My recent xPAP experiences in the hospital

As some of you know, I recently spent 11 days in the hospital (two different hospitals, actually) with pneumonia and COPD. My experience with using xPAP while hospitalized was both expected/somewhat infuriating and then surprising (with the possible result of finding a good new sleep doc).

Quick background: I was diagnosed in late 2007. Have had two sleep docs in the past seven years, the first one useless, and the second had solid credentials but ended up retiring before we were able to enjoy a good doctor/patient relationship. I've been managing my therapy on my own for the past five years or so with the help I got here, and I've done very well with that.

In the first (local, very small) hospital, where I was admitted through the ER and ended up using the hospital-provided xPAP during my stay, I casually asked the senior RT if I could obtain a copy of the data from the machine to see how well I was sleeping in the hospital. He gave me what I've come to find is the typical response by someone in his position: No, it's the hospital's policy NOT to provide that information, that it might be a liability for them (?), and the attitude in general that I'm just a user, and I shouldn't be looking at the data, that my managing my therapy without a sleep doc in the loop is dangerous, etc. I went through the whole comparison between someone using an xPAP being told how dangerous it would be to change the pressure settings without a doc being involved as opposed to a diabetic being encouraged and taught how to manage their use of insulin to treat their diabetes daily on their own. If I screw up my settings, i might feel like I'm breathing inside a hurricane, but I'm not going to hurt myself; a diabetic who's injecting a drug that could have serious negative consequences if they mismanage their care is another matter. xPAP therapy is just administering AIR, for crying out loud... He did pause when I made that argument, but he stood by his "training" (brainwashing?) that what I was doing on my own with therapy was not a good idea. Whatever.

The conversation raised my hackles, and my thought process was, "That data is part of my medical record, and F.U. if you think I can't have it. You can bet your ass that HIPAA will see to it that I'll get the info." (I get very defensive about my ability to manage my therapy, if that's not clear. )

I asked a second RT about it, and he said the last time they'd used this hospital xPAP was a few months earlier, that nobody had ever asked for the data before, and he didn't think they even had the software to read the card and get that info. For me, it was simply a matter of curiosity to see the data. When this second RT made it clear that my request was out of the realm of what they were accustomed to, I decided that it wasn't a fight that was worth having, so I let it go. No big deal.

Then I was transferred to another (larger) city hospital, and my neighbor was kind enough to bring me my own machine to use. I had a consultation with a pulmonologist there (who also happens to be Board Certified in sleep medicine - which, considering my past experience, means very little if sleep medicine is secondary in their practice). Anyway, when he first came into my room, he noticed my xPAP next to the bed and questioned me about it. The conversation went something like:

Him: Oh, I see you use a CPAP machine.
Me: Yep. Almost seven years now.
Him: Excellent. Who's your sleep doctor?
Me: I don't have one.
Him: Really? Then who manages your therapy?
Me: I do.
Him: (Puzzled, concerned look). For how long?
Me: About the past five years.
Him: How do you know what to do with pressure settings and such?
Me: I joined a great forum online several years ago when I was frustrated by the lack of help with the therapy that I was receiving in real life, read as much as I could, asked a lot of questions, and learned what I needed to know about becoming successful. I download my data every week and look for anything that stands out as needing attention. (I then pointed to my laptop on the table in the hospital and told him I have weekly data downloads from the past several years right there, if he'd like to see how my therapy is going.)

He still looked a bit muddled by the conversation, but I let him know that I did not appreciate being made to feel that I couldn't possibly know enough about therapy to manage it on my own. I became a bit defensive with him, and I ended up apologizing to him the next day for my attitude. I explained my former experiences with sleep docs and the little help I received from sleep medicine professionals in general, and I told him that I appreciate and respect his schooling and his knowledge, but that I expected the same level of respect from him for what *I've* learned about therapy over the years and for the effort I've made to handle my own care. He surprised me then by acknowledging that most patients just want the doc to handle everything, that they're content to do what they're told with a pat on the head, and that a user like me is a rarity. He said he appreciates it when someone cares enough to be so involved in their own healthcare. So we came to a place of mutual admiration, and I liked him a lot more.

Long story short: I have a follow-up appointment with him in a month to further investigate a nodule they saw in my lung (to see if it's shrunk or grown since I was hospitalized and determine what to do about it from there) and, when we were setting that appointment up, he really floored me by asking me to bring several weeks' worth of xPAP data with me so he can see how my therapy is going. I've never had anyone ask to see my data.

I have really high hopes for this possible future relationship. I haven't felt the need to have a sleep doc because my therapy is going very well and I don't have any problems with it, but it would be nice to have a good sleep doc (if only on paper for the most part, but someone familiar with my situation) just in case there's an issue down the line that I want to discuss.

We'll see how the follow-up goes next month, but I feel really good about it, and I trust he'll be duly impressed with my data.

Good job!

ChicagoGramps

Well, I can't top Chicago Granny's video but glad you've found a place of peace with this doctor. Hope he's a help to you. Just hate to hear all you're going through. Thinking of you. Keep us posted.
Kathy

Thanks to both of you.

I was pleasantly surprised and hope I can say the same after my follow-up with him next month. If not, it's no loss, as I haven't had a sleep doc in a long time now and will just continue on my merry way. But if it works out well, I'll be really happy to have him in my corner.

