Sleep Study Done - Update

[Madalot]

I have no idea what to make of it. Sadly, I'll probably be waiting 7-14 days to find out what my doctor will make of it.

The Tech/RT was as nice as he could be, confirmed the order was correct and chatted about my situation for quite a while. He expressed surprise and appreciation at my being his first really knoweldgeable patient. He explained that he really wasn't allowed to tell me anything, even though he would want to after realizing how much I understand. We had an agreement that he would try to tell me what he had done so at least I would know that much.

Lights out around 10:00. The first thing I noticed was that even though he said the backup rate had been lowered to 7, it was faster than what my equipment does on that setting and was not comfortable. I had a lot of trouble falling asleep and debated calling him. I eventually dozed off laying on my left side. I turned on my back for a while, but it wasn't very comfortable and as far as I know, didn't fall asleep. Finally turned over on my right side and did fall asleep. It seemed like a short time later I woke up and started to turn back to my left side when he came in and asked me if I would stay on my back for a while. I did and again, didn't feel like I slept, but I probably did doze off. He came back awhile later and asked if I would be willing to lose one pillow and lay more flat (still on my back), which I agreed to do. It was more difficult to breathe, but not enough to make me do anything about it.

During the time I was on my back, I realized at one point that it *seemed* as if he had me on straight bipap. There wasn't a backup rate going at that point - or if there was, it was so slow I couldn't tell. Perplexed me, but I just tried to go back to sleep.

He came back a while later and told me I could turn over on my side again if I wanted, which I did IMMEDIATELY. And I did fall asleep. I woke up later, mid dream (which I hate) and found the pressure higher than it had been. I noticed it immediately, but it backed down after a minute or two.

He came in a few minutes later and said it was almost 6:00, so basically time to get up.

While he was unhooking me, he didn't say much. He reiterated that he wasn't allowed to which I understand, but he seemed reluctant to honor our agreement from the night before. I was pretty sure he hadn't but did ask if he had switched to the ventilator -- he said he had NOT.

The only thing I could get out him was that my study surprised him a lot (how so he wouldn't say). He said I slept most of the night and that while on my side, it was smooth sailing (his words). Once I got on my back, it got "interesting." I did ask him about the backup rate and how it seemed higher than 7 and he said "only slightly" and I asked about that last awakening and he confirmed the pressure was a little bit higher, but not horribly and that the machine was supporting me at that point exactly like it was supposed to.

He made it clear, politely and you could see with remorse, that he really wasn't comfortable telling me anything more.

Overall, it went okay even though I felt I was awake a lot. He was very nice, seemed to know what he was doing. Something from last night surprised him enough that he did not want to tell me much of anything and said I really need to wait to see what my doctor says.

So, I have no idea where things are.

[robysue]

With the RT's description of the study being "interesting" it sounds to me like some useful and insightful data about what's going on was indeed collected. And if that's the case, then while it will be difficult to wait for your sleep doc who's been willing to try different things to keep you off the invasive vent (if I recall correctly) to read the data and decide what to recommend, in the long run it sounds like you might finally get a few answers instead of more questions about your special situation.

Best of luck Maddie

[Rebecca R]

It must be good to have the sleep study over and done with. Now it's back to waiting...

[scrapper]

Sounds like wonderful news at this point.............he doesn't sound totally inept or perplexed.

Can't wait to hear!

[Robespierre]

You finally had your sleep study!! It certainly took a looong time and an outrageous amount of hassle to get to this point. I surely hope the results yield lots of useful answers. Looking forward to hearing those results!

[Madalot]

Thank you robysue, Rebecca R, scrapper and Robespierre, for the replies. I think you know how much I appreciate the support, but I think it's nice to hear it too.

I understand that the tech/rt really isn't supposed to say anything and respect his right to say less than he said he would. Unfortunately, his doing that has really sent my mind reeling because I really have absolutely no clue what he found or what it means in his mind. Being that he's also an RT, I feel his impression is probably fairly accurate. But I couldn't get any read at all as to what he's thinking.

But I don't have a good feeling about it. And even though he said I slept pretty well, I feel like I slept horribly and feel like crap today. I'm tired and cranky - and now that I've had time to digest his comments (and lack thereof) -- I'm depressed.

Oh well. Been here before. Will be here again I guess. Nothing I can do about any of it until I hear from my doctor, whenever that happens.

