Kathi, so sorry for the frustration you are feeling. Keep your chin up and keep asking questions. As for the sleep study you had, that is only one night and does not necessarily reflect how every night is for you. Some say that is why an AutoSet is so nice because that will determine and change pressure according to your needs.
Normal range for AHI under 5 and leaks under 24L/min. You also want to consider how you are feeling. And it is clear that you aren't feeling better yet. Some that have very high AHI may have trouble getting to normal range or getting there early on in therapy. But you have the right idea that you want to strive for that and push for it. You don't want to just settle if you can make it better. You are doing the right things asking questions and arming yourself with knowledge. Since I have begun therapy 6 months ago I have been over 5 just a handful of times but I can usually determine reasons why. I have learned so much from this forum and researching. Sometimes you will run across other threads where you will read something that describes a problem you are having and there might be some valuable information and encouragement.
Keep asking questions, learning and most of all stay encouraged.
05-16-2014, 06:06 PM
(This post was last modified: 05-16-2014, 06:08 PM by kderevan.)
Thank you all. The first thing I'm going to do is study up and change the pressure myself. Then I will think about pushing for the apap machine. If I have to I will buy one of the open box ones myself.
My PCP did sign the prescription for the equipment, but it was written by the sleep clinic people.
(05-16-2014, 02:33 PM)Bama Rambler Wrote: Your numbers for last night (hypopnea 1.18, obstructive 8.03, and CA .75) are a little higher but the ratio mimics the night before. I suggest that you raise the pressure yourself, but you'll have to decide if you're comfortable doing that.
Since the PCP wrote the script for the machine I assume they also wrote the pressure on the script. If that's the case I might consider calling them and telling them what numbers you're seeing and ask if they're ok with you raising the pressure a little yourself. They probably will be fine with it.
However, if it were me, and they weren't, I'd go ahead and change them anyway, but I can't tell you that's what you should do.
(05-16-2014, 01:39 PM)kderevan Wrote: Well, retired_guy, I am thinking this is what I should do. Honestly, I am so frustrated and near tears over this. I went to this sleep lab and put myslef in their hands for diagnosis and a treatment plan. When the treatment plan doesn't seem to be working quite as well as it should, I call them to ask for help, and instead of helpful suggestions, I am accused of breaking the law and then told that AHI's of 4-9 seem "pretty good, actually." Well, maybe that is pretty good, I don't know. I'm new to this. But since "normal" is supposed to be 5 or less, I'm thinking I would at least like to be in the normal range every night. Is that unreasonable? That's not a rhetorical question--I really want to know if I'm expecting too much. I can't trust the DME guy to be honest with me, which is a damn shame. THEY know all this stuff--they have been in business for 15+ years. I was truly hoping to have a partnership with them for the long term to get this apnea thing under control. Instead, I'm tired, cranky, not thinking straight, and don't know where to turn (except HERE and thank goodness for this place!).
I don't want to be underhanded or screw anybody--I just want to be treated adequately so I can wake up and think straight. If I get my PCP to write the prescription as you said, how does that work with the insurance company and all? They are renting my machine, so it seems like it would be logical to assume that any time in the first 10 months (the rental period) the DME might expect to have it returned. Certainly, if the insurance company found that I wasn't complying with treatment, they would take the equipment from me and return it. The DME told me that I had to be 70% compliant for the insurance to pay. I have been 100% compliant--my stats show a bit less than that, because I had a few sleepless nights this week after trying to quit ambien, so no sleep=not enough hours on the cpap. That is 2 days out of 70 that I haven't put in the required hours on the machine.
Sorry I am rambling. I am a confused mess. I want to call the DME again and tell them how disappointed I am, now that I've had time to think about it, that they are so unhelpful. But I doubt they would care. Also, I'm supposed to send in my SD card for them to read, but I don't know if I trust them to even do that right.
(05-16-2014, 01:58 PM)kderevan Wrote: I am sorry to seem like I'm asking the same questions after I've already had good answers. I truly feel like I can't think in a linear fashion right now, from lack of sleep and sheer frustration!
Do you mean I should just go ahead and raise the pressure myself? I understand there are instructions on the site for that. So it seems that I can't count on the DME for any help--I guess I should have known that!
Kathi, all of this stuff and nonsense will work out for you very soon. Just try to un-stress and know you're doing just exactly what you need to be doing.
So yes, by all means go have a quality conversation with your GP. There is no reason on earth why he should not simply write a prescription for an automatic machine for you.
Then, by specifying a limited range around your current pressure of 11, you can use the machine to explore what is right for you, in your own home, in your own bedroom.
The other thing I would do when you get your machine, and the DME dipstick should be more than able and willing to do for you, is to set the EPR on. This feature makes it a little easier to breath out by reducing the pressure on exhale. I think this would be beneficial for you because the one concern I have seeing your current numbers is you are already experiencing central apneas. Sometimes when you start moving the pressure upwards the obstructives will go down, but the centrals will go up. In my completely uneducated opinion setting the EPR on may help ease that transition.
I would agree that a small increase in pressure on your existing machine would seem to be an acceptable thing to do at this time. My only concern is we don't want to simply trade obstructive for centrals, so keep the increase small.
But mostly go see the doc. Get the prescription and let the DME sort out the issues with the insurance company. That seems to be what they like to do best anyhow.
Just agreeing with Retired Guy for reinforcement. Make a small adjustment, watch it a few days to see what effect it had and then make another one if everything looks good and you think you need it.
If you do get him to switch, be sure to get an S9 AutoSet, not an S9 Escape Auto. The Escape Auto records a lot less data than the AutoSet.
Actually, you're lucky you got an Elite instead of an Escape to begin with. As for not getting the AutoSet instead of the Elite, you can't blame the DME that much. It's more of your doctor's job to specify auto pressure therapy to get an auto machine instead of just specifying 8 cm CPAP.
While I think everyone should get an auto machine and then have it correctly adjusted to the right therapy based on the data collected, the AutoSet vs. Elite does you no good if you use fixed pressure. The doctors should be watching out for the patients' best interest here. I think they're falling down on the job here.
Get the free SleepyHead software here
for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.