I'm doing much better. Not there yet, but able to breathe without pain. I'm still on Prednisone (which I've come to despise for several reasons, one of which is that it's absolutely ruining my sleep), and I have to be on it for another two weeks. I told myself that I was sleeping so poorly in the hospital because it wasn't my own bed, my own pillow, there were interruptions all night, it wasn't dark and quiet like it is at home, etc., and I was sure that my sleep would greatly improve as soon as I was back in my own bed. But I came home last Sunday, and the poor sleep has continued. I literally feel like the walking dead each day, falling asleep several times for short periods (which is much like my nighttime sleep in that it's short-lived and never feels like a deep sleep, so I don't feel refreshed afterwards). I'm worried about driving, as I once again feel like I did before I was diagnosed and began treatment - almost like I'm hypnotized on the road and don't remember getting from A to B. So I'm staying home and driving as little as possible (and when I *do* have to be out, I'm only driving a short distance to the local grocery to replenish perishables).

It'd be really interesting to see what's actually happening to me re: sleep stages, but I don't own a Zeo or anything similar. My data (what little there is) looks fine - AHI under control, as always, with the graphs looking pretty clean, but very little time spent asleep. I'd certainly not meet compliance requirements right now...

The only positive aspect of the Prednisone is that I'm on a weaning dosage. As far as I know, I was taking it for the duration while I was in the hospital. For the past week here at home, I've taken two pills a day. This week, I take just one each day, and next week is just a half a pill per day. Hopefully, the lower doses this week and next will make a positive difference and my nights will be better.

Fingers crossed, as I really MISS my good sleep!

Two days ago, when I told the manager of the grocery store where I shop that Drake the cashier did a good job tying the chicken noodle soup from the salad bar to prevent it from spilling in my car he then started to clap his hands like this and said loudly: BRAVO; BRAVO;BRAVO!

BleepingBeauty wrote: I'm still on Prednisone (which I've come to despise for several reasons, one of which is that it's absolutely ruining my sleep), and I have to be on it for another two weeks. I told myself that I was sleeping so poorly in the hospital because it wasn't my own bed, my own pillow, there were interruptions all night, it wasn't dark and quiet like it is at home, etc., and I was sure that my sleep would greatly improve as soon as I was back in my own bed. But I came home last Sunday, and the poor sleep has continued. I literally feel like the walking dead each day, falling asleep several times for short periods (which is much like my nighttime sleep in that it's short-lived and never feels like a deep sleep, so I don't feel refreshed afterwards). I'm worried about driving, as I once again feel like I did before I was diagnosed and began treatment - almost like I'm hypnotized on the road and don't remember getting from A to B. So I'm staying home and driving as little as possible (and when I *do* have to be out, I'm only driving a short distance to the local grocery to replenish perishables).

I took it for a week and felt the same way. Stoned all morning and dozing then a massive headache the rest of the day and nauseous all the time . I drove only 3 blocks a couple of times during that week. I was in the process of moving. The whole thing was a nightmare.

BleepingBeauty,

Medical professionals can be really irritating. I've had a 'medical personnel are stupid' kind of day, so reading your post really gives me hope that there really are good doc's out there, I just need to look harder.

As for your prednisone, it affects everyone differently, but it wrecks my sleep too. You may need a few days/weeks for it to clear your system entirely, but since you are tapering the bad sleep will probably get better much faster than if just a full stop/drop off. I've experienced both methods & much prefer tapering.

Take good care of yourself, sounds like you've been thru a lot. I'll keep you in my prayers.

Jen

BlackSpinner wrote:I took it for a week and felt the same way. Stoned all morning and dozing then a massive headache the rest of the day and nauseous all the time . I drove only 3 blocks a couple of times during that week. I was in the process of moving. The whole thing was a nightmare.

I haven't experienced the headache or nausea from the Prednisone, so I guess I'm grateful for that much. There are several other known side effects that *are* affecting me badly, though (among them terrible heartburn, which I never experience; extreme dryness of the eyes, nose and throat, like I can't drink enough water; and really bad water retention in my belly and feet). I'll be really glad when I'm done taking it.

I had a bad drug reaction in the hospital when one of the docs gave me a low dose of Seroquel one night (to help with the poor sleep from the Prednisone). I have to say it did knock me right out, so I guess it served its purpose, but it worked so well that I konked out on the bed before I knew what was happening. I think I "slept" for a couple of hours without my machine, and then I woke up and called for the nurse because my head felt like it was full of helium and I was afraid to get off the bed and try to walk to the bathroom. It definitely did NOT agree with me, and I took a wild ride on an emotional roller-coaster for several minutes. I was a mess the whole next day, too. They tried to give it to me again the next night, and I refused. Definitely not for me.

jencat824 wrote:BleepingBeauty,

Medical professionals can be really irritating. I've had a 'medical personnel are stupid' kind of day, so reading your post really gives me hope that there really are good doc's out there, I just need to look harder.

Sorry to hear that, but I think we can all relate. But just to be clear, I have a really good feeling about this pulmonologist, but I won't know much until I actually meet with him and see how that goes. High hopes, but cautious ones for now.

As for your prednisone, it affects everyone differently, but it wrecks my sleep too. You may need a few days/weeks for it to clear your system entirely, but since you are tapering the bad sleep will probably get better much faster than if just a full stop/drop off. I've experienced both methods & much prefer tapering.

Take good care of yourself, sounds like you've been thru a lot. I'll keep you in my prayers.

Jen

Thanks. I sure hope the tapering lets me get back to somewhat normal sleep sooner rather than later. Being a child of the 60s, I've paid money in the past to purposely feel off-kilter for awhile. This time it's free, and I don't like it.

jencat824 wrote:since you are tapering the bad sleep will probably get better much faster than if just a full stop/drop off. I've experienced both methods & much prefer tapering.

Whoever took you off prednisone without tapering is not only an idiot, but a dangerous one. If it's not considered malpractice, it should be. People die that way.