[jbn3boys]

I'm sorry you are so down, Maddie, but I'm also so thankful that your sleep study is finally behind you! I'm hoping that when the RT said it was "interesting", it is only because he has not seen someone with your unique condition. It may have fascinated him how your body can work to help you to breathe, even if your diaphragm is not working properly. I would say it is a GOOD sign that he did not trial you on the vent! Try to focus on that, and not that he changed his mind (apparently) in sharing with you what the night was like. Maybe he never really intended to tell you any more than he did, but just indicated he would so that you would sleep better.

I know how much you hate waiting! We all do. Just remember how long you had to wait to get to this point, and now the sleep study is done. The next 7-14 days will seem long, but only until you get the results.

Hugs and prayers for you, Maddie! Hang in there, my friend!

[HoseCrusher]

The purpose of conducting a test is to gather information. The fact that the information gathered was "interesting" is... INTERESTING.

Now the question of what it all means needs to be answered. I hope that answer comes soon and it provides direction.

[BleepingBeauty]

I'm glad it's over, and I'm really glad that it seems to have been very productive.

We're all waiting with you, Maddie, to hear what the doc's impressions are. As someone else said upthread, you've waited forever to get to this point; another week or two is nothing. Try to focus on the positives - the test is over, the tech seemed to indicate that good information was had, and you're moving forward. Hopefully, something from the study will jump out at the doc, and she'll have an "Aha!" moment where your treatment needs are concerned.

Hang in there, girl. Take a nice long nap today and do what you can to keep your spirits up. (Sounds like a good time to have a nice big bowl of vanilla ice cream with some cantaloupe. Enjoy!)

[Breathe Jimbo]

It is a good sign that he did not need to go to the ventilator. That it was "interesting" under these circumstances should mean that he gathered useful information for your sleep doctor about non-ventilator options. Sounds good.

[scrapper]

Madalot: But I don't have a good feeling about it. And even though he said I slept pretty well, I feel like I slept horribly and feel like crap today. I'm tired and cranky - and now that I've had time to digest his comments (and lack thereof) -- I'm depressed.

QUIT WORRYING ABOUT TOMORROW, EACH DAY HAS ENOUGH TROUBLE OF IT'S OWN.

Be positive dear friend! You don't know anything yet........

[Madalot]

Madalot: But I don't have a good feeling about it. And even though he said I slept pretty well, I feel like I slept horribly and feel like crap today. I'm tired and cranky - and now that I've had time to digest his comments (and lack thereof) -- I'm depressed.

QUIT WORRYING ABOUT TOMORROW, EACH DAY HAS ENOUGH TROUBLE OF IT'S OWN.

Be positive dear friend! You don't know anything yet........

Yeah...I hear that. I am just really, really tired. I find it a bit aggravating when they say you had a good night, but you felt like you were awake almost all of it. Maybe I was asleep, but I sure didn't get well rested....

I can barely stay awake today....

[robysue]

But I don't have a good feeling about it. And even though he said I slept pretty well, I feel like I slept horribly and feel like crap today. I'm tired and cranky - and now that I've had time to digest his comments (and lack thereof) -- I'm depressed.

Could simply be that all those "tech came in and said to ...." moments in the sleep study are catching up to you: I know they would me. And who knows, maybe there's something in the data that indicates when and why you were sleeping decently at some positions or tmes and when and why weren't at others. There's got to be a reason he kept coming in with his requests even though they clearly were disruptions to your sleep.

[archangle]

Well, a sleep study is a test. If you slept the whole night and they never adjusted the pressure to the point where you had any sort of a breathing problem, they wouldn't really learn as much, would they? To find the level at which problems occur, you sort of have to have some problems occur, don't you?

[Madalot]

But I don't have a good feeling about it. And even though he said I slept pretty well, I feel like I slept horribly and feel like crap today. I'm tired and cranky - and now that I've had time to digest his comments (and lack thereof) -- I'm depressed.

Could simply be that all those "tech came in and said to ...." moments in the sleep study are catching up to you

I was already awake every time he came in, plus a whole lot more. I felt I was awake as much (if not more) than I was asleep. I NEVER sleep that badly at home. At home, I fall asleep quickly, wake up a lot, but go right back to sleep. Last night it was struggling to get to sleep, then waking up and staying awake again, then repeat the cycle. My worst night in the last year and a half at home doesn't compare to last night.

But he said I had a good night. Maybe with his experiences that was a good night, but it wasn't to me.

But being this tired is never good for your mood.