually meeting the doctor to me doesn't even sound legal or ethical.

The sleep study is the kind I had but from a hospital clinic specializing in breathing disorders with everything totally explained. It was probably more comfortable then sleeping at a sleep lab.

jules wrote:Paul - it ain't just support that is lacking, it's everything else too.

That includes a meaningful diagnosis procedure and a meaningful titration which leads to no meaningful feedback in any and all aspects of this.

Definitely agreed on that!

Thank you all so much for your replies and kind words. As suggested, I emailed my physician first thing this a.m. and asked for my test results and prescription. I'm sure I'll be posting here again for help to decipher the info I'm given! As a newbie I'm finding the vast amount of information I'm reading on this forum to be soooo confusing but am determined to just keep reading until it begins to sound like a familiar language! Right now I'm just feeling resentful to have to even deal with this (whine, whine) but can see I'm in good company

pilates1 wrote: Right now I'm just feeling resentful to have to even deal with this (whine, whine) but can see I'm in good company

Time to put the whine bottle away....
and get down to business.

Educate yourself....here.
Ask questions....here.
Get answers....here.
Become your own best therapist.

Welcome to your new